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Date: 01.10.2013
From: Linda Bradley

Subject: Useless doctors

Hi all, quick update.... back to work tomorrow after 2 weeks. Still no better (feet) Saw doc yesterday and he just upped my Naproxen! Suffering with headaches and acid and feel 'chesty'. He also gave me Lansoprazole for my stomach!! But that was it... Sick of feeling like this... Don't know where to turn... one minute you feel like you're getting somewhere then the next hit a brick wall. Think my only hope is to see 'occy' health tomorrow at work. Sorry folks but just had to get that off my chest. Hope everyone else is ok x
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Date: 01.10.2013
From: Emm

Subject: Re: Useless doctors

My feet are rubbish too. My ankle swollen and won't seem to get better, damaged now! Walking is hard.

I identify with all you are saying and agree no medication works very well.

See the OT at work and if it is so bad try to leave on ill health.
We all know what it is like to push ourselves beyond what we are now capable of. Daily life is hard enough without the pressure of still trying to do what we used to and are not capable of anymore.
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Date: 01.10.2013
From: Linda Bradley

Subject: Re: Useless doctors

Thanks Emm, Its rubbish isn't it! What gets me is too, my hands, elbows and knees get examined every time I go to Rhuemy clinic, but no-one looks at my feet!!

I will see what they say tomorrow. Its great to hear off other people in the same situation. Its a great help. Cheers x
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Date: 01.10.2013
From: bsk

Subject: Re: Useless doctors

ha! I had my ankles looked at yesterday Linda. They look at hands and knees etc because that is how joint inflammation is assessed, for some unknown reason.
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Date: 02.10.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi bsk, oh I see. that explains that, lol. Although no-one has looked at my ankles! Did you have your scan? hope it went ok. Had a chat with my boss today.. back to work interview. He asked if there was anthing they could do to help.. then suggested working mon, wed and fri! (I work wed, thur and fri at the moment, .. told him I didnt fancy that. Would like to do mornings, but thats not an option!! So god knows what will happen.
Take care x
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Date: 03.10.2013
From: bsk

Subject: Re: Useless doctors

Hi Linda, no scan until November :( It's all a bit rubbish really. They mostly don't look at my ankles and they are not really that swollen - Emm's sound worse, and yours too.
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Date: 03.10.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi bsk, my ankles are always swollen and have been for years! dont know if its fat.. or just me ha. Hot weather makes them really swell. Had my 2nd day at work today, oh I've really stiffened up now.
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Date: 04.10.2013
From: helen

Subject: Re: Useless doctors

Hello all. Wev had our little holiday to center parcs great for the active. It was lovely to get away from our live in grandaughter of 20mths. Trouble is iv suffered everyday night and during the night. My knees are so painful and swollen just gel to rub in feet don't get me started as I won't be able to stop. The amitripyline doesn't seem to work only take 10mg only been on them for a week tho. They certainly made the bowels work! Is this normal? I'm wondering whether I refer myself back to the foot Dr again he could never see or understand that there is anything wrong with them but I can how can I get him to listen or understand them and me. Very frustrating and as you all know we could do without it we need HELP
Iv just been diagnosed with fibromalarga so what with arthritis pain and tiredness and now this I'm struggling sorry for a long post with no help really. Helenxx
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Date: 05.10.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, I know what you mean, you just don't know where to turn next. I'm pinning my hope's on the health dept at work.. probably hit a wall again tho! I don't know about Amitripyline sorry. I had to come home early from work yesterday.. my left foot was agony. Plus I got a pain in my side, where my gall bladder used to be...god know why thats started aching! oh well its sometimes good to get it off your chest. if nothing else,, take care xx
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Date: 05.10.2013
From: bsk

Subject: Re: Useless doctors

Amitriptyline takes a while to work Helen. I went up to 20mg before they were effective for me though I don't take them any longer.
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Date: 05.10.2013
From: helen

Subject: Re: Useless doctors

Evening Linda. Thanks for reply it means so much to have someone feeling very much like me! Just means I'm not alone I do get fed up with moaning about whats in pain,new pain how my knees look. My feet are this weeks top topic the pain the size, the sausage shape toes and the burning feet in bed.
Iv done well today have been for coffee with mum and my girls helped with the weekly shop and even managed to put it away which hasn't happened in weeks so maybe getting over the worst AGIAN. I'm even talking about walking flo my collie tomrro iv not told her yet tho just in case iv done too much today which really isn't that much.

