Date: 27.06.2012
From: Paul G
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Subject: awaiting diagnosis
Hi, my names Paul and I've just joined this forum and wish to find a bit of hope and a few answers from others who are going through or have already gone through similar. I'm currently awaiting diagnosis from my rheumatologist with psoriatic or rheumatoid arthritis looking most likely,although I also want sle lupus to be checked out.I've spent the last 2 months researching and feel pretty clued up now to what's going on,yet feel very vulnerable,frightened and scared of what the future holds. Well my story,here goes- approx 4 month ago I started getting Sharp pains occasionally in fingers and my feet,as I have had gout for 14 years I instantly put it down to that and went back on my meds for gout and detoxed my body,something id done successfuly for years. But it didn't go away this time,and I was puzzled,particularly as is never felt it in my fingers. Anyway,a month later I had continued becoming worse and felt more and more rough,just generally unwell until I had my first full blown flare up on a Saturday night. I went to a and e and was told classic signs of rheumatoid arthritis. My hands feet,shoulders,knees were the worst all pounding pain and red and swollen. I also had an awful fever. I was given nsaids and co codomol and advised to see gp who had arranged for bloods to be took. For the next 3 weeks I was in hell,an almost constant daily flare and eventualy got an appointment for a nhs rheumy in 6 weeks. I couldn't wait and seen a private rheumy in between who gave me prednisone to tie me over till I seen nhs rheumy,and suspected viral or psoriatic for to a bit is psoiris I had suffered on and off,or rheumatoid arthritis. Since then,its been 2 months of being so ill,it has progressed to my spine -neck,lower spine in particular and hips. I seen nhs rheumy 2 days ago and await MRI ultrasound scans and further bloods to be checked and go back in 8 weeks time.I have been given a steroid injection and dihydrocodein to get me by. Prednisone did nothing. I'm certain its an auto immune disease of which I'm attacked almost daily and am struggling badly, and am aware of dmards anti tnfs and bilogics,of which I'm sure is the future treatments heading my way. I've been so ill for 2 month,expect another two month before likely starting those treatments and find it hard to come to terms with.I'm sure I will still be ill until dmard etc ate introduced. Can any one relate to this,and give me hope that I may be well again one day. I have felt suicidal at times but intend to fight on.I swear to myself I will. Thanks paul. X
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Date: 27.06.2012
From: rhona
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Subject: Re: awaiting diagnosis
Hi Paul, I am so sorry to hear that you are suffering so much. I was diagnosed with Rheumatoid arthritis over 11 years ago although i have probably had it much longer. I know exactly how you feel, it is a horrible painful condition and it is difficult coming to terms with it. I believe psoriatic arthritis is similar to r/a. It is hard when you are waiting on a diagnosis but believe me when they know what you have and they give you the right drugs you will feel much better again. I remember thinking the same as yourself, that i was always going to be in pain. There is so many new drugs coming out now, it is just finding the one that suits you best but you will get there. I have just started a biologic drug called rituximab. They hope that a lot of these drugs will put the condition into remission. Please stay positive, you will feel better soon, in the meantime look after yourself as best you can, good diet, plenty rest and exercise when you can. If you find that the pain gets unbearable get back onto the rheumatologist, as 8 weeks is quite a while to wait. Take care and hope you feel better soon. x
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Date: 27.06.2012
From: paul
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Subject: Re: awaiting diagnosis
Hi rhona really good to talk to you,its been 2 solid months now of being very ill,and yes I expect it be the case for the next 8 weeks also. I do have the rheumys number given by the nurse and will be sure to ring them if necessary as I want to avoid going back to a and e like I have been (not that it helped anyway,and my gp is someone who I now know doesn't give a damn about anyone,I feel he delayed my seeing a rheumy when I was practically begging him,so will see someone else when necessary). I understand the rheumy needs further tests doing and think he genuinely cares enough too so have hope with this,but I admit I was prepared and hoping to start on something like mtx much sooner than having to wait a further 2 months.I guess I have to be patient. I am out of work at present as I was working as a senior practitioner substance misuse worker non contract with an agency,so am now claiming esa benefit and find myself virtually couch bound all day,except the occasional swim on a half decent day its been pain fatigue and rest all the way.its particularly hard as I was a fit 38 year old gym goer and cyclist. I'm hoping and praying one day soon I can resume these things. I've read up on the drugs such as rituximab and see that it may be available if others fail for me,I'm glad I'm aware of what's happening and I.may get treated sooner than people used to do ( I now know someone with ra on mtx who went 3 years before diagnosis and proper treatment). I'm glad I can talk to.others here,really appreciate it,you have given me hope :) How do you personally find your condition these days btw? Really hope u are ok? Xxx Paul x
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Date: 27.06.2012
From: Colin W
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Subject: Re: awaiting diagnosis
hi Paul not sure whats wrong , dont realy sound like Rheumation Arthritis , many reason is RA dont affect some joints like hips & spine . They sould be able to find out what is wrong with you soon but the treatment is very similar anyway . one thing , would not worry to much about the Bio/ anti-tnf drugs , they have to try immunosuppressants first like Methotrexate , myself having had RA for long time found stick to a rule about searching the internet , only search about the arthritis on good website like arthritis care & http://www.nras.org.uk/ , there is so much out there & to pick through what is relevant to you is not easy , ther is a lot of rubish publish & stuff that is out of date , forums like this can be very supportive hope they can help you soon
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Date: 27.06.2012
From: paul
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Subject: Re: awaiting diagnosis
Hi Colin nice to speak to you,yes my condition started off in hands wrists feet knees and shoulders but now includes my spine,particularly my neck and lower back,also my pelvis and left hip are particularly bad today. I have also looked at ankylising spondilititis which sonehow I failed to mention on here yet ( think its because psoriatic and ra are the 2 that have been mentioned to me by 1st rheumy I seen,but since I seen that private consultant which was a one off its moved into my spine,it wasn't prevalent back then 4 weeks ago. Either way ,im now pretty much resigning myself to a diagnosis of an auto immune disease one way or the other given the severity of it all and I'm half desperate to start on immunosupressants etc. I'll take your advice about searching the internet and look those up,I have come across nrsa website and think.its time I contact them for a bit of guidance and support. I really appreciate all your help,and will be intouch to update on how I get on. Many many thanks paul. X
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Date: 27.06.2012
From: rhona
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Subject: Re: awaiting diagnosis
Hi Paul, It is very hard, especially when you are young and should be able to do all the things that you want. Unfortunately these autoimmune diseases do tend to hit people when they are relatively young. When you get sorted out you should be able to get back to doing the things that you enjoy although you may have to be careful that you don't overdo things. I first started on sulphasalazine and was fine for about four years then i had methetroxate and plaqenil added and managed quite well until last September then things became difficult, my knees were swollen, making it difficult to walk and my feet and hands were agony, i have had many steroid injections that help temporary, i started the rituximab and hope that will make a difference soon. take care x
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Date: 27.06.2012
From: paulg
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Subject: Re: awaiting diagnosis
Hi rhona,it sounds as though in your case your immune system eventually found a way around sulphasalazine after 4 years :-/ how wonderful the human body is eh,or not. I really hope the rituximab does it for you for at the veryleast another 4 years. I'm gonna have a read up on nrsa website tomorrow on the drugs available and find out a bit more. Im so glad though to hear you had a good run for those 4 years mind,I feel a little stronger knowing people are helped. I have a goal of returning to the gym and also cycling,but will be mindful of lowering the bar somewhat,but I feel a little stronger tonite in mind than I felt earlier today.thank you :). Xx
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Date: 27.06.2012
From: bsk
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Subject: Re: awaiting diagnosis
Hi Paul, it is a shock when you first get ill like this. I spent 10 days in hospital as couldn't move some of my joints and it took about 9 months to get a proper diagnosis and start on mtx. It didn't work for me, nor Cimzia and I have been on steroids for the past 3 years. On enbrel now and trying to get steroids right down. Sounds dreadful and I'm sure you will do better than me, just letting you know you are not alone. It can be very difficult to diagnose the right form of arthritis as there are so many but I hope you get some answers and some relief from the pain soon.
