Date: 16.04.2011
From: Lee York, UK
|
Subject: New to Forum possibly PA
Hi I was diagnosed about 6-8 months ago when I complained of knee and elbow pain with some fingers going numb on my hand during the night. My Dr sent me to hospital who x-ray'd and scanned my arms and knee and said its the starting of PA and gave me a cortisone injection into my right hip/bum cheek.. This did nothing and both arms were "burning" and very painful. The Hospital put me on Sulfasalzine and Diclofenac and was keeping things at bay along with some solpadol (Co-Codamol). Recently my arms got a lot worse and is making me miss lot of work as I work on computers and some days my hands and arms are so sore I cant work. This is causing concern with the amount of time im missing might lead to me losing my job. The last hospital appointment the dr at hospital gave me yet another injection after me telling him it wont work. They have finally admitted the elbow and numbness is Ulner nerve compression but has yet to do anything about it. My pain was so bad recently that the co-codamol did nothing and my dr prescribed me Naproxen and Tramdol which removed all pain and discomfort. Ive stopped the dicolfenac and have ran out of tramadol which hopefully the dr can give me another perscription as after a day or so not with it my arms are burning and tingling again. Im not convinced its PA but that is what the hospital keeps telling me. Im more worried that I might lose my job while the hospital makes its mind up what it is and how to treat it. Its not classed as a disability so I prob cant claim DLA so theres no safety net in case work do let me go due to sickness. I'll try and get more tramadol on monday and I just hope I can and the pain goes away again as its hurts to use a computer some days and is a main part of my job.
|
Date: 17.04.2011
From: louloubelle
|
Subject: Re: New to Forum possibly PA
Hi Lee I'm sorry to hear you are having a tough time. Do you have pitting in your finger nails as well as psoriasis? I understand that this is one of the main indicators (obviously along with painful and swollen joints) that you may have PA. I've had PA for nearly 22 years (I'm now 31) and have suffered varying levels of pain and discomfort from no symptoms at all to being unable to get out of bed. I found that as I "got used to" having the PA in a particular joint it did improve over time and was less debilitating until I have a massive flare up. I found that sulfasalazine had no effect on my condition so the rheumy tried me on different meds until he found one to suit me. It is worth perservering as you will find something to suit yuo. I found that I learned to adapt and have been able to hold down a full time job for all of my adult life so, once your rheumy controls the condition with the correct medication, I'm sure you'll be able to lead a more normal life. Don't get me wrong, there are super tough days and most people here will agree that the fatigue is one of the toughest things but, on the whole, I'm sure things will get better. With regards to being classed as disabled, this is determined by DLA. You would need to make an application (and make absolute sure you complete it referring to your ability when you are at your absolute worst) and they will decide your level of disability. Everyone on here is super helpful so if you want to ask anything then people will be happy to respond. There are far more PA sufferers on here than you might imagine. Take care
Lou x
|
Date: 18.04.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
Ah lou your so nice and even after going through what you have your so helpful xx
|
Date: 18.04.2011
From: Lee York, UK
|
Subject: Re: New to Forum possibly PA
Well 48hrs after stopping Tramadol because I ran out and Im feeling the worse ive ever been. From what I can tell even though I only been on Tramadol for 2-3 weeks my body cant handle stopping it and i've got withdrawel symptoms pretty bad. Got a Dr's appointment today to discuss it, I just hope the sickness, shakes and restlessness can go away or a different drug can be given. This is the first time i've ever had withdrawel symptoms from any drugs that have been persrcribed of pain. Luckily my arms are not hurting as much at the moment but this could be down to me feeling bad im not thinking about it
|
Date: 18.04.2011
From: Lee York, UK
|
Subject: Re: New to Forum possibly PA
From: Lee York, UK
(no email supplied) Subject: Re: New to Forum possibly PA Shock horror dr gave me more tramadol as they are keeping everything at bay. He miss calculated and only gave me enough for 2 weeks so thats why i ran out and had withdrawel symptoms. He did say that might be on them long term and hopefully can stop them. I made sure i told him if i do need to stop them then I will need something to counter-act the withdrawal symptoms as I can spend a week like that 48hrs was bad enough. I hope that I dont have to take them long term, for one cant drink lol Im on 2 Sulphasalazine in morn and 2 at night so im sure the hospital could adjust this to see if that helps but my consultant is away and wont be seeing him for 10 weeks. Im happy (ish) to give up drinking if to be pain free but there is some days after work could really do with a drink. Suppose gotta decided pain free(ish) or drinking
|
Date: 18.04.2011
From: louloubelle
|
Subject: Re: New to Forum possibly PA
Hi Lee You're not meant to drink when taking co-codamols but I have to say, when I was a young-un I would go out drinking and dancing then be in absolute agony when I got home... a coulpe of co-codomols didn't half hep me sleep lol Very naughty I know but I'm still alive to tell the tale. I had withdrawal symptoms from co-codomols recently. It lasdted about 3 days and I was a bitch! Was really twitchy and felt like I had to be busy but couldn't be bothered. I was dead moody too (more than normal). But I soon got over them so now that I'm taking them frequently again I know that when I don't need them the withdrawal symptoms go away fairly quickly. I hope the sulfa starts to work. Lou x
|
Date: 23.04.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
After restarting Tramadol im feeling bad and my arms and wrists are hurting a lot atm. I know i shouldnt get down but I do feel like crying some days
|
Date: 23.04.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
Hi lee so sorry your going through the mill at the moment as i have said to others its early days and your just starting to get your head around all of this feeling down and haveing a good cry every now and again in totaly normal and to be honest 17 years on i still do. Not as much but i dont know whether you ever get past the "why"me bit. I do believe that the only people who truly understand are fellow sufferers so keep posting and am sure well all help as much as we can xxxxx
|
Date: 23.04.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Hi Lee just a little message of support, at the moment my hands and feet are driving me mad. I feel like stamping and shouting (if i could only stamp lol) I also take Tramacet i find this a little bit easier than tramadol. I also have co-dydramol for the lesser pain. haha!! I have had loads of support from this forum it is true they all understand. Have you been offered hydro therapy I am doing this at the moment, I was a bit whatever but i was encourage by this forum to give it a go and i must say it is GREAT. It is only for six weeks on the NHS and i think i will be a little upset when mine finishes. I am sending you best wishes hang on in there. If you need a good cry then have one!!!!! XXXX
|
Date: 06.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
The nightmare continues Im off work again atm but not sure if its related to the PA or not. A week ago I started to feel sick and noticed heart rate speeded up and I was getting "buzzing" sensations or vibrations through the body and its making my body shake. Im asleep most of the day Hospital said not heart and doesnt think its my PA or meds but could be Anxiety or Thyroid. Waiting for my blood test to say not thyroid. I hope it is just Anxiety with all the hassle and pain of the last year and some family issue with my gran being diagnose with stomach cancer last month . If it is just Anxiety i suppose its just another pill I can take...im going to rattle soon
|
Date: 06.05.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
Hope your ok lee x
|
Date: 08.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
well i ended up in A&E in an ambulance this morning as my chest was thumping so fast and hard was very dizzy and shaky. The hospital said heart is fine,chest is fine and blood is carrying enough oxygen as they took blood from my main artery in my wrist ( god that hurt!!) In a bad way im no closer to finding out why i am feeling so bad but in a good way its not one of the main worries.