BSK..thanks for your reply. Iv tried these tablets before but always felt hungover. None of those side effects as yet but just the running to the loo or rather fast walking. Let's hope that settles and they start showing some signs of doing their job don't really want to up them.
Have a good Sunday to both of you.
Helen x
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Date: 06.10.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, thats good you managed to get out. Hope you get to take your collie out too. My feet burn, not only in bed.. seems most of the time. Been to tesco today, god it was busy, ankles aching now. I see people in lovely shoes, god I'd love to wear dresses with a pair of nice shoes... wear trousers all the time :-(
Enjoy rest of the day,
Linda x
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Date: 06.10.2013
From: rhona

Subject: Re: Useless doctors

Hi Linda, Thought I would pop on and add my wee bit. I would love to be able to wear nice shoes too, I have so many and can't wear any of them. Trainers and slippers is all I can wear and we are going away on Wednesday and I am worried because my feet and ankles are so sore, it's hard enough going from room to room in the house at the moment. Hoping to get a steroid jab tomorrow. Hope you are ok. x
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Date: 06.10.2013
From: helen

Subject: Re: Useless doctors

Hi Linda and all. I too would love to wear nice pretty shoes. I could never wear heals anyway but I do miss my flippy floppy shoes for summertime. I wear hotter shoes now lovely&soft and comfy but I'm finding out that any shoes are a no go area. Shoes are not a joy to wear. Feet are a pain day and night I just don't know why and nothing seems to show up. Could it be this Fibro thing or PA?? Anyway walked my flo in the woods small stream so she came home wet. First walk in a month with her for me yes I suffered and still suffering knees painful and the old back problem doesn't help. Iv slept since but feel good for moving myself I couldv quite easily said no. I'm phoning my OT and foot man tomrro see if they can help.
Rhona I didn't realise you can have jabs in feet/ankles iv also heard that knees can have jabs too could you tell me how I go about asking or do I wait for drs/nurses to offer. So much to learn or need to know.
Thanks for listening nobody seems to understand or get me!
Helen x
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Date: 07.10.2013
From: rhona

Subject: Re: Useless doctors

Hi Helen, I've had many jabs in my knee but never had any in my ankles. I usually just phone the clinic and ask if they will do it and sometimes when I am at the clinic they have suggested it. I am hoping to get one tomorrow or Tuesday and it will probably be a systemic one, that's when they usually jab your bottom and it seems to help all over. If a joint is really sore then it is best getting the injection into the joint. Good to hear you managed to walk your dog today, I miss not having our dog to walk now she was great company but she was put to sleep 4 months ago.

Take care x
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Date: 07.10.2013
From: helen

Subject: Re: Useless doctors

Hi Rhona. I lost my 15yr old molly a jack Russell last august. I do miss her I love a lap dog flo is a medium sized collie she's very good and clever but shouldv and wouldv made a good sheep dog a working dog. They are good company and don't answer back.
I'm gonna ask about the steroid injection had one in bum last year im worried about having more steroids cos of weight gain and a fat face. Put on so much weight in the last year hard to take it off again.
Hope you get yours this week.
Helen. X
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Date: 07.10.2013
From: Linda Bradley

Subject: Re: Useless doctors

Morning, Rhona, know what you mean, I had a comfortable pair of sandals from pavers, but now its winter, its back to trainers. Hope your jab helps and enjoy your trip.

Helen, I've been getting my shoes from Pavers, which is like Hotter. Someone at work suggested crocs, for work, (work in a hospital enviroment) but I don't know. I buy expensive shoes them never wear them!! In need of some decent slippers at the moment :-( Glad you got out for a walk.
I have had jabs in my bum...don't seem to do any good.
Take care everyone
Linda x
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Date: 07.10.2013
From: rhona

Subject: Re: Useless doctors

Hi Helen, Getting an injection into a joint won't cause weight gain although having too many systemic ones could eventually cause a moon face.

Dogs are great company, Millie was a cross/collie and such a gentle natured dog and I still miss her. x
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Date: 08.10.2013
From: helen

Subject: Re: Useless doctors

Hello all. Thought I would just say a good word about my rhumey clinic. I was on the point of contacting them for help when the clinic nurse got in first. Wanted to know if I attended the ultra sound scan as they have no report from them. Maybe they should be contacting them not me anyway whilst on the phone I asked if I was able to have a steroid injection few wks ago I refused steroid tablets but I need help now and injection seemed a better plan for me guess what going tomorrow yeay.....
Today the clinic nurse phoned asked if my pain is PA or newly diagnosed FIBRO again I feel that I'm having to explain myself I find this all very tiring and frustrating yes i know its their job but.. So bp has been raised again!
Rhona did you get your jab today?
Linda how are you feeling?
Helen x
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Date: 08.10.2013
From: rhona

Subject: Re: Useless doctors

Hi Helen, I got it yesterday and it seems to be helping already, I am happy it seems to be working as I am off to see my daughter tomorrow that lives in Spain. My face looked very flushed today but that seems to be a normal side effect to the jab and it's going down a bit now. Pleased to hear your getting one tomorrow, I hope you feel a lot better for it. Best go and finish my packing off. Good luck x
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Date: 09.10.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, alas I'm no better. Been at work today, and by the time 3.30 came I could of crawled into bed.. got home about 4.15, very tearful and in pain with my feet. heels were burning, so fed up. Glad you are getting a jab, hope it works for you, I am now waiting gor a physio appt! everything takes so long does'nt it
Linda x
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Date: 09.10.2013
From: helen