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Date: 27.06.2012
From: Yasmin
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Subject: Re: awaiting diagnosis
Hi Paul, WElcome to the forum:)...I'm afraid I can't give you any advice on Rhematoid as I don't suffer from it personally, but my sister and father have both been diagnosed with it...for my sister its been a year, my father its more recent afew months...I have suffered from similar debilitating joint and muscle pains that almost put me in a wheel chair at one point...So I kinda have an idea of the future looking bleak;)p Paul, never give up there is always a light at the end of the tunnel even if for a time it doesn't seem so...alot of your symptoms are sounding like a combo of things going on...Arthritis may be one of them but like Colin has stated, considering your neck, spine and hip pains I'm just wondering if you may also be suffering from Sciatica...That is really created by the imabalance in your body due to poor posture or weak muscles in your neck, shoulders and lower back...the sciatic nerve can get pinced or enflamed creating a pull all through your lower back, throbbing and excruciating pains all way down your leg, buttock, pelvic region...especially affecting your glute muscle...you may also have a pelvic tilt problem, that can also cause similar probls...Paul is the pain in both sides of your hips and legs or one?
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Date: 28.06.2012
From: Patricia
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Subject: Re: awaiting diagnosis
Hi Paul :-) Really sorry to hear you are so unwell after being so fit and healthy. It comes as a bit of a shock doesn't it? Especially since you are so young. Unfortunately these autoimmune problems can strike at any age even in young children, which must be just awful. I can relate to your story. After having 'mild' undiagnosed problems for many years - about two years ago my body just went crazy and I had excruciating pain in almost every joint. It was unbearable and the only thing that really helped for me were hefty doses of prednisolone (30mg) and Oramorph. I am still on them both (prednisolone 7.5mg now) plus Celebrex (anti inflammatory) and minocycline. Like you it affected my spine and hips. I would say more in the groin. However, there didn't seem a part of my body that wasn't effected and all I could do was move my head at one point!!!!! I tried Sulfasalazine and Hydroxychloroquine. Can't take Methotrexate because my immune system is causing a problem with my liver too. At the moment I am trying Minocycline which is an antibiotic. I found information about it at the www.roadback.org There is also an AS site which is called Kickas (I think) which will give you loads of info It is difficult but we must try to remain as positive as we can but also realise that, for the moment, we are not the person we once were. It's about pacing ourselves I guess and realising when we need to rest etc There are a lot of meds out there for us to try plus diet etc. Sounds like you have been a healthy guy anyway and that will help you a lot. I wish you well and hope this helps. Patricia x
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Date: 28.06.2012
From: paul g
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Subject: Re: awaiting diagnosis
hi BSK,patricia and yasmin good to speak with you all - BSK hi,9 months for your diagnosis seems a really long time of suffering and is frightening-my neighbours daughter went 3 years before her diagnosis and her neck is now surgically fused which she believes is down to the delayed diagnosis and treatment but this was 8 years ago now and im hoping they act quicker for patients now.also knowing that some things such as mtx and cimzia didnt work for you.im praying the enbrel and steroids have an effect. i have just had a steroid injection on monday,my first as the prednisolone did absolutely nothing for me over the course of 4 weeks,yesterday i was very rough,but so far today it seems to have settled a great deal thankfully,but ive noticed that i can change by the hour. xx Yasmin hi,yes i happen to think a few things are happening to me all at once,as for sciatica i havent a clue really,but i havent really suffered anything in the past such as poor posture or weak muscles,if anything it was the opposite as despite being slim i was quite muscular and a gym regular. I get the pain in my neck and lower back,sacroilliac region and left pelivis and left hip mainly- what happens is i tend to feel a flare coming on in my body,wherby my body rumbles shakes and spasms and those areas including hands shoulders and knees all seem to be affected at once,and lasts hours at a time too. I hope youreself sister and father are coping ok and are picking up-i bet your family believes it is cursed with arthritis,awful bad luck- but yes,we all have to remain strong and focus on the light at the end of the tunnel,ill take strength from you all :-) xx patricia hi,yes,i have often thought how much children must suffer particularly when they dont have the physical strength an adult like i had-if i struggled so much god knows the level of suffering they have. i have an 11 year old daughter,and it scares the daylight out of me thinking if this happened to her.
I really hope you get some luck with your treatment,it shows how we are all different in reacting to whats available and what works for some clearly doesnt for others. im currently only on the steroid injection and dihydrocodeine as i have been taken off prednisolone 5mg and peroxicam and await to see whether i can get by on this till i return to the rheumy in 8 weeks time. I will check out those 2 sites too,many thanks.i guess we do have to learn to pace our selves-
i have always been a healthy person yes and eat and drink the right way,i have also found i have onbe mainly vegan and gluten free as im certain that some food types were making attacks worse,in fact iim certain of it-ive heard others swear they felt the same too? can anyone relate to this? ive cut out so much from my diet now and even though i still flare up it seems to be less severe than if i was eating wrong? ill keep in touch take care x
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Date: 28.06.2012
From: Patricia
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Subject: Re: awaiting diagnosis
Hi again Paul, There is a theory that those with auto immune have a problem with 'leaky gut' and dairy/some grains are the culprit. I am not too sure - but am going to try and work on diet. Some of my 'research' has come up with the Paleo Diet, Alkaline Diet (energiseforlife.com) and "Say No To Arthritis" by Patrick Holford. Worth a try. I am going to start next week :-) Just to say also I got absolutely no relief on low doses of prednisolone in the beginning. It was only when I went on 30mg for a number of months that the pain subsided a little. If you can manage without the steroids though it will be much better. I am now trying my best to get off them. They can cause so many problems. I needed them desperately though at the time. Dihydrocodeine did nothing for me at all. Oramorph dulled my pain so I could function. Something to think about if your pain becomes to much too cope with. As bsk so rightly says - you are not alone. Coming on here, even if you don't feel like posting at times, can be such a help. To see how everyone supports each other is such a great thing:-) Take care and will look forward to 'hearing' about your progress and getting better....x
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Date: 28.06.2012
From: paul g
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Subject: Re: awaiting diagnosis
Hi again Patricia,I've gone glue and dairy free so far which seems to have had a small but noticeable amount of relief in relation to flare up and will look into those diet plans etc thanks. So far today has been much better than yesterday in regards to flare up so this steroid injection which ever steroid it was I wasn't told may be having a bit more of an impact than the prednisolone did,I found that a waste of time completely. As for the painkillers I'm allowed up to 8 a day at present and they helped a little yesterday but other days I could have took 80 and I doubt they would have made a difference. I'm hoping I don't need anything stronger such as oramorph as is be worried about becoming addicted in the long term as I still could with dihydrocodeine,given my substance misuse working background I know all about opiods,but if we need them we need them eh. I'm glad I'm not alone,and will indeed keep posting here and update on my (hopefully!) Progress. If it helps me it may help others, I've worked for charities and also the nhs most of my life helping people and i won't change now. Hopefully karma comes my way :) xxx
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Date: 28.06.2012
From: Yasmin
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Subject: Re: awaiting diagnosis