I have a copy of the blood results and its not due to an inflamation or PA as all my readings are fine so fingers crossed got Drs appt tomorrow and they say its anxiety and stress and can give me sonething to stop shaking and go back to work
|
Date: 08.05.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Sorry to hear your not so good Lee, hope your Doc can help you.Best wishes winging your way.
|
Date: 09.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Well Dr said time to change my anti-depressants to include one tailored to Anxiety so im now on one that does same thing as Tramadol and says "Warning with Tramadol" Great...lol Dr said fine so i beleive him, so hopefully stomach and shake free by end of week
|
Date: 09.05.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Fingers crossed. Hope all goes well.
|
Date: 09.05.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
Oh lee hope your ok hon xx
|
Date: 09.05.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
Lee just another thought hon this could be due to tramadol its opiate based and you can get some of the side effects you describe from opiates. Has your gp considered this? The side efects can also be made worse by dehydration so make sure you drink plenty of water x
|
Date: 10.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
he doesnt think its the tramadol but after his advice of stopping my antidepressant mirtazipine suddenly and going onto surtraline i think he hasnt considered it. I was bit concerned as tramadol and surtraline are both SSRI and affect serotone in the brain but Dr reassured me its fine Bollocks (pardon my french) Took 1 sertraline at 4pm yesterday and within 20-30 mins my head felt like it was in a vice and left hand side of head felt numb. Arms felt jelly like and vibrating. This feeling was increased tenfold 2 hrs later with 2 tramadol and then 2 more about 1AM. Went into major panic attack which ive been doing a lot recently and feel stupid for doing if and my head was not mine, my body felt like i was watching myself. 15hrs later and no sleep and only just been able to take normal meds due to horrific shakes and nausea. only took 1 tramafol as scared that i will get that feeling again to see if settles my nausea and allows me to get sleep. I am sorry i have gone off track with my rambles that are not related directly with my PA and will try and stay on topic :) hopefully can see dr again today and im blatantly refusing to take sertraline im getting more and more worked up with this and esp as missing work again i just hope i cam get some normality again and be able to have a happy day
|
Date: 10.05.2011
From: Dilizjo
|
Subject: Re: New to Forum possibly PA
Hiya Lee and a big Hug, make sure the doctor actually listens and takes on board what you are experiencing. I hope everything turns better for you soon:)
|
Date: 10.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Dr apologised for giving me the meds and has wrote a report about it. So now got loads of vallium/diazepam to let me sleep and recover
|
Date: 10.05.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
Oh hopfully they will be better lee feel free to ramble away hon hope you sleep well x
|
Date: 11.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Ive asked if there is any work i can do from home as scared about more time off work and job but the job i do requires the network and programs so its prob not feesable
|
Date: 12.05.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
Hi lee when you google severe side effects of tramadol several pf the symptoms you described come up cant believe both the hosp and your gp didnt think of it! The report he wrote will have been a adverse reaction report that goes the the medicine regulators the MHRA. Hope your recovering x
|
Date: 18.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Ive been sign off for another 2 weeks as the side effects from an allergic reaction finally wore off but the I had to admit to my dr that im unable to face work. Dr was shocked I hadnt had a nervous breakdown lol Im 33 and taking about 20 tablets in total throughout the day for pain and depression and shakes. Hes upped the depressants to help with all that and some serious family issues with mum being diagnosed with parkinsons and nan is slowly dying of stomach cancer all discovered within 1 month. im spending most of the day crying but at least i admitted the problem and im not having suicidal thoughts or harming myself. Big concern now is job and whether they will look to issue warnings and proceedures due to sickness record. Dr has put PA down as reason but gotta take a call from my manager tomorrow to explain how i am. Do i tell them its just the PA or everything and stress of job
|
Date: 18.05.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Lee, i have read your post and send you best wishes. It seems at the moment you have a lot to deal with. I am sure your manager will understand, tell him about your pa and the allergic reaction you had. If you feel you are not ready to talk to your manager about your family issues yet, then wait until you are. If you are a private person then you dont have to talk to him about that at all. Try not to worry about work to much you need to concentrate on getting well first. If you need advice on benefits and what you can claim phone your local citizens advice bureau. Lee i hope you feel better real soon. XX
|
Date: 18.05.2011
From: Patricia
|
Subject: Re: New to Forum possibly PA
Hi Lee :-) You are dealing with so much right now it is no wonder you are getting upset. I feel heartfelt sorry for you young ones with this awful illness ( I was fortunate and didn't get it until I was in my fifties!). Work is certainly not the place to be whilst you are going through this. In fact I would say it is the last place you need to be. With your Doc putting PA on your sick note there is no need to tell your Manager about the other issues, only if you want to. You have valid reasons to be off Lee and I am sure your Doctor will back you up if needs be. Stress is not good with RA/PA so please try not to worry, although that is easier said than done, you need all your energy to get stronger :-). I am so sorry to hear about your mum and nan. Just stay close as a family and support each other. That is all you can do Lee. Take very good care....x
|
Date: 18.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Thanks for all the well wishers it really does help. I ended up breaking down on phone with my manager so she knows how bad I am at the moment and I am forcing myself to play some games on my xbox with my friends to take my mind of things. Im even forcing myself to just "get out" of the house for a walk however short it is. There are a lot of films I want to watch at cinema but as i'm off ill im scared that if im seen then it might cause more hassle. I apologise again for going off topic esp as this website is for Arthritis and not depression
|
Date: 18.05.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Feeling low goes hand in ahnd with arthritis whatever form you have, being in pain brings you down. So feel free to talk about how you feel. I also some days sit in floods of tears usually when i am alone in the house, i dont like other people to see me. Stupid i know my husband is a great support, but i know he feels useless when he sees me cry. So this forum is a god send for all of us. Just because you are ill doesnt mean you have to stay home your GP will tell you going out and socialising is good for you. Im glad your manager knows how you feel, well done Lee, I am sure you will be supported fully from your work place. Go to the cinema and have a good time bless you take care.
|
Date: 19.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
its my 24/7 panic attacks at the moment. The first bit of unwell feeling I panic or worry about the smallest of things like cant find a pen etc lol Ive never suffered with panic attacks before and the increase in anti depressents work for night and sleep but dont do owt for me in daytime
|
Date: 19.05.2011
From: Francesca
|
Subject: Re: New to Forum possibly PA
I have PsA and my symptoms sound a lot like yours - elbow pain being my worst. I have pitting of the nails but they are very slight and easy to miss. I did some training at work on the new discrimination act and I believe that Arthritis is one of the conditions it automatically covers, so, in that sense you are classed as disabled and your employer has a legal obligation to make reasonable adjustments to your working life to enable you to work (special chair, wrist rest etc etc) Good luck!!
|
Date: 20.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
As the Increase of Mirtazapine for depression is knocking me out at night finally getting some good sleep. Dr is perscribing Beta Blockers for daytime to help with nerves and worry
|
Date: 21.05.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
Lee the other thing to consider is that with your pa you will be covered by the disability act so you have rights under that worthwhile reading up on so you know your rights take care hon x
|
Date: 21.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
I think because of the severity of the last couple of weeks work has now sat up and took more notice apart from just requesting a report from my dr ever month. I think from their point of view and mine I just saw the PA as a pysical disability and didnt consider the mentallity side of it untill this happened. So yeah I would consider myself disabled now in the fact I need medication to be able to perform routine daily functions on a pysical and mental stage. Not sure the government would consider anything if I applied for disability as im mobile and able to do my job most of the time so I wont be going down that avenue. thanks for everyones advice and warm welcome as before i found this site i really didnt have an outlet to chat about it with others going through the same things. And yes I do talk a lot and post alot lol its just something I have always done
|
Date: 25.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Well ive been taking 40mg of Propanolo and it seems to help for a few hours of stopping shaking but it does seem im craving sweet foods and as im not eating much whatever i think theyre prob contributing to the shakes. Im getting really annoyed now as I dont think its all stress and anxiety related but thats what the DR thinks and I still havent had another appointment from the specialist. I need to know if I can take more than one Propanolol a day to see if can keep shakes at bay longer as the mirtazipine seems to be only working at night. On a side note I dont know if anyone also has taken mirtazipine or propanolol but im getting a swelling in my left forearm and dont know if its related to one of the many drugs i seem to have to keep popping. I think work will probably cut my pay soon or try and warn me for sickness and I know the PA is covered under the disability act but I dont know where stress/depression/anxiety/panic attacks come in the workplace and I have a leg to stand on. Im going to a friends for the weekend to do some GEEK stuff to try and take my mind off things, i just hope I can manage the weekend.