Subject: Re: Useless doctors

Hello Linda. Sorry to hear your still no good. I'm still joining you in this club. Dad took me for my steroid jab and yet again I'm being let down as at the booking in desk i said my name guess what I'm not on their list so again I explain everything what has been talked about. The receptionist phoned down to the nurses office and yes I'm having it today but they didn't let anybody know so I had to wait for a clinic nurse to come to this area of the hospital. Lovely new nurse came then another run down about what's going on with me she had no notes just a piece of paper with my name on. Anyway all done I'm really hoping I get some relief as like you Linda feet ankles so painful and burning. My knees the same I'm so tired but when in bed I can't seem to sleep or if I do I don't feel I have. Iv decided I'm staying in thurs and Fri and resting.
Its harder for you Linda as you work any chance of dropping some hrs until your feeling a little better or get an appt with occ health they might be able to help you.
Hope you have a better day tomorrow.
Held x
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Date: 10.10.2013
From: Colin W

Subject: Re: Useless doctors

Helen , what joint did you have injected , was it your ankles or have you had they done & has it improved , I was in hospital & had both knees & ankles done & after 24 hours of total bed rest my knees was great but my ankles were still hot

the Rheumatoligist will only inject into the main ankle joint & not into the joints around the heel which they can do in a hospital operation theater & because of this I endded up having Triple arthrodesis ( fusing of ankles ) on both ankles
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Date: 10.10.2013
From: helen

Subject: Re: Useless doctors

Hello Colin. I had a steroid injection in the bum! If it gives me a little pain relief its good as lately I really don't know what to do with myself. They say I'm a complex case! as iv chronic back pain which iv had for at least 10yrs,OA in both knees,PA,and newly diagnosed with FIBRO. If the injection doesn't help they will refer me to orthopedic clinic maybe they can do injections on knees and feet. Clinic nurse did say if the methothexate tablets give some relief but not what I need I could try the injection route have you any idea or know if that's a better route to take.
Thanks helen
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Date: 10.10.2013
From: Emm

Subject: Re: Useless doctors

Colin, does having. Your ankles fused mean you cannot bend the feet at all.
Curious as I may end up down that route with my right one.
But ...would I be able to drive still?
Grateful for any advice. Thanks
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Date: 10.10.2013
From: Colin W

Subject: Re: Useless doctors

Emm , with a Triple arthrodesis you lose the sideway movement & still have some up & down movement so driving is no problem

my main ankle joints will need doing at some point but they been saying that for the last 12 years so still hopeful they will have a better option at some point

you could try a hydro pool & see if you can build the joint up , may make it worse to start off with more movement in the joints
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Date: 10.10.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, Its a farce is'nt it. You have as much luck as me. I received a letter today from my rhuemy doc (copy sent to Gp) saying she had seen me in clinic... 16th July ! letter was written on the 12 Sept... saying I had sero negative infalmmatory arthritis. and what drugs were prescribed. Also if I am unable to tolerate mtx I could ring secretary and arrange a referral to convert to metaject. And to contact them if I had increasing problems .. Which if I do I probably won't get one till Nov.... laughable is'nt it, At the time (July) I can't remember her saying anything like that !! Had a better day thanks. Hope your jab works.
Linda x
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Date: 11.10.2013
From: helen

Subject: Re: Useless doctors

Evening Linda. Hope UV had a better day today at work with all your pain. Its all very tiring mind and body. Iv stayed in as planned today. My two girls Emily and Chloe went out for the day with the little monkey Ella with them my 2yr grandaughter she is lovely but as living here with us I do miss having quiet times. Anyway iv slept the day away don't know whether its the new tablet making me sleep amitripyline have you had it. Its supposed to help relax you there for help you sleep. Iv tried it before but I was working and couldnt wake up and then do my day job unless I went in later and finished later.
Hope you have a good wkend
Helen x
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Date: 13.10.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, not been on here for a couple of days. I had a better day thanks as I was able to sit in between patients. I've not had Amitriptaline, but had heard it makes you drowsy. I'm just hoping that my appt for occy health and phyisio is soon.
Hope you're feeling better.
Linda x
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Date: 13.10.2013
From: helen

Subject: Re: Useless doctors

Hello Linda. Hope the wkend has been good for you. I went Exeter to buy hotter shoes. They are lovey and comfy but expensive. Worn them today yes I'm pleased but to be honest don't think any shoes boots slippers are gonna help these painful feet heals and ankles. I'm rubbish today with achey but heavy limbs even hanging washing out was an ache&pain. Did you ask for an appt for occy health hope you don't wait tooooo long. Early night for me I'm tired and fidgety