Hi Paul:), I'm glad things have calmed down for you today...all we can do is take each day as it comes and when things are unbearable to hold on tight and believe it will ease... Regarding the posture and muscle weakness prob, Paul you don't really notice them until things become realy bad...I didn't notice any difference in my muscle strength until years later when I started to notice a bulge at the top of my spine...3 of my spinal discs had bulged out creating pressure on all the surround muscles and pushing up on my neck verterbrea, creating a gap were the disks had moved...The pains I had were mainly situated on the right side of my body...from my neck all the way down to the sole of my right foot...over time it spread all through both sides, each knuckle or joint in my hands and feet had a different level of pain and tenderness...Thankfully I am blessed with a very high pain threshold and kept it hidden deep within me, I didn't wantanyone to see how much pain I was in, but at my worst I felt like I was being physically tortured none stop...I kept telling myself this isn't real I will wake up from this ordeal and find out Its all just been a nightmare...Paul like yourself and patricia, I had the very same symptoms in the very same places...I am amazed when I read everyone posts about how their docs have helped them or put them on meds early on...apart from Ibrufen I wasnt really given any help...I had to beg my G.p to refer me to a Physio...I had excruciating physio for 2 years but it made no difference...I had various other therapies through the years eg: accupuncture, reflexology, cupping, deep tissue massage, they all took the edge off but didn't treat the root cause...during a reflexology session about a year ago I was told that my left leg was a couple of mm's shorter than my right, had my physio not picked up on this as with joint pains the first thing a physio should look at is posture?...When I told my physio about this he wasn't happy but tried in his clumsy way to show me that my reflexologist was wrong...previously my physio had told me that my right shoulder was very tight and pulled forwards seemingly higher...Something deep within me told me to have a look at myself in the lengthy mirror without my clothes on just to see if my posture was as it should be... To my amazement I could clearly see that my right shoulder was higher by a fraction and I knew for sure that my right hip was higher too as there was a subtle twist to my body...not that my physio ever listened or looked at me while in a standing position...I worked out a way to really find out if the right side of my body was mis-aligned...on finding out the latter I began to re-balance my body by doing a very simple exercise...within a couple of days I felt a change in the level of pain and stiffness in my neck, shoulders, lower back, pelvic region and my leg...it took further couple of weeks to see a dramatic change...I am not a 100% free of pain but I am able to particpate in life again and keep to my limits...I have hope again and I am grateful for all that I've been through Paul, because if it wasn't for these experiences I wouldn't have been able to muster up the strength to make the changes that needed to be made...these pains became my motivation to become the person I am today...taking a negative and turning it into a positive...we can only feel anothers pain if we've really been there ourselves...I am trully grateful for this journey, as what i have learnt through this journey I could not have learnt otherwise... You'll probabley notice I like writing long posts, sorry if its too much;)p...Karma comes in many shapes and forms Paul, keep your heart and mind alway open and it will come knocking on your door very soon:)! Take care...Have a peacful night!
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Date: 29.06.2012
From: paul g
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Subject: Re: awaiting diagnosis
hi yasmin, wow its amazing what youve gone through (and trust me i like long posts,im usually the same lol- the more detail the better in my book it creates a bigger picture!). Ill be keeping all this in mind sciatia et al as i wish to cover ever possible angle on what my condition is,its the only way to get the right diagnosis treatment and earliest intervention. i have like you used acupuncture,cupping and deep massage- over the last few weeks ive dipped into my savings and visited a chinese therapist which has helped a little,if only a few hours relief (im a big believer in alternative therapies and am a qualified 5 point auricular acupuncturist myself through my work.but my finances are drained now,and im gonna see if i can get some similar thearapy via the nhs next. yeasterday wasnt too bad until the night time,and ive hardly slept,with most pain down my spine this morning,but if it gets no worse i will push myself for a swim at my local leisure centre a ten min walk,or limp depending on the pain ;-) ive just paid for a six month season ticvket and if i can do a gentle swim 3 times a week thats probably the best thing for me,not too taxing as long as i dont go into a major spasm.....though the lifeguards are on standby lol. :-) heres to keeping our hearts and minds open for that karma eh :-) have a good relatively pain free day ! xx
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Date: 29.06.2012
From: Yasmin
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Subject: Re: awaiting diagnosis
I am so suprised to hear you've tried accupunture, cupping and deep massage, not many men use these methods:)....What type of cupping have you tried, theres 2...one is where just the cups are used, ending with a massage, the other is when the cups are removed the sight of the cupping is bled...releasing bad blood basically? It i so nice to be able to write openly without worrying sometimes that you may be annoying people with lengthy writing;)ppp You seem to have a very open mind about treatments that is a plus, which will eventually get you to your destination far quicker... I hope today is a better day for you Paul...Swimming is definatley the best exercie for us, if we can swim;)p x
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Date: 29.06.2012
From: paulg
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Subject: Re: awaiting diagnosis
Hi yasmin,I didn't get to go for that swim,its turned into a bad day since around 2pm and flared up badly :( I've even rang rheumatology dept helpline but its gone to answerphone and I've had no reply.unreal,what's the point of a helpline? I really feel low today and think I'm gonna really struggle to get through the next 8 weeks,if anything I'm getn worse,particularly my spine. But me and my dad are gonna badger the phone come Monday morning,the steroid injection and dihydrocodeine aren't doing much good. Have to just drag myself through weekend somehow eh. As for the therapies I had 6 sessions of acupuncture followed by deep massage of my back and ending in cupping-cupping was 8 cups left on for 5 mins or so and then removed,I had several black welts bruisewise almost each time.as j say I'm a firm believer in these remedies,and have used similar in the past when I first suffered gout at the age of 26. I also have herbal soup type remedies from them,steroidal type properties I believe? My family think I'm mad and wasting my money.they forget I'm a qualified acupuncture practitioner too even though I practised on my mam n dad when j first qualified ! It does help I recommend to anyone.I just wish I had more money to spend on it all ! My dad and brother say and think its all nonsense. But they fall into the narrow minded trap,not me. Xx Well ill finish watching the tennis on tv,pop my pills and bed for me.
Nite nite all xxx
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Date: 01.07.2012
From: Yasmin
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Subject: Re: awaiting diagnosis
Hi Paul:), Sorry, to hear you've had a bad day...at times like this, I've just had to grit my teeth and have faith that it will ease eventually somehow, imagining myself holding on a rope decending form the sky...sometimes it was 1 rope other times when things were too unbearable I had to visualise 2 ropes, winding them around my wrists holding myself up...sometimes we have to rely on the 'Man up there;)p' to carry us through... Yes:) I also had mounds arupting all over my back and shoulders when the cupping was finished, not nice to see but as long as it helped they didn't really matter ...It easy for some people to simply put their faith in the orthodox meds because it takes alot of the hard work of having any treatment...for them they put their faith in the G.ps and specialists to put them right without having to put any hard graft into it themselves...At times I did wonder if they were worth it my self as like you said they're not cheap...but I will say during these therapies I recieved something far more precious to me and that was meeting some really wonderful and spiritual people who touched my life in one way or another...even if the therapy didn't help me, talking to the therapists helped me understand the root causes and how they effected my mind, body and soul...Illness develope into the physical realm after they're into dealt with at an emotional or mental level...I learned to listen to my own body and understand were I went wrong and what it needed now on all level to heal...I learned to embrace thoughts and ways from people from all walks of life... I have always had this curiousity about life and how things work so to me going for natural ways has always felt more natural than going to see someone who just hands over a presciption within 5 mins of talking to you, they never really have time to listen to you properly or talk to you as a whole person rather than only wanting to treat the only symptom they see at that time... Most of the work has to be done by oursleves, we are the only ones who can really know how things are and how they effect us...It is easier to think outside of the box, when we're too close even we can miss seeing or understnading whats happening to our bodies... HOw are your Gout symptoms, are you on meds for them too?...By the way, the same happened to me when I phoned the helpline when my dad was finding the meds he was put on were causing him problems, I waited for a couple of days no response, than I emailed them...Waited another couple of days until someone called oppologising for the delay...So it seems its happening quite a bit,they really need ot sort this out, there is no point to having support thats not there when you need it...Paul, if you have hteir email, I would them today, don't wait until MOnday...Listen I've got to go...I pray you the pains will calm down and you will have a better day...warm wishes...x P.s I hope you don't mind me asking it seem you are able to access the therapies very easily, are in the Brinigham area by any chance?