|
Date: 26.05.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
Hope you have a great weekend lee and remember nanna naps are always good lol xxx
|
Date: 26.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Nanna naps are the one thing that im going to miss when i finally go back to work. I even asked if we could have a medical room with a bed in case people felt sick etc but they didnt bother... Think they knew i would use it and have a nap at lunch
|
Date: 28.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Yes me again and Im sorry for rambling but it helps me to type even if no-one reads or comments. I feel like a Prat(politest thing i could type)after collapsing in a heap in Southport tonight as thought I could manage a weekend away at friends to see if it would help. They understand but still doesnt help me feeling out of control. I cant do social things anymore without crying all the time, panicking and wanting to go to hospital even though i know they cant do owt. I refused a counsellor as i dont think it would help and I think its meds related. I asked my DR could it be Gastro as thats where the pulsating feels stronger and I get shaky after eating but they dismissed it straight away and just said as stomach swells with food you can feel it more. Ive suffered depression before and been fine for many years and only a cpl months after taking Tramadol and Naproxen I know find myself in this situation. The downside is if I stop the Tramadol I get severe side effects and the pain returns but if I continue and get worse socially etc then my job becomes a problem. Has anyone had or know anyone who got social anxiety/panic attacks or increased depression from taking Tramadol?? I do have some family related stress issue but ive never shaken with stress before and all drs keep fobbing me off with stress/anxiety instead of seeing about different meds perhaps to help.
|
Date: 28.05.2011
From: Francesca
|
Subject: Re: New to Forum possibly PA
Hello Lee
i am sorry to hear what a horrible tme you are having. I work in mental health and it is not unheard of for anxiety and/or depression symptoms to come on out of the blue and seem to have no trigger. However, you are right, i think, to rule out side effects first. I just googled 'tramadol side effects' and read the first and 3rd webpages on the list which looks reliable (one never knows for sure). Anxiety and depression symptoms are mentioned. Would these pages explain some of your symptoms? You could always print these and take them to your GP?
Good luck
|
Date: 28.05.2011
From: Patricia
|
Subject: Re: New to Forum possibly PA
Oh dear. Why won't some of the Doctors listen to us?? Before I was diagnosed with RA I was told my symptoms were due to the stress of looking after my mum. That went on for several years!!!!! I haven't ever taken Tramadol Lee but I think it is a 'man made' morphine (I could be wrong). I take Oramorph which I have never had a problem with. Being a liquid I can take it more easily and adjust the dose. May be worth a try. You know Lee you are dealing with a lot and probably expecting too much of yourself. It is a debilitating illness and does make us feel fed up and depressed. I understand you are really suffering at the momentand you must try not to be too hard on yourself. It will make you feel better perhaps if you set yourself simple goals to get through the day first. You are perhaps trying to do the same amount you did before all this kicked in. One step at a time Lee to wellness again. Make it your aim to go back to the Doc and ask for something different to try meds wise. You definitely need pain relief Lee. Take care....x
|
Date: 29.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Well im on my last day away from home and ppl been great but its been really too hard at times...i maybe wasnt ready to stay in Liverpool/Southport and should have tried bit closer to york first. Ive had bad stomach pain which im seeing DR on tuesday and demanding a scan as I know there is a problem (I think Gallstones)and not just my drugs/anxiety and stress as dr keeps saying and not leaving till i get it So will message from jail lol
|
Date: 29.05.2011
From: mads
|
Subject: Re: New to Forum possibly PA
lee, was just reading your posts there - you are certainly having it rough - hope you get home safely, that the doctor hears what you are saying and that you get sorted out properly.
|
Date: 29.05.2011
From: x kerry x
|
Subject: Re: New to Forum possibly PA
lee, i was on tramadol for 4 weeks, and started getting exactly like the way your describing yourself to be. I was sleeping all the time, having hurrendous nightmares, and when i was awake it was even worse. I was having major panic attacks at work (i was working as a dancer, so being confident is part of the job, nobody wants to see a dancer who just cowers in the corner of the stage crying!) in the end i had to take a long time off, went back for a few weeks then had to quit, mostly because my pa got worse, but alot of it was just my confidence had been knocked. I couldnt leave the house, was breaking down at the thought of going anywhere and was having serious suicidal thoughts. Then one day my flat mate forced me to go out with him to get me some food (just to asda) because i hadnt been eating, and i had a break down in the frozen foods ailse. All because my brain had turned to mush and i couldnt make a decsicion over 2 freezer meals. I collapsed in a heap on the floor, sobbing and shaking. My poor mate had to carry me out of asda, he put me in his car and took me straight to my dr's surgery. I remember walking in, going up to the receptionis whilst breaking my heart and saying 'i need a dr straight away, im going to kill myself' sound totally crazy now, but at the time it was all i wanted to do, it seemed like the only way out, like i had no more options. After half an hour of waiting in hysterics (and my friend convincing me not to just get up and walk away) i seen the dr, told him how i felt and that i may need to be sectioned as i was probably going crazy, the first thing he asked is what meds i was on. When i mentioned tramadol, he said to stop it straight away. He said tramadol can have side effects like this on some people. I stopped it there and then, and a few days later i was starting to feel normal again. Now im terrified of tramadol, i wouldnt even take 1 tablet no matter how much pain i was in...i never want to be in that place again. This may not be the same for you, my fiancee has been on it for 2 years with no side effects, but im very surprised your dr hasnt mentioned that this kind of thing can happen with tramadol. Go back, shout at him and tell him to do his bloody job properly! These are serious meds, the least we can expect is from the people who dish them out to us is to have some sort of clue about what theyre giving us! Hope this helps a bit and u start to pick up soon x
|
Date: 29.05.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
I have taken tramadol and now i take tramacet just a little different i must say i feel very lucky that i do not have the effects that a lot of you seem to have. I do have weird dreams sometmes, but i have noticed this seems to happen when i take tramacet and am really suffering with the pain. I hope you all have found pain killers that suit you all. X
|
Date: 29.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Im going to have to go Dr's on Tuesday and just refuse to leave untill I get what I want. Since the DR said oh Anxiety/Stress thats all they have considered and no other avenues have been even talked about. Well taking Lansoprozole, Anti inflam and Gaviscon I wouldnt expect my stomach to swell and be painful...SO Gallstones or something else..... I have never suffered bad anxiety and panic attacks and yes I have been on tramadol and naproxen for a while and was stable but you can develop symptoms etc...which yet again the drs have said stress/anxeity thats why I shake. Well is it?? Why dont we stop my Tramadol and Naproxen and see if after a week I get better instead of just giving me beta blockers to stop the shaking and attacks. I dont know where to go for the best now as IF the dr still wont scan my stomach or consider the meds are the cause then I cant really go anywhere else to sort it. I have tried stopping the tramadol before and got bad shakes, sweats and DT's after 48's and couldnt bare them cold turkey Im just scared Im going to get worse and worse and all the GP's want to do is keep giving me tablets to stop the other symptoms and dismiss everything I say and suggest
|
Date: 31.05.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
So sort of a semi-success at Drs Stopped the Naproxen
Stopped the Tramadol and switched me back to Co-codamol to ensure no bad withdrawl symptoms. Kept the Sulphsalazine
Kept the Lansoprazole
Kept the Mirtazipine Given me Luctolose Im happy to be off the tramadol and naproxen but it means im taking no anti imflammatories now and im already sore
|
Date: 31.05.2011
From: mads
|
Subject: Re: New to Forum possibly PA
Good luck Lee, i hope the anxiety quietens now, you have enough to deal with. If they can pinpoint it to the tramadol that may allow you to go back on the naproxen.
|
Date: 01.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Well 24hrs without Tramadol and Naproxen and damn I can feel the difference. Atm unable to get out of bed. Every part of me whuch ached or didnt ache now is and im in a lot of pain which makes me want to go back on them already lol Ive got to be strong and wait it out and just live with the body restlessness and pain.
|
Date: 02.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Well I feel like an idiot again as I collapsed in agony and couldnt catch my breath so an ambulance was called.... Basically all the meds had blocked me up so much im getting swelling in the bowels etc and now have to drink a lot of Movicol. Thats what is annoying me with this disease is that the DR's and specialists just say take this or that and never prepare people for the "effects" all the meds have on the body, the digestive system and the bowels etc. Once you have a form of Arthritis then with the meds comes alot of other complications that the drs dont seem to either explain or advise If I was told some of the things ive gone through I might have just said bugger it all and I will live with the pain and aching as by taking the drugs ive been a lot worse with things that not taking them
|
Date: 02.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
when you are precribed new meds do you read the info that comes with them or look them up on the internet.I find by doing research on the meds it is helpful as normally all side effects get mentioned. I do feel for you Lee you seem to be having a real hard time of it. Dont worry about calling ambulance you always need to be safer than sorry. I am sure the paramedics understand.I have OA and muscularskelatal disorder, the first time the muscularskelatal disorder reared its ugly head i thought i was having a heart attack,when i asked them how will i know the difference they explained the whole thing to me. Lee take a bit of friendly advice ask them to explain everything to you its your right to be warned of any side effects. It is hard coping with all the new issues that come along with any kind of arthritis, i had a fall on Sunday and am still in agony as a result, well if i must chuck myself on the floor what do expect LOL. Well Lee take care and hope you get some sleep unlike me its 1:08 and still waiting for painkillers to work. Sending best wishes
|
Date: 02.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
I started reading all the leaflets and internet but it made me more anxious and scared with all the horror stories people had with majority of the drugs esp Tramadol. I think 90% of the stories online were worst case scenarios or taking too much of the meds lol Anyway thanks for the best wishes and ill try get some sleep and hope you do too
|
Date: 02.06.2011
From: Patricia
|
Subject: Re: New to Forum possibly PA
Aww sorry you are still having problems Lee. You are still 'going through the mill' aren't you? Movicol is really good. I was prescribed this when I was put on the oramorph. It does work!!! I don't take it now but I do take one tablespoon of linseeds with my cereal on a morning and that works too. You get it from the healthshop. It is natural and I took it alongside the movicol too. It is awful that you are still in pain Lee and you shouldn't be left like this. This happened to me at the beginning of my diagnosis. I was most unwell and just couldn't get a doc to come out and see me. Well, eventually they did and put me onto the steroids and oramorph. I thought it was going to be short term but a year later and I am still on them!!! I hope to be off them as soon as I can. It is scarey when we read the side effects of drugs but at the moment you can't go on indefinitely with the pain levels you have. Hope you managed a better night's sleep...x
|
Date: 02.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
I take my hat off to anyone who can drink movicol as I managed 6 in 6 hours instead of the 8 sachets as couldnt take any more. I know it says plain but it leaves me feeling sick but I will try again tomorrow
|
Date: 03.06.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
lee might sound daft but try natural liqourish ( spelt wrong i know but hey its midnight !) lol it works a treat dont go over board with it or youll just get gripes ( about 10 pieces a day ) and fresh orange with bits in , better than any prescribed meds
|
Date: 03.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
sounds like a better option but as you say easy does it LOL
|
Date: 04.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Well im on day 4 of no tramadol and naproxen and I feel horrible. Head Fuzzy and Eyes Blurry and constant feeling of sick. Had to stop the Movicol as i cant pyshically take anymore of it. Im assuming all the stuff I am getting and feeling is the tramadol withdrawel as ive not gone cold turkey so will take longer with the co-codamol masking some of it... Roll on bed, sleep and a new day..it sounds wierd but I want to go to work...then at least I can know why I feel sick lol
|
Date: 04.06.2011
From: Patricia
|
Subject: Re: New to Forum possibly PA
Lee I am sure the Movicol I was taking was lime flavoured. Not wonderful I guess but probably better than the plain flavour you are taking. Perhaps not take as many to see if you can tolerate it and getting a new flavour might help. If you can go to the health shop or H***and and Ba***tt and buy the linseeds I was talking about. It you sprinkle them over your cereal on a morning and in some yogurt (or similar) during the day I am sure it will help you. I would think you are having withdrawl symptoms Lee. These pain relief medss we are taking are strong!! I have been on oramorph for a year and am dreading coming off it. I have managed to get down to two teaspoons a day :-) Keep being strong. You are doing well...x
|
Date: 07.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Well its been 1 week and I feel 100 times worse just taking co-codamol. Im finding it hard to get out of bed as Every part of me hurts and aches. Im still having brain zaps and blurred vision so my body is still craving the tramadol. I think im going to ask if I can go back on the Diclofenic or Ibuprofen to see if can get out the house. Sorry again for rambles lol night all
|
Date: 07.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Hi Lee, im so sorry you are still going through it. Go back to your Docs if he cant sort your problems you must ask him for a refferal to someone who can. You musnt go on suffering like this, its so bad for us mentally constant pain, and all the other stuff that comes along with it. I had tramadol for 2yrs pretty much everyday befor i had my back surgery. I am glad to say i really didnt suffer with any withdrawal. I am now back on tramacet which is pretty similar (back surgery wasnt that great sorry to say). I also take Co-Dydramol (prescription only) my GP gave me these as he believed they would be more usefull than co-codamol. I do find the pain relief is better with co-dydramol. We all try not to take pain meds but which is worse pain meds or pain!!!! I am not sure if the post is helpful but Lee i am sending you Love and Get Well soon wishes X
|
Date: 07.06.2011
From: Patricia
|
Subject: Re: New to Forum possibly PA
Oh dear Lee. So sorry you are having so much pain. I also think you need to go back to the Doctor and get some better pain relief. I know my Doc tried to get me to come off the Oramorph and told me to substitute it with Co-Codamol. I was in absolute agony. My rheumatologist overtuned the decision and said to carry on taking the Oramorph. We are just trying to decrease it bit by bit. Co-Codamol is absolutely useless for intense pain. I am taking an anti inflammatory called Celebrex. The rheumy prescribed it for me. It is helpful. Diclofenac or Ibuprofen didn't seem to help me. It is difficult because all medicines have side effects but we have to offset our quality of life and pain against that. No one should be in agony and it sounds as though you are at the moment. Hope you get some help soon. Take care....x
|
Date: 08.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
The Out of Hours DR has examined my stomach again and everything looks and feels ok and pee test clear but she said it could be Celiac ((which im sure ive been tested over and over for)) or H Pylori or something similar. So off the GP tomorrow to ask for blood test for everything again. I still want an ultrasound for gallbladder but think wont get one to make sure. Hopefully I can eat and drink again properly soon
|
Date: 09.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Good luck at your Drs. My mother-in-law went to drs yesterday with her knees so swollen and barely able to walk in. She saw a new dr hers away. She told her oh dont worry this is normal!!!!! Oh dear, home she went in agony, to go to bed frozen bags of ice to the rescue.NORMAL for heaven sake she may be 84yrs old to leave her in this way is terrible. So bless you Lee dont let them get away with not getting to the bottom of your problems with your stomach, you have quite enough to deal with with your PA. Wishing you luck for GP visit.