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Date: 02.07.2012
From: Yasmin
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Subject: Re: awaiting diagnosis
Hi Paul, hope you are feeling somewhat better this morning, if not its Monday morning get your dad on the fone to the helpline and email them too, this way they will at least respond to one...by the way the helpline is automated you won't get anyone on the other side, all you can do is leave a message yet again and they will have to get back to you.... If its possible try and lie in a hot bath with a good handful of Epsom salts should help relax the muscles...I hope I'm not getting too personal but the other thing that can really relax your spine is a gentle massage of the back of your neck, shoulders and all down both sides of your spine, just gentle movements starting from your neck down to your lower back and out to the sides...Aromatherapy oils will enhance the relaxation but if you don't have any just use either olive oil or a good moisturiser...get someone to do this for you it will make a world of difference for you, I guarantee it:)!... I hope you feel better soon...x
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Date: 02.07.2012
From: marlene
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Subject: Re: awaiting diagnosis
Hi Paulg, can I ask you if you swim in cold water.Although swimming is good for any arthritis if the water is cold it can be a nightmare to our bones. I suffer with OA and have been advised not to swim in water that is to cold. I believe this could possibly be the same for you check it out.
I hope your flare is settling for you,
Take Care x
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Date: 03.07.2012
From: paul g
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Subject: Re: awaiting diagnosis
morning yasmin,morning marlene, sorry took so long to reply,last couple of days has been pretty bad for me,but ive managed to get somewhere- I tried the helpline again and had no joy so rang PALS the NHS patient advice service and told them whats the point having a helpline if no one answers? well,i got a phone call 15mins later from a nurse on rheumatology. I explained how much im struggling and how my chest pains and neck are now affecting me (i keep flaring in my joints but in the last 2 weeks i am now getting pains across my chest and my neck spasms to which i struggle breathing properly,its so frightening.i said there is no way i can wait 8 weeks before seeing the rheumatologist again.i got a call back giving me an appointment a week on thursday which is better than none,the nurse was very sympathetic and i had a good chat to her. yasmin,as for my gout symtoms they are ok at present but my uric acid levels were quite high a few month back,which makes me wonder whether having that combined with stress which i had in abundance at the time may have triggered my current condition.im now almost convinced it all played a part. I live in sunny (lol) hartlepool btw,near middlesbrough north east a short hike from brum eh :-) marlene- the swimming baths i use is heated,only mildly but makes a big difference as i wouldnt fancy jumping in otherwise,it really helps.i havent been since thursday last week dur to being pretty unwell,but im gonna try for 12 noon today if i can,my hands arent all spasmed yet so best chance to do a bit x
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Date: 03.07.2012
From: marlene
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Subject: Re: awaiting diagnosis
Hi Paul, So glad you have a warmish pool to swim as I know this is so helpful, all our swimming facilities are unheated.
So no good to me at all.
Amazing how some departments jump over mountains to help when you contact the advice service. I had the same thing happen when I complained to them over a mix up it was all sorted within an hour. I had been trying for three weeks with no response.
I have had surgery for OA in the bottom of my spine and now I have problems at the top of my spine. This can cause me pain in my chest and was admitted to hospital over night in the heart ward, scary but it turned out to be skeletalmuscal disorder ( spelling?) usually caused by over doing it.Pain killers were the order of the day.
Take Care and I do hope you get sorted soon.
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Date: 04.07.2012
From: Paula-R
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Subject: Re: awaiting diagnosis
Paul...your having a terrible time at the moment. I am so lucky with my RA nurses. I have now learned that if I ring around 3pm a nurse in normally in the office. In the past when I have left a message, depending on what time of day it is I have had a call back the same day or the following morning. Just pleased to see that you have now got an earlier appointment. I have to disagree with what Colin said in his first answer about RA not affecting hips and the back. I know it defiantly can attack the hips, know lots of people who have had hips replaced due to RA and different consultants have views on it attacking your back. I would say that with it being a systemic illness it will affect virtually every joint. Marlene....I have read with interest about you having chest pains. I started having chest pains a year last May. Long, long story here, I was sent to A&E by GP, had blood test done, was admitted because they thought it was a blood clot on my lung, me on knowing a chest infection had been ruled out was protesting that it was a pulled muscle. A consultant who came to see me on the ward that evening said that my rouge blood test results were because of my RA and she agreed with me about a pulled muscle and I went home. During the last year and a bit it's never gone away. It's always painful if I take a deep breath in, I have various degrees of pain from really bad stabbing pains to pains in my lower ribs. I can't laugh without it hurting, have had to learn to sneeze differnet, any movement I make with my rib cage it hurts. I have seen two GP's in this time and they both think it is costocondrithis (spelling) and I have google this and I tick every box. It is inflammation of the cartilage in your rib cage. Consultant thinks not, I have three different diagnosis off him.....muscular pains......costocondrhitis pain syndrome (what that means I have no idea...and the latest one.....stress!!!!! I have found looking back at my blood results (I have RA and am on MTX so I have a record of them), it is at it's worst when my CRP is high. I know it's nothing serious because if it was something would of happened by now, but I would just like my doctors to agree on what it is.