|
Date: 09.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Well the DR didnt send me for blood tests and said the H Pylori test would mean me coming off the Lansoprazole for 2-4 weeks so all they did was change the Lansoprazole to Omerprazole twice a day. I got a really wierd feeling in the head when took it so hopefully thats just conincidence. Got another GP appointment tomorrow and will sit down and discuss everything in more detail. The Hospital called to book me in for Accupunture tomorrow on I think my neck but could be my knee aswell so least that should give me some pain relief.
|
Date: 09.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Good to hear things are moving for you. Sounds like a good idea to have a chat chat with your GP. Wish you luck hope you sleep well tonight. take care
|
Date: 10.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
I just hope something can be done for my stomach as thats hurting me more than the PA and have stopped the new Omeprazole as made my head go funny after 2 tablets Roll on 8:30am and fingers crossed something done
|
Date: 10.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Lets us know how you get on. Be assertive Lee. Take Care X
|
Date: 10.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
GP skirted around stomach problem and doesnt seem concerned and has given me buprenorphine transdermal patches to try so yet another pain killer and no tests. Have to ring my Rhumy and see if Sulphasalazine needs changing
|
Date: 10.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Oh Lee thats not good news. Lee maybe your GP thinks your stomach problems could be related to your stress over your pain. Talk to your rhumy team maybe they might have a little bit of advice for you. I am so sorry you dont seem to be getting much help at the moment.Lee hang in there you will get there in the end i am sure. Take Care.
|
Date: 10.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Im completely stumped as the GP's seem to dismiss my stomach concerns and just give me stronger pain killers. Two GP dr's now havent even examined me. The only time ive had an examination is at tge Hospital out of hours and she suggested some blood tests for the stomach which the drs havent bothered with. So basically the vicious circle starts again masking each problem and side effect with another drug without actually treating the issue.
|
Date: 10.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
It doesnt seem like they are treating your stomach issues seperately from your pa pain. I dont understand why your gp is so dismissive of the issue. I have other problems other than arthur and i am lucky enough for my gp to realise that my other problems are not related.I dont know what to say to you, i guess you will have to keep going back to gp until they listen to you.I sometimes find if you are getting nowhere try a different gp at practice (dont know how many gps you have at yours). I found a different gp has to listen because they are not up to par on your health issues. Lee just keep at it i know it can be totally devastating not to feel like you are being listened to. Take care and try to keep smiling. I hope you have a good network support from family and friends as this is also important for us. X
|
Date: 10.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Im getting a 2nd opinion by the last dr i havent seen at the surgery to see if he will do something otherwise I will be going to the Primary Care Trust. Ive spoken with my Rhumy who said stop the sulphasalazine for a week and see how I go as theyre having trouble getting time to see people so I might not get an appointment for months. Im not taking the morphine patches and the Rhumy said it doesnt seem the Drs are seperating the two problems.
|
Date: 10.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Hi Lee, sorry your drs visit wasnt what you expected. It does seem like your stomach issue is not being looked at seriously. Lee if you get in trouble with it too much just go to A&E. In the end some one will get to the bottom of it. Keep trying wish you luck. Take care. X
|
Date: 10.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Finally a bit of success as the last Dr in the Surgery before going external listened. He examined me and has arranged for an urgent scan at the hospital. He said he couldnt feel anything and blood worked looked fine. He told me not to start the patches I got from another GP this morning and to stop taking the propanalol for anxiety. He gave me Buscopan to take to control any spasms in stomach and wants to see my next week. My specialist also stopped my sulphasalazine today as well so hardly any pain drugs or rhumatic drugs in my system. In one aspect im happy as its going somewhere but I think the pain will be bad which my specialist doesnt realise as he said my case isnt that bad. Id like him to feel what i feel everyday and then say not bad
|
Date: 10.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Lee it looks like someone is listeneing to you. If the pain is too bad you must go to a&e for help bless you take care try to have a good nights sleep and a good week-end.
|
Date: 11.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
I dont think anyone will actually give me any stronger meds while my stomach and digestive system is so bad. The Buscopan did help and stopped some pain but gave me a wierd feeling I get with any new drug but seem to ease the pain a bit. Got to take it 3 times a day so just gotta manage all other pain with co-codamol as wont have Rhumy Drugs anymore. I can see me being in bed for majority of weekend with laptop and TV Have a good weekend all
|
Date: 11.06.2011
From: Marlene
|
Subject: Re: New to Forum possibly PA
Lee take care nothing wrong with with having time in bed. LOL I wish you well and what ever you do this week-end enjoy!!!!!!
|
Date: 11.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Well whatever happens if im well or ill I have to be back to work by 22nd as otherwise I get no sick pay and on £81 a week which wont cover my rent. Great start to weekend
|
Date: 11.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Lee, You can get your rent paid for you i am not sure how it works.If it is council or private you can ring your local council and see if you can get housing benefit this also includes a reduction in your poll tax.You should also contact your local citizens advice bureau. They will give you the guidance of what help you may be entitled to. Lee make the calls now ready in case you are still not fit for work. I know its easy for other people to say hang in there but it is all meant with the best intent.Hope this helps and gives you a bit of support. Take Care Lee. X
|
Date: 11.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Ill go to the CAB on monday and see if they can give me some advice. I might complain to work as well as i wouldnt mind if I was off sick with Flu or sniffles but this is something out of my control so cant they make allowances?? and give me more notice than 1 week that my sick pay goes!!
|
Date: 11.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
I think CAB is the way to go, dont let anything get in the way of your recovery. I cant see how a chat with work would hurt. Maybe they could help you out in some way at least maybe give you some advice. Wish you luck take care.
|
Date: 12.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Im getting a lot of pain in the legs atm more on the left one though which looks swollen compared to the right one and the calf feels really tight and sore. Im assuming it because I have no meds in my system and things are not being controlled anymore. Ive got to speak to DR again anyway or see him on Thursday so might have to bring it up.
|
Date: 14.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Had a rough night like I did when I am allergic to something, sweats, shakes, brain zaps waking me up and lot of pain in my left leg. The only thing it could be is sulfasalazine withdrawel?? Anyone else get side effects when stopped it?
|
Date: 14.06.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
No lee i never had but i guess you could be sensitive to med withdrawl x
|
Date: 14.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Ive read quite a bit on fibromyalgia and im starting tobwonder if that could be what I have as it ticks all the boxes and would explain a lot of the problems im having. Might discuss it with GP on thursday
|
Date: 15.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Had to go to Emergency Dr over stomach who will chase my GP for Ultrasound as he was going to admit me to hospital but nothing would be done tonight so he gave me some strong diazepam to sleep and keep muscles loose and he will contact my DR to push it through hopefully tomorrow. He said cant find owt physically so need scans and possible admitting to hospital for tests
|
Date: 15.06.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
My god lee your going through the mill honey hope you get it all sorted xx
|
Date: 16.06.2011
From: Ler
|
Subject: Re: New to Forum possibly PA
Got Ultrascan booked for next Thursday and just had an Xray on my stomach and intestine as Dr things I have a blockage so at least theyre doing something after I shouted a lot and threatend complaints and external advict from the PCT. I dont like doing it as its a nice GP surgery but if its the only way to get a resolution it had to be done
|
Date: 16.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Well good for you. Hope all goes well fingers crossed. Take care Lee.