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Date: 05.07.2012
From: Yasmin
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Subject: Re: awaiting diagnosis
Paul, Anxiety coupled with the problems you are facing can cause tightness in the neck and chest muscles,constricting your breathing...try deep breathing exercises, breathe deeply though your nose and diaphram, hold for a few seconds and visualise breathing out all your stress and empty out your stomach fully...this may initially give you little bit of a floating feeling but that will subside the more you do this...breathing right is very, very important for our bodies to function on openly and with ease...I went through the very same and it is frightening to say the least, but know this is just your body telling you it needs help, its too overwhelmed... I felt this was due to you maybe holding too much tension in your neck and shoulder muscles...This is why I mentioned the massage...When I was going through this, I thought something was really wrong and it kinda scared me to think what that maybe...I knew it wasn't heart probs as the pain was all across my chest wall and across the shoulder blades , neck area...I felt like my spine was literally being crushed between my shoulder blades...very similar to being in a vice....my breathing became really shallow, at times I would feel like I would pass out...G.p said nothing wrong with you, everything fine, passed me a batch of Anti depressants;)p... I've never felt anti depressant were a real answer to the situation, i've never taken any...One day my sister found me in agony...she popped over and gave me a massage, just a gentle massage, but gave me a good going over...I ended up with a temprature as my body started to unwind...but the very next morning, I was a little sore from the whole experience but as bright as rain otherwise...I couldn't believe the difference it made...massage therapy is the most enjoyable and healing therapies one can have...it not only heals you physically but gets to the deeper issues inside too...Over the years I have massaged alot of my relatives (female of course)...they've all not only enjoyed the experience but i've got them on their feet when they've been struggling with similar pains etc...In the West massage is something thats either seen as something that a couple do for one another or something the well off do in their spare time as a luxury...but in the Eastern countries massage is a part of life...From cradle to the grave:) Paul if your Uric Acid levels are high what do you do to balance them out?...Do alkaline food help to reduce the Acid?...And is ther a differnce in the type of pain you suffer from Gout to your other pains...how do you know if you're Gout is playing up or these are the other Arthritic pains? P.s, there have been a couple of times I wanted to call Pals myself in the past but never got the courage to make the call...I always felt I didn't want to create problems for anyone regardless of the situation...how do they work?... Sorry, too many question I know...curious soul, what can I say:)...x
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Date: 05.07.2012
From: Yasmin
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Subject: Re: awaiting diagnosis
P.s, Hartlepool, Middlesboro...isn't it amazing that you can live in one place and not even venture to certain areas around...It seems that makes us nieghbours than:)... Though i'm not very worldy, Birmingham has the largest diverse community that I know of, were it is far easier to access a whole variety of therapies without a problem...x
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Date: 07.07.2012
From: paul g
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Subject: Re: awaiting diagnosis
Hi everyone,sorry took a few days to reply as I've suffered a fair bit- I've had real trouble with my neck and my breathing whereby my neck seems to go into spasm,and I've been to a and e a couple of times as I can't help but panic about it.I'm certain its not anxiety related as I hadn't felt anxious when its happened,mainly because other flare ups have been less regular over the last week thankfully. However when I do get a flare my chest pain often starts and hands hip etc become affected,but then it builds up.in my neck. I'm very frightened and panicky when it starts restricting my windpipe and I can't wait till Thursday when I go back to see Dr ray the rheumatologist. I've felt on a few days that I was starting to.pick up a tiny not and then this starts happening regularly its driving me insane and knocks me to pot again :( Marlene/Paula im taking everything on board and in particular that costochrondroitis- I wouldn't be surprised at all if that's what's going on in my neck tbh. Yasmin- it is a small.world too btw,I'm currently going to north tees to see Dr ray,but expect to see him at hartlepool aftet Thursday onwards. Do you use north tees it James cook ? Take care everyone. Xx
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Date: 07.07.2012
From: marlene
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Subject: Re: awaiting diagnosis
Hi Paulg, I hope you get sorted soon, paul I know this may sound a bit daft, but write a list of everything that happens. I always leave and then say to myself I forgot to mention this or say that. It is so easy to get on one subject and leave out the little bits. I find sometimes Drs are a bit dismissive. So I always take a list a let him see I am referring to it.
I can understand you panicking with regard to your neck spasms, what do they say at A&E?
Take Care and rest up when you can.xx
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Date: 09.07.2012
From: Yasmin
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Subject: Re: awaiting diagnosis
Hi paul, Sorry to hear you're still unwell...I pray the days fold for you so you can see DR. Ray as soon as poss...NO, my father sees a Doc. Raza at City Hospital in Birmingham... Like Marlene, I'm curious did the Docs at A & E not give you anything for the spasms to calm down until your appt on Thursday? Please keep us updated when you feel alittle better...In our thoughts and prayers..x
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Date: 12.07.2012
From: paulg
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Subject: Re: awaiting diagnosis
Hi everyone,sorry yasmin I meant your father ,I'm not thinkn straight these days! I'm sat waiting to see Dr ray now for my appointment and quite apprehensive,only natural I guess eh. As for a and e I wad put on a salbutimol nebuliser and given a paracetemol drip and given diazapam for the muscle relaxant properties I believe. It dis help for a few hours. I feel really tight in my chest today and have a lot of pain in my lower spine and less severe pain in hands and wrists. I'll update on what happens with my apointment. Hope everyone is ok ish today btw !? Take care. Xx
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Date: 12.07.2012
From: Yasmin
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Subject: Re: awaiting diagnosis
Paul, I know you meant my dad, the 'no' was in regards to 'do you use North Tees'...So in reality you didn't write anything wrong, my answer was alittle brief;)p... I'm suprised you're still having trouble with your chest and spine, you're in the right place so hopefully Dr. ray can sort you out today and have some answers...Look after yourself until you can get back to us...thoughts and prayers x
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Date: 14.07.2012
From: paulg
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Subject: Re: awaiting diagnosis
Hi everyone,how's yourself and your dad doing yasmin? X Well,have you ever had the feeling you were nothing but a hindrance to someone?! Seen Dr ray and I was in there and out and felt as though I was a naughty schoolboy for having the temerity to request seeing him before having had all the scans done. I wanted to ask loads of questions but was told he can't do anything until the results of the scans were in his lap. I told him I had to come back because the chest pains had become severe and my throat was tightening making breathing difficult. I was told its likely that its not related to my condition but that I have probs developed asthma from the use of nsaids!? Fantastic. So I now have an inhaler and I'm also on amitriptayline too. He did say he suspects fibromyalgia but needs the scans,and this may be related to the psoriasis etc. He then said once the results are back he may be able to treat me aggressively and not to worry and was told to request salbutimol inhaler from me,after that I was virtually shunted out the door. I was told at my last appointment to do a daily diary to record my symptoms etc,so I downloaded one from the nrsa website which is very good to use,details scale of pain and fatigue and stiffness and I recommend this for people to use-anyway I handed him the diary he glanced at if for 5 seconds and gave it back to me! I honestly felt as though he was cheesed off with me. I'm only going there because I'm ill :( I understand I have to wait but I've so many questions and things to ask I don't feel he is listening. but I go back on the 13th august by which my scans will have been done. ill have to see what happens then. anyway,yesterday I went to my gp,not my regular gp but this new one actually wanted to listen to me and I will stick with her from now on. I got my inhaler and then I asked my questions which I want to ask Dr ray as I feel like very little has been explained. I had already looked up fibre myalgia before and a lot of it made sense but its a condition that doesn't involve inflammation in the joints. I said to the gp ' Dr ray mentioned aggressive treatment' but I found no aggressive treatmentmethods for this? its a case of pain management and that's about it which frightens me more. she said with my MRI scan in the sacro illiac joint its clear he is looking for ankylising spondylitis- this is something I thought was a big possibility of me having but he has not mentioned this at all to me ! if inflammation is found and I'm having ultrasound on my hands and xray too then diagnosis of auto immune disease such as AS is likely. I got more info from gp and think its all a bit wrong,Dr ray has hardly explained things or let me ask questions. I hope this isn't a pattern of what's to come otherwise ill request someone else,and I don't want to. anyhow,as it stands though the picture is a lot clearer now and I admit I'm almost desperate now that they find inflammation so I can receive aggressive immunosuppresant treatment as realistically it gives me my best chance of remission or getting it under control at least. I darent think of being diagnosed with fibromyalgia alone as I just don't see how I can get any better on pain management and is it ant convulsive drugs ? such as gabopentin? I've read on another forum on how many people with fm sreallytruggle
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Date: 14.07.2012
From: marlene
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Subject: Re: awaiting diagnosis
Hi Paulg,
Sorry Dr Ray treated you this way, it seems to me many Drs behave this way as they have seen and heard it all a million times before, but they need to understand when it is happening to us we feel so alone.Yes they do have to wait for results to make a final diagnoses but a little bed side manner would be so beneficial. When my back problems first started, I saw such a rude man who shouted if you were my patient you would never have had surgery for Tennis Elbow. This surgery I had 12yrs previous and I just sat there wondering what this had to do with anything. When I went to my own GP and told him, with the the words I think he doesn't like me or doesn't believe me, thank Goodness he(my GP) replied Or he doesn't know what he is doing.He requested I see a new Rhumy guy. From that day I moved forward although OA is not curable and there is no great pill they can give me at least I get all the help Physio Hydro Pool Pain meds and best of all someone who actually makes me feel he cares.
I hope when your results are back you get every bit of help you need
Take Care x
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Date: 14.07.2012
From: paulg
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Subject: Re: awaiting diagnosis
Hi marlene,hope u ok today x. Yeah,i guess it is because they hear it everyday and sort of become detached from the patient somewhat. Tbh it hasn't surprised me as I've seen it often as I worked for 8 years as an aneadthetic theatre support worker at north tees until 2005 and often found myself apologizing or explaining to patients for some drs lack of people skills. Having worked with the good and not so good consultants,registrars,sho's and junior docs etc I know exactly what I'm in for. And so far Dr ray has asked questions but not really listened to me it answered mine. So I need to see how this Dr patient relationship develops,hopefully he does his job,helps me and I'm a winner,but if I need to find someone who will actually listen to me first I will do so. Especially as I feel I have so much relavant info regarding my condition,which can only help surely. I'll see what happens on the 13th august I guess and take it from there. Oh and while I'm at I've just discovered this morning that my psoriasis has broke out on my elbows- I've never had it anyway but on the top of my head and a bit on my chin and face a little. In a way I'm thinking (hopefully but not counting my chickens yet) that this could actually be a good thing? As it makes the possibility of psoriatic arthritis more likely is imagine? Mad as it may seem,but I really am thinking I'm better off being diagnosed with an autoimmune disease and not FM (even though I could have both I guess) but because I feel the aggressive treatments gives me my best chance of a recovery of one form or another. Method in the madness I guess. Take care xx
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Date: 14.07.2012
From: marlene
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Subject: Re: awaiting diagnosis
I also suffer with Psoriasis albeit mildly, so I know this can also be a nuisance. Before I was diagonosed I was worried that I may have PA rather than OA, but I suppose you could say mine was a better outcome. Although on my bad days which seem to be every day at the moment,when I only have pain meds that don't help much, I think I have drawn the short straw. Then I read the posts on here and the young mums struggle it brings me back to reality.
I hope you get all your answers on the 13th
Take Care and keep us posted x
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Date: 15.07.2012
From: paulg
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Subject: Re: awaiting diagnosis
I know marlene,hopefully these bad days you are getting become less. I'm convinced that diet btw is having a major impact on my condition and am now trying to stick with this paleo diet,I've found it difficult but am gonna have to be strict with myself as I'm sure it helps. do you use similar? x
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Date: 15.07.2012
From: marlene
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Subject: Re: awaiting diagnosis
I have to supplement vitamin D as this always is very low, (lack of sun)I have a once a week flush with capsule then each day Calcichew Drs orders. I find dieting such a chore so I just try to eat healthy, plenty of fish (oily) veg and fruit.
I have tried many different things but OA is beating me. LOL
I try to keep a sense of humour and enjoy life as much as I can'
To-day I have been sorting a winter holiday to the Canaries to catch a bit of needed sunshine.I book a villa then a flight much cheaper. I need a villa because I hate the stares when I am struggling with stairs and chairs and the likes, deep joy.
Going back to subject I don't know much about the diet you are on so I am going to research it.
My pain meds are running out and my back and shoulders are throbbing. I have a GP appointment in a few weeks so I am going to ask about this new meditation you can get on the NHS. Some of the guys on here say its good. I will give anything a go, why not?
Well thats enough waffling from me you take care and chat soon x
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Date: 16.07.2012
From: Yasmin
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Subject: Re: awaiting diagnosis
Hi Paul:), Sorry I've had the flu bug all last week, my body was already run down from constantley running around and it got me good:)!...Its very rare that I suffer from flu, only get in once a couple of years but than it can lasts for weeks and maybe months...I am alot more myself now;)...Dads symptoms seem to have calmed down since the Methorexate jabs started, his not as bad though his stomach is still up and down alittle...I believe he suffers from IBS too...He stresses constanely... Paul, I was actually waiting to hear some really good news, I thought for definate the rheumy would have sorted you out pronto, but again I suppose they do need to be sure they no what they're really dealing with...Suddenly everyone seems to have Fibro, I was told I may have Fibro because they ruled everything else out...the only thing they ruled out was RA. There is no proper diagnosis for Fibromyalgia so even if they diagnose you with it all they can do it put you on Anti depressants and treat it as a mental health prob... I said thank you, but no thank you, I will find a way through without poisening my body further...So like yourself I do all I can to help myself, through diets, excercises both physical and mental...I rather follow natural treatments and try to enhance my own health as much as possible...With tightening of the neck muscles and breathing problems you do need some specialist treatment, that may only come in orthodox meds...Does the inhaler help in relaxing your chest and neck muscles, has it made any difference...how are you managing? A couple of weeks for your appt, I pray things turn around for you, try and de-stress as much as you can...tension can be our worst enemy most times...x Hi Marlene:), It seems the whole of Britain is on Vit D at the moment;)p...though it does make alot of difference to my energy levels, epecially when SAD sets in...the days have been so dark and cloudy of late, it effects me quite badly on an emotional level...Its good to hear you're hoping to go to the Canary Islands end of the year, it will do you good on all levels...Good for you:)!...Marlene, have you ever tried visualising your pain away...visulisation can be a very powerful tool, it just needs focus perserverance and faith...the latter can be difficult to achieve in pain but it can be done...x
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Date: 20.07.2012
From: paulg
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Subject: Re: awaiting diagnosis
hi everyone,sorry ive took a few days to reply,ive been suffering quite badly particularly with my neck and my head is all over the place.im trying real hard to be positive Iam,but struggling a fair bit.Ive also changed some meds again after being back to my gp and use tramadol instead of di hydrocodeine,im yet to see if i get any benefit from it. Marlene,yes i used to have a very balanced diet anyways,so its a good job i love oily fish and veg,cos thats mainly what im eating for a main meal and im eating lots of fruit too,i find they arent setting me off on major attacks as im certain some foods seem to do so trying hard to stick with this paleo diet,though i have lapsed a bit as its incredibly strict,but ive got to keep thinking that if i dontstick with it im virtually poisoning myself. It doesnt seem to have stopped my attacks given the last few days but i do think i would be worse eating stuff like gluten,and processed foods for example. I hope your villa and hol goes well!,do you manage to use the swimming pools btw or are you unable too? as i cant think of nothing better than a bit of swimming,gentle excercise with the sun on my back.a bit of winter sun is always wecome eh. yasmin,really hope your flu bug has disappeared by now? im glad your dads symptoms have calmed down a bit it shows that the methotrexate must be doing some good. as for his stomach is it definately IBS he suffers with? has he had it checked out? as im not totally sure but things like crones and coelics disease are auto immune diseases of the bowel etc which i think people are more prone to? im not trying to panic anyone mind!!,its just that id like to be sure myself as if you dont question things the docs will gladly just brush things off. as for good news,nah,not yet sadly :-/ ! but yes,fibro myalgia seems to be often spoke of lately,i even read an article a few weeks back in the daily mail and i thought i hope its not this ;-/ but as for the meds im taking amityptaline now which dr ray gave me at last appointment as he mentioned posiibily of FM,and after a bit of resaerch it seems its a case of amitryptaline and someting like gabopentin which is used for epilepsy patients too for seizures and pain relief,but some people diagnosed with FM say the meds are useless :-/. I hope its not what you have of course,and im hoping i havent either,but i wouldnt be surprised if i had something like psoriatic arthritis or ankylosing spondylitis with FM knowing my luck. as for the tightening of my neck-its actually started up again as im typing this so will have to get my inhaler in a bit,i think it does help a little but not a great amount,and its whats made me so frightened and down in the last few days,it just comes and goes without warning and its the same for all my symtoms,even when im calm and not anxious,all a bit mental and no wonder my head is all over the place :-( Im taking lots of vit d and multi vits and i think i need to get out more,but the sun is never out much in the north east!, this time last year i was on my bike doing a good few miles cycling in a bit sunshine,thinking about it makes me feel worse,but what can i do? at least i only have 3 weeks on monday to see dr ray again,i might get some answers,and praying i get some effective treatment too. anyways,have a nice weekend everyone,its a bit dryer today,hope it stays like this eh :-) take care xx
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Date: 20.07.2012
From: marlene
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Subject: Re: awaiting diagnosis
Hi Paul, nice to hear from you, sorry you haven't been so good.