|
Date: 16.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
thanks as im getting to the end of my sanity and really struggling to just get up in the day now as everyday is the same or worse than the previous one If its not the whole body pain, its my stomach , or the brain fog and head/neck pain topped with tremors and blurred vision. It would be nice just to have on day a week free of this as its making my depression even worse as hard coping and no chance of seeing work again in the forseeable future so wages dropped and might lose flat. Everyday is a snowball efffect and no way of getting off atm. sorry for the downer
|
Date: 17.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Lee please contact CAB for help with your rent for flat. Dont leave it until its too late. I am sure they can advise you with your current problems wether it but short or long term. Remember dont ask dont get. Good Luck and Take Care.
|
Date: 18.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
I am trying but the CAB only open for drop in session for 2ish hours monday to wed and their benefit phoneline is not answered. Gonna have to get up very early monday and go camp on their doorstep and wait for rhem to open and see what I can do. Work has said if off for 26 weeks they might be able to do something but I dont want to be off that long or wait that long. HR said they want to help....well stop harassing me and stop threatening me with sod all pay lol thats not helping anyone
|
Date: 18.06.2011
From: Dilizjo
|
Subject: Re: New to Forum possibly PA
Hi Lee,
Just a thought but have you contacted your local council's benefits office? You may be able to claim housing and council tax benefit if you are on a low income at the moment.
If I were you I'd ring them first thing Monday morning and ask for claim forms for Housing benefit and Council Tax and fill them in, it may not be a lot you recieve but every little helps.
Really sorry you are having such a rough time of it :(
|
Date: 18.06.2011
From: Dilizjo
|
Subject: Re: New to Forum possibly PA
just a PS to my last post, please do it staright away as they will back date payments to the day you start the claim and that is the day you ring them not get the form in, and on £81 per week you will definitely be eligible for both
|
Date: 18.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
i'll try that as well as the CAB monday as any little help will do. With regards to meds tho its quite amusing that since ive stopped the sulfasalazine meds ive not got any better or worse which leads me to wonder if the sulfasalzine actually was doing anything
|
Date: 20.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Damn you CAB... The website said drop in starts at 9:30, what they didnt say was it opens earlier to let people in so basically ive got a long wait today and its only a diagnostic service and interview so might not get anywhere today Well didnt have anything else to do today lol
|
Date: 20.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
What a waste of time. I waited 1hr to be seen to be told no information or advised on anything that could be claimed. They dismissed my arthritis and depression and stress etc and heard the word rent and centered on that and told me to go to another drop in session elsewhere on wednesday who can discuss housing and possible benefit check. Am i supposed to be in debt etc before they help and do they think arthritis and depression is just tough s**t deal with it...
So annoyef
|
Date: 20.06.2011
From: Dilizjo
|
Subject: Re: New to Forum possibly PA
Hiya Lee, Honestly please phone your local council's housing benefit office and get the claim form.... you are being given the run around and the sooner you do it the better it will be for you.
Chin up xx
|
Date: 20.06.2011
From: Dilizjo
|
Subject: Re: New to Forum possibly PA
Also Lee contact your local welfare rights department they can advise you over the phone instead of going through the stress of having to sit in waiting rooms and gaining nothing.
|
Date: 20.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Lee,please go to the local council office regarding your rent, wether it be council or private if you are on a low income they will advise you and help!!! CAB i have no time for them i made an appointment and three days later got a call to say,if you appeal your claim with DLA you probably wont get a different answer,anyway the goverment are doing a lot of cut backs. Oh great i felt i needed them like a hole in the head. I did my own forms. I am not saying all the centres are the same. Just seems like you and me got bum ones. LOL Take care Lee, dont take no for an answer, its your right.
|
Date: 20.06.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
Lee thats shocking treatment who do they think they are. Wonder if theyve made assumtions because your young?
|
Date: 20.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
I was miffed, well thats the polite version. I am going to ring the DWP tomorrow and see if they can sort something instead of waiting again till wednesday for another possible chat. Work have said I can use my holidays for sick pay but it means I wont have any holidays till next April so that isnt a viable option. What annoyed me is she just didnt listen. I said about the Arthritis and the Depression and Stress etc which causes me to shake and as the arthritis affects my arms its bloody hard to work and she just completely ignore it and sidestepped it saying ok...so the house rent is important. She just focussed on trying to sort rent out and now bother about any of the "issues" i went in with. At first she said speak to the bank about my loan and CC payments. No the bank says stop paying and get in debt then we will talk so its not productive and I dont want to get into debt. Hopefully the DWP tomorrow might be better and can say I can apply for Housing, Council Tax, and whatever incapacity benefit is now as it seems I cant apply for DLA and you wonder why im stressed lol
|
Date: 21.06.2011
From: Dilizjo
|
Subject: Re: New to Forum possibly PA
Hiya Lee
If you are only recieving £81 per week you are definitely able to claim Housing and Council tax benefit if the lease is in your name, people who get upto £200 per week are entitled to claim some they may not get the full amount but they still get some help. On past expeience I would say you would get the full housing benefit as your income is so small.
Good luck
|
Date: 21.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Lee, Surely your bank loan has insurance with it, all you need is your sick notes as proof and you should be able to claim and get your loan at the bank paid for normally up to one year.Get your loan papers out and contact the insurers. I know for sure if you are sick your loan will be paid for you.(you should get it back dated). Why is your bank not helping you.It does not mater if you get full pay if you are sick they take over payments. Lee listen to us we are helping with our own experiences.I have never known anyone get a loan without taking out insurance,look for your paperwork.YOU CAN APPLY FOR HOUSING BENEFIT. Lee it is hard but you must do these things a roof over your head is so important. I wish you all the Luck take care one thing at a time but be sure to do it all for peace of mind whist you are getting your health sorted.(sorry if i sound like your old headmisstress. LOL)
|
Date: 21.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
The bank in the past havent helped when I had insurance and I cancelled it years ago after they made me default on payments and then go into debt and I refused to ever do that again so the loan is something my little wage will cover without causing too much hassle. The DWP were good though apart from the first snotty girl who said I cant claim anything and then I told her to check again she asked when my SSP finished and I had to ring work to find out. However when I rang the DWP back I got the most helpfull woman going who has put a claim in form Income Support
Housing Benefit
Council Tax Benefit She said if i can call back later this month then I can claim Employment sickenss benefit as this has to be put in motion when there is 3 months or less of my SSP left. They also passed me on to the DLA who will send forms however I am unsure whether to claim as I dont think I will get anything and I dont want to damage what my Partner gets for her epilepsy. I would rather she kept her rate which keeps changing even though her epilepsy gets worse as she needs it more than me. SO I might end up leaving the DLA claim or making sure I word it correctly so she is no affected I annoyed worked didnt just extend my sickpay for another month which I said might be all I need to get back to work or at least pay me the pay increase they are still arguing about with backpay. That would just help and reduce stress instead of keep reminding me as of tomorrow I earn sod all. Least things have been put in motion just got to wait now
|
Date: 21.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Thank goodness someone has been able to help you, i am sure your girlfriends DLA will not be affected by you claiming DLA. You are both in need of dla on your own merits. You just keep at it until you get what you deserve. So pleased things are going in the right direction for you. Hope you and girlfriend are feeling a bit easier now. Take care Both of you X
|
Date: 22.06.2011
From: Dilizjo
|
Subject: Re: New to Forum possibly PA
Glad to hear things are moving in a more positive way now Lee:)
As Marlene said you claiming DLA will not affect your Partners benefit at all it is based on individual circumstances not the household.