I also can't wait for some sunshine it really does help me. I lack vitD badly and this mainly comes from the sun. I have been taking a supplement prescribed by my gp. Going to see him next week for another chat and more bloods.
The villa and flights all booked not going until November, a bit of sun to set me up for the winter. Yes I do use the pool, I do the excercises the physio team taught me in the hydro pool and gentle swimming.
Take Care and keep your chin up xx
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Date: 21.07.2012
From: Patricia
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Subject: Re: awaiting diagnosis
Hi Paul - just to say if things don't go well with Dr Ray then I see Dr Reece at Darlington Memorial who is VERY easy to talk to and does listen :-) Only my opinion of course but I have found him to be very knowledegable, easy going and 'allows' his patients to be involved. He is brilliant for me!!! Hope that you are having a better weekend. It is so difficult to get a diagnosis sometimes. Mine took many, many years and I had to get completely debilitated and bed ridden before anything was really done for me. Auto immune is really difficult to diagnose sadly. Take care and hope this bit of info helps for your future....x
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Date: 21.07.2012
From: paulg
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Subject: Re: awaiting diagnosis
Hi Marlene,glad the hol is all booked for November and it'd great that u get to do a bit of swimming etc :) I didn't realise u could vit d supplements prescribed,so ill remember that if as it costs me a small fortune for mine,ill be asking my gp! Hope your appointment goes well btw And thanks,yes u take care too :) x Hi patricia,ill certainly remember Dr reeces name and make a note of it,darlo is obviously just a short journey down the A66 for me,I'm pleased u seem to be getting listened too and more importantly helped :) Yeah,I know that auto immune is a bugger to diagnose and treat,just our luck eh :-/ but I'm really trying to stay strong and fight. I've managed to visit my girlfriends for the weekend,lives out of town a good 45min away,she has been an absolute pillar of strength for me and has been visiting me most of the time with me hardly been well enough to drive,but I've managed to do the journey and have been for a nice walk up hardwick hall park with her jack russel. I'm full of pain meds mind,but its been so good to get out of my 4 walls and see some sunshine for a change. Worn out now mind and back on the couch,ah well at least I did a bit eh :) Take care and enjoy the sun whilst its out eh :) xxx
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Date: 21.07.2012
From: Patricia
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Subject: Re: awaiting diagnosis
Hardwick Park is nice :-) Will have been good for you mentally to get out and about. If pain meds is what it takes, and it certainly does for me, to get us out and moving then I am all for it!!! Like you, I was very fit and active before this all started and now am just grateful that I can walk, albeit it slowly, drink tea and eat cake!! For me, the most important part of my recovery (and I am still only functioning at a basic level), apart from the pain meds, was my husband. Like your girlfriend he has been absolutely brilliant. How fortunate are we?? I am well aware that not everyone has someone to help them through. I am Rheumatoid Factor and Anti CCP negative so my auto immune took years to diagnose. I knew something wasn't right about seven years ago though. Got diagnosed two years ago. All I can say is don't give up. YOU know if your body is ill or not. There are Consultants out there who will listen to you and will try to help you. Dr Reece is one of them. A very forward thinking kind of guy. I wish you well Paul and your girlfriend. I think it is really hard for our partners to 'pick up the pieces'. Yes, enjoy the sunshine. It has been fab here in Darlo. Be pleased with yourself that you got out. I know how much effort that takes. Rest and take care now...x
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Date: 22.07.2012
From: marlene
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Subject: Re: awaiting diagnosis
Hi Paul, I don't know if they precribe unless you lack vitD. I have one capsule of Vit D weekly topped up with Calcium and vitd combined two daily. I am sure you can get Calcicchew-D3 Forte anyway, every one I know that has Arthur of any type has this. I don't know if this is just a postcode thing.
No harm in asking. Best of luck I know the vits are expensive to buy, I paid for them until my bloods showed how bad I was lacking vitD .
Take Care x
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Date: 29.07.2012
From: paulg
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Subject: Re: awaiting diagnosis
Hi everyone,been a strange week ay my end,been a fair struggle with both body and mind. As im expecting a diagnosis of fibromyalgia if my MRI etc come back with no other findings I've been trying to come to terms with a lifetime of pain,coupled with a desperate attempt to do anything to help myself. That Friday night I was in hell with the pain and I kept thinking it started an hour or so after treatise. Ive long felt most foods have played a big part in flare ups so I decided to fast,and did so for sat and Sunday and see it it has any effect on my symptoms. I last ate and just drank water from tea time Fri toonday morning approx 68 hrs. Drastic yes,I lost 6 more pounds of which means its 2 stone since illness began,but did I feel any better? The answer is yes. My symptoms did ease off,not completey but a big difference. I then ate on the Monday as normal,gluten free breakfast cereals and toast and tea time was chicken breast with veg. I flared up badly again,my breathing and windpipe in particular tight,and was so so low I wondered whether I want life like this for the next 30 years. I had tried different diet plans,but still suffered and wondered if all foods were just bloody poison to me. I kept searching t Tinterweb and found a forum on fibromyalgia UK which discussed diet plans- most people swear there is a link and have tried different diets to no real success. I followed a link to.a daily mail article on one of the posts to a gp who self diagnosed her with FM and had found her symptoms had all but vanished after following a low oxelate diet plan of which she had read of a potential link to FM sufferers but which wasn't a sure thing. Basically oxelate is supposed to be a natural pesticide found in most fruit and veg,which seems to aggravate animals of all types if consumed in large quantities. There was a list of low /medium/ high etc oxelate foods so I printed it off and thought is have to give this one a try too,but didn't have much hope. However,its been 6 days now,and my symptoms have significantly improved! Im still having red knuckles but less and less pain,spasms and fatigue. I'm quite gobsmacked.this is the best I've felt in 4 month nearly! I knew I was poisoning myself with foods but thought I was eating healthy,plenty of fruit and veg etc,and now I've cut them out of my diet the effect its had is unreal.I'm eating gluten free cereal and toast still,but now I'm eating more meat such as fish,chicken etc and combining it with white rice. That's all I've tried yet,as I darent change things too much while its helping me,but its been such a relief to see an improvement. I dare say I was operating at 5 percent of the person I was whilst really ill now is say 70 ish percent. I've cried so much,and I'm stunned. I just hope this is a start for me and that I may just be able to keep this awful illness at bay through diet. I have noticed when I get stressed though I tend to start flaring,so am trying to reduce stress (im a born worrier and still frightened if im speaking too soon) but a week ago I had no hope and didn't feel I was strong enough to get through this,but now I just may have much more hope than I thought. I know,many FM sufferers on that forum have tried this diet without success and have no.idea if it can help anyone else,but it may be worth others taking a look. Just Google low oxelate diet if anyone is interested. I'm due for ultrasound this week on my hands,and MRI on back week after. My back however is virtually pain free now,for the first time in 4 months,so convinced nothing will be found now,meaning I'm.lilikely to be diagnosed with FM along.
Hope everyone is ok,and enjoy Sundays lunch.i might never have one again,but its a sacrifice ill gladly make if this keeps up Take care
Paul xxx
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Date: 30.07.2012
From: rhona
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Subject: Re: awaiting diagnosis
Hi Paul, Good to hear that you are feeling better. Sometimes diet can make a difference to certain illnesses, I have r/a and i have noticed if i have went all day without food then i do feel less pain, you have obviously been very dedicated at trying to eliminate foods that could aggravate your condition.
I also believe stress is a contributer to many conditions. Once you have had a diagnosis then you may be able to relax more and then feel better. good luck. x
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Date: 01.08.2012
From: paulg
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Subject: Re: awaiting diagnosis
hi rhona,yes,the diet seems to have a major effect,but my stress levels are still very high,and ive noticed my symptoms come back when im very anxious.
I just cant help feeling stressed though,this condition i have and the past 4 months is something i cant switch off from. i know my mental health is at its all time lowest still and i need to get this dealt with too. i was sat at the hospital awaiting my ultrasound on my hands and feet yesterday,and i got so anxious my hands started swelling and went bright red and pain began to appear. i know I have to come to terms with it all and make changes to my life if im to cope with it all,its doing me no favours becoming stressed.ive spoke to my gp and need to change my anxiety meds i think,and counselling/cbt.otherwise ill implode i think,i take after my mam you see a born worrier,wish i wasnt. but i have a lifeline in the form of diet,and never thought i would have any form of control whatsoever,so hard as it may be for me to see the positives given my nature i know i have to change,its the only way ill get through it all,i know it all too well. take care x
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Date: 01.08.2012
From: rhona
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Subject: Re: awaiting diagnosis
Hi Paul, It is very stressful having constant pain and it is an anxious time wondering how things are going to be. It will take time to come to terms with it but things will get better. I am also a born worrier and it really doesn't do our health any good. I know it is very difficult not to get stressed when you have a long term illness. I worry about everything, i worry about the future, i worry about side effects from my medication, in fact i worry about everything. Have you tried yoga? i found it very helpful but unfortunately it's too difficult for me to get off the floor now and a lot of the movements took place on the floor. My daughter is also a worrier and she uses relaxation tapes which she finds helpful. Try and stay positive Paul, medications are improving all the time and if you have a healthy diet and try to reduce your stress levels in whatever way you can then hopefully it wont be too long until you feel better. Take care xx
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Date: 03.08.2012
From: Yasmin
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Subject: Re: awaiting diagnosis
Hi Paul, God, you've really been through the mill last few months...Sorry, I've kinda been really unwell myself and kinda shut myelf away from everyone...still trying to find the strength and focus to rise above life at the moment, Marlene's 'ray of sunshine:)' has come under a very dark cloud and struggling to come back into light...thought I'd drop in and see how everyones doing...Yes, I can really understand and feel mental and emotional rollercoaster...Crying is one thing that usually helps me to relieve anxiety and stress levels and balances me out but since i've started to accept my life and its challenges it has become to much harder to even shed a couple of tears...I have to keep telling myself it is a process I go through once every 6 months or so and I always bounce back this is no different...and slowly but surely I'm getting there...When the body has too much to cope and deal with it will go into a phase of breaking down and the survival mode takes over were your body will take it own time to process through everything and return back to its original place once its ready...all I can do is wait...and allow my body to heal itself as much as possible...I think if we can all learn to deal with stress better and more positivley things can only improve but that is the main crunch, controlling stress can be a major issue...but tomorrow is another day as they say;)p... I'm really glad this new diet has helped you, I will look it up, maybe it can help me too...I am very careful with what I eat but like you said even eating what we think is healthy can be doing our bodies harm in rare cases...I know citrus fruits cause my pains to worsen so I avoid them as much as possible...It good to hear you've got someone to look in on you, physical and emotional support is very vital in order to get back to life as normal as possible...
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Date: 04.08.2012
From: marlene
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Subject: Re: awaiting diagnosis
Hi Yasmin, n ice to see you back. Hope you feel better soon. Take time for yourself, you can't help others if you are sick yourself.
It is hard when we have to look after elderly relatives when we are not so well ourselves. Take Care sending hugs xx
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Date: 05.08.2012
From: Yasmin
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Subject: Re: awaiting diagnosis
Hi Marlene:)...x It so good to hear from you, thank you for your warm words my friend...Yesss...I have overdone things alittle bit;)p....You know it amazes me how thing seems to filter through even when I think I've covered myself from all angles from any negative aspects of life getting through, it seem my fortress isn't a strong as I thought it was:)...but I suppose in order to keep my sensitivity and remaining human emotionally it is a vital that I allow certain amount of life to touch me deeply and personally...Keeping the balance is a major challenge sometimes...But I am feeling more myself today though still get a temprature during the day... Marlene, I was thinkng about you last night, about how you and your mum are coping...I would love to chat with you further if you're ok to exchange emails...Until we speak again...Please look after yourself...love and hugs Paul: I hope you are doing better...Your appt with the rheumy should be any day now if I'm right...hope everything goes well...by the way looked up the Oxelate diet...theres so much to understand, my mind was quite blurred and things didn't make too much sense, the only thing I learnt was that dairy and wheat and some nuts and seed products seem to aggravate most peoples stomachs and create a over build up of Oxelate...becoming freef rom these seems to help children with Autism too...My son 11, has Aspersgers and I have tried several diets before to help him as alterating constipation and loose stomach has been constant problem since he was a toddler...I have started on the diet the best I can by exchanging normal cows milk to Almond milk and I've exchanged wheatflour to Rye flour for the time being, I'm gonna try and bake rye bread hopefully it won't be too bad:)...I will also start to introduce alternatives to cheese and yogurts etc slowly...I am doing this with my son hopefully this way it will be easier for him to accept the change if we're both on it...I'm praying it will help me in the long run too...thank you for the introduction, Paul how have you impelmented the changes, are you still feeling things are progressing?
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Date: 05.08.2012
From: marlene
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Subject: Re: awaiting diagnosis
Hi Yasmin, yes my mum and I cope as I have full support from my husband.
She goes to a club run by our local council three days a week. She is pick up and dropped back home. She is given dinner. Of course there is a small fee.
Mum and Dad moved to Clacton 20 odd years ago, when We lost our Dad mum moved back to London with me.
She has contact with one of her eldest friends as she also goes to club. They have days out. She has her hair done there, Chiropodist goes there every six weeks, hearing aid people go there every three months. So this has lightened the load for me.
Next week-end she is off to Southend to spend some time with her sister-in-law (also widowed).
Yasmin if you need help with your elder family help is there contact local social services for advice or age concern (they gave me great support).
I hope this helps just ask me and I will give you advice if I can.
Take Care and I hope the family are all well.
Hugs for your Son xx
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Date: 21.08.2012
From: vlad
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Subject: Re: awaiting diagnosis
Have you tried Turmeric?
http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=150869219714&ssPageName=STRK:MESE:IT
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Date: 13.09.2012
From: George
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Subject: Re: awaiting diagnosis
Hi Paul, I've just gone through your whole history and I was wondering.. What was the result of the ultrasound? Did they find any signs of inflammation??
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