|
Date: 22.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Been looking around the web to-day, DLA etc doesnt affect your housing benefit housing tax benefit either. It is purely for your own use for your health issues. Hope this helps.
|
Date: 22.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
thanks people I think I will apply for DLA just not the carer bit as im a carer for my GF and I cant claim for her caring for me as that wont work lol Just gotta wait now for all the paperwork to come through Got my ultrasound tomorrow to get to the bottom of stomach issue so hopefully if thats clear or something then can start to get back on my feet and work
|
Date: 23.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
GP said X-Ray was clear so just having ultrasound later to double check otherwise he thinks it could be severe IBS Just got to get work to stop hassling me now as they ring,email and send letters every other day asking for updates and when im rdy to come back to work
|
Date: 23.06.2011
From: Dilizjo
|
Subject: Re: New to Forum possibly PA
hiya Lee glad to hear X-ray was ok and hoping the ultrasound is too. Tell your work that you are signed offas not fit enough to perform your employment to the best of your ability by your GP and will be back to work when he says you are fit enough. If they are contacting you every other day even though they have a sick note they are actually harrassing you, which is not only legal but adding to your stress, remind them of this and that they should bear in mind that GPs do not give out sick notes for the pure fun of it.
thinking of you xx
|
Date: 23.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Woman rushed through ultascan and slapped gunk everywhere and caused me more pain than anything as she was so heavy handed. She said she couldnt see any stones or anything but needs to check photos..then threw some papertowel at me walked out and said see yourself out when your done. Ok the appointment was at 5:30 but show some customer service or something. She clearly didnt want to be there doing this. GP said if clear then probably severe IBS but i dont think it is as they havent checked me for H Pylori or a scope to see if there is something wrong as im sure with IBS stomachs dont swell and hurt as much as mine does.. I was hoping for Gallstones then at least I would have an answer. On a plus side had my first treatment of accupunture on NHS this morning for my neck and got some more longer sessions next week
|
Date: 24.06.2011
From: mads
|
Subject: Re: New to Forum possibly PA
Lee
I really feel for you. Your situation is not good and yet, you have great strength to keep fighting, trying to get proper answers to your health problems, dealing with your work all on top of living daily with pain. So first of all good for you.
Re DLA could you email CAB and ask them for advice with applying, (i have had all my communications with CAB via email)i would query your decision not to apply for carers allowance i am nearly sure that it does not matter if you have a carer or need one (i am thinking that your girlfriends dla should be ok)but please get it checked out.
Your work is a pain and like Dilizjo said they are hassling you. I got a little booklet from National Rheumatoid Arthritis Society that you can give to your employers and they have loads of good info on their site. I know you have PA but i am hoping that something on that site may help.
The stress of money worries, work hassles, pain and everything else that you are going through is i am sure just dreadful and i hope that you get answers asap.
Lee, my friend has pa and severe ibs complete with swollen stomach, he believes this is quite common. i wonder if there is any research on the link between both these conditions.
Hope you are feeling better tonight and have got all the gunk washed off!
|
Date: 25.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
I talk stronger that I really am but tganks for your kind words. Mu drpression is stable but is low and last 2 days ive been having stomach pain which could be coincidental how heavy and hard the ultrasound was done or just one of those days. My main thing atm is that there doesnt seem to be an end or any light at end of tunnel and im having trouble coping. It just seems more and more things keep happening health and money wise. My partner is away this weekend so think ill end up staying in bed all weekend as really cant be bothered to get up with pain and stuff
|
Date: 25.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Lee keep in there, you will get there in the end. I have been looking at IBS and it sounds a bit like what you are describing and stress can make it a whole lot worse. Just fill out the forms all of them and it will all sort its self out.Hope you get sorted with health and money worries real soon. Your companny does'nt have the right to harrass you only to take part in your welfare. Its seems they must be real lost without you. Take care x
|
Date: 25.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Work are a wierd company as I keep getting told that im excellent at my job and that all my reports and reviews are top notch but still get paid not as much as some people doing less than me at work. I think that has contributed to a lot of my stress knowing that im working for the whole time i am at work and know that if there is a lot to do I always make sure its done, never late and no errors. Its only now when I need them to help me they cant "allow" an extension. They have "adapted" my sickness record but that as far as they went and they keep asking to see my medical records which i have always given consent. I dont think they will look to get rid of me, as I am cheap labour lol and they know even after the length of time ive been off I can easily slip back into work and pick off where I left off without any retraining or assistance work wise. I did tell them I wanted to leave earlier in the year as im not being paid a wage I think refelcts the amount of work I do. I do my work, all the new colleages training, assist manager and any technical support and first aid and after 3-4 years of doing it they still pay me less than people that have only just joined the company and learning the role. SO next time work ask me "has work contributed to your condition" I am going to say yes. lol I got an apology off my managers manager who can be either a great person or a complete "Bleep" depending what day he is on..were sure he has multiple personalities. He said the managers were not aware he had contacted me and that things had been agreed etc and said that he was sorry for causing any distress to me and they only want the best for me and concerned about my health. The cynic in me thinks it company response and not really meant. Got the weekend to myself and i dont feel great but it gives my GF a break too at her grandparents back in northwest. I have spent most of the day cleaning files off my pc as i tend not to delete anything and let my pc get full. I considering just staying in bed tomorrow with laptop and dvds as only ate once today and stomach swelled but have to force myself to get up and got out even if round the corner for a paper and try small meals through-out the day or see what I eat and how it affects me.. Ho hum got drs appointment monday to discuss things and just hope by August its sorted as Im supposed to be going to a "geek" weekend with friends and really want to go and not be a problem for them with my illness and issues as its not fair on everyone else if I am like this. Thanks for all the support people , I know I go on and stuff but it is very much appreciated
|
Date: 26.06.2011
From: Dilizjo
|
Subject: Re: New to Forum possibly PA
Hey no problem Lee it helps eliviate the stress to share it:) take it easy xx
|
Date: 26.06.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
Hey lee you dont go on its good to share and get stuff off your chest also clears and sorts things in your head x
|
Date: 26.06.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Lee as you know i have followed you from the begining and i am still willing you along, dont worry going on is good. Take Care.
|
Date: 27.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
GP said irs good the Ultrasound is negative but doesnt really get us any further apary from being able to cross off a couple of things. He has started me on Metoclopramide and said give them a week as I should know if they are working or not by then and if not then off to hospital to see the Gastroentologist specialist to have a chat and see what they think. He still thinks is related to IBS though
|
Date: 28.06.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
2days into meds and side effects aint bad now but my arms are crippling me with aches, pains, pins and needles and shooting pains. My depresdion is getting bad again as cant see an end to it soon. I just want to be able to have a normal day again
|
Date: 29.06.2011
From: Dilizjo
|
Subject: Re: New to Forum possibly PA
aw Lee a big HUG glad to know side effects arn't too bad
take care xx
|
Date: 01.07.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
GP has stopped the meds already as they didnt do much and since yesterday my stomach has been hard and swollen pretty much 24/7 The GP said he could possibly try some more meds but its time to now get it done officially and have been referred to a Gastro Clinic at the hospital. He still thinks its IBS but wants the hospital to deal with it now. He said should be seen quick but could be a couple of weeks. so basically ive just got to like it and lump it and walk round like a pregnant elephant till can get some meds or sorted Im supposed to be going away in August and its not looking good. My Rhumy has still not been in touch so basically i have no idea when and if im going to get another appointment anytime soon.
|
Date: 02.07.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Had to go to the out of hours Dr again as my left leg and hip is hurting a lot. The DR didnt really help apart from saying some anti inflams but did actually give me some information both my GP and Rhumatologist havent. She said the fluid on my knee should have been drained and there is a lot more now. The pain im getting in my hip and knee will be because of the fluid on that muscle. She also said my B12 and Folic is low and has been low for a while and this needs addressing which my GP said all bloodtests are fine and theres no issue there. SO i need another blood test for B12 and Folic and either a phone consultation or face to face consulation with my Rhumatologist to actually get him to make a decision as the DR at out of hours said the reason why possible Arthritis was inflammation on my knuckles.... So why am I in so much pain etc all over??? Personally I think its Fibromyalgia as that fits better with all the conditions I have but will have to yet again push and push for someone to make a decision and stop passing the buck.
|
Date: 05.07.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Had to see a different GP who said start Naproxen again for knee and I need to speak to the other GP next week about blood tests as she wouldnt review and give me blood test form. She thinks the knee which is swollen, numb and painful is related to PA so my Rhumy has to deal with it. I rang my Rhumy and his secretary said they are working on it but no clinic time available. Only when I said been off work 3 months and GP have washed their hands with me as its a Rhumy issue she put me on the "Cancellation" list but she said dont expect a call Wish I could go private now Im getting sick of it all now. Everyday I have something painful and every night I sit here with a stress headache, crying and shaking and having a panic attack not knowing what tomorrow will bring
|
Date: 05.07.2011
From: Dilizjo
|
Subject: Re: New to Forum possibly PA
A big hug Lee:)
really sorry you are experiencing such negativity, wish I could help take care xx
|
Date: 05.07.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Lee, you are entiteled to go to a new hospital if you are unhappy with your treatment. Second opinions are always worth a go. I will only go to one of the hospitals in my area for any treatment.It is your right to say even when an ambulance is called which A&E hospital you wish to attend.
Oh my God why wouldnt the doc you saw give you form for blood test. What a waste of time making you see another doc for a blood test review. Maybe they have a different way of working we have 7Gps out our surgery and i have never come across a Gp leaving the job half done why would they it doesn't make sense. Lee it must all come right for you soon this is so bad to be treated this way. Take Care X
|
Date: 06.07.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
im requesting a full printed list of the last 12 months from the GP surgery which im entitled to under data protection act as well as askung the GP surgery to write me a referral to another Rhumy ((private)) This might be my only option and to make a formal complaint aganist GP surgery for how long it took em to get to this position and about Hospital just dragging things on and on and im stuck in Limbo not seeing anyone
|
Date: 06.07.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Got a referral at Rotherham next Friday so some good news. Dr said might have to keep going though but I'm willing to do that if i get answers and treatment
|
Date: 06.07.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
At long last things seem like they are moving for you. Keep your chin up (hard at times i know). Take Care keep smiling.
|
Date: 07.07.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
Systems dont seem to work very well for us rheumy patients do they the reality is you dont ring for an urgent appointment until your more or less at crisis point then you have to wait weeks to see someone. Not right imo and i work in the nhs
|
Date: 07.07.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
I was told the Rhumy department at York where I live is messed up and there isnt any clinic time for patients. My appointment was supposed to be 12 weeks but im in 17th now and when I rang the Department they said management are aware of the time issue and are discussing it etc but it wouldnt be solved in weeks but months and they cant give waiting times as the department doesnt have one. Hence me having to travel to Rotherham for an appointment. It does leave me with a question though about York and north yorkshire PCT. Is York Hospital understaffed in the Rhumy Dept??? or is the amount of people in York and surrounding areas with Arthritis so vast they the area cannot be maintained?? I would love to see the figures for the amount of people being treated for arthritis or "treated" as a form of diagnosis
|
Date: 07.07.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
You could always ask lee under the freedom of info act ask for numbers of nurses consultants other medical staff numbers and patient treated last year ring PALs they will tell you how to do it x
|
Date: 07.07.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Ive never seen two people give me worried looks as the receptionists at my GP surgery did when I requested my last 12 months patients records printing off. I gave them a written request and politely reminded them under the DPA I am entitled to it. They did look worried and shocked by my request. I think theyre allowed 10 working days to provide it and 28 if they need to contact Hospital etc.
|
Date: 09.07.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Sods law now that ive got an appointment next week at Rotherham Rhumy dept , My specialist has got me an appointment on 3 August.....must have been all the people ringing and bothering him. Im still going to Rotherham as I want a 2nd opinion and some meds to treat me to get in the system so I can try and go away with friends for a weekend on 5 Aug. Depending what the Rotherham guy says I can then question the York Rhumy about whats been discussed and agreed I have no confidence in the York Rhumy who just wants to keep giving me cortz injections that dont work
|
Date: 09.07.2011
From: mads
|
Subject: Re: New to Forum possibly PA
well, that is progress Lee and it is probably a good idea to go to both. I wish you well.
|
Date: 09.07.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Hi Lee, i would also go to both two heads are better than one. Fingers crossed (i say that loosely) all goes well. Take care
|
Date: 12.07.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
ended up back in A&E last night as went very dizzy and had palpatations that hurt so much. Dr said cant find anything wrong and go see GP, yeah right like they will do anything. Been in bed most of this week as the flare up on legs and arms have left me unable to do anything If i could crosd my fingers i would for my specialist visit on friday
|
Date: 13.07.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Well its 3:40am and ive tried sleeping but im so hot that im waking up feeling like buckets of water been poured over me. My head, heart everything is racing and wont let me lie down or fall asleep without waking me up My last option is to sleep sitting up on couch. Im so upset that this issue has reared its ugly head again as i thought it was over
|
Date: 13.07.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Lee, hang in there just a few more days and then hopefully you may get some answers. Make sure you tell them everything that has been happening to you. Write it down and take it with you sometimes we forget to tell them stuff. I do hope someone will get to the bottom of all of this soon. Take Care. wish you loads of luck for friday.
|
Date: 13.07.2011
From: mads
|
Subject: Re: New to Forum possibly PA
Lee, you sound exhausted and stressed out because of all the nonsense that you are having to endure. I would guess that once you get treated properly you may feel a bit more in control. Like marlene said hang in there and hopefully you will get your voice heard.
|
Date: 15.07.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
ive seen 2nd opinion and been diagnosed with fibromyalgia, given meds had exam and booked in for a bones test to see if any arthritis and a nerve test for my ulner nerve. basically did more in 1 hr than my york specialist in a yr so does that mean got to leave forum
now lol
|
Date: 15.07.2011
From: marlene
|
Subject: Re: New to Forum possibly PA
Oh well done Lee, looks like things are on the up. Hope you have a good week-end. Take Cae!!
|
Date: 16.07.2011
From: cookie
|
Subject: Re: New to Forum possibly PA
hi lee, at long last youre getting some answers, its been a long time coming, was it leeds you went to? xx
|
Date: 16.07.2011
From: Lee
|
Subject: Re: New to Forum possibly PA
Rotherham was where I had the 2nd opinion and the Dye/Bone test will be there in approx 2 weeks and then Sheffield for my nerve testing approx 6 weeks. Ive got an appointment at York on 2 August to basically see the Rhumy who hasnt done anything which should be interesting and I will try and keep it clean
|
Date: 16.07.2011
From: Dilizjo
|
Subject: Re: New to Forum possibly PA
Really pleased to hear that at last you have had someone who has actually listened and heard what you have been saying Lee:) hopefully you will be feeling somewhat relieved and happier now:) Well done:)
take care xx
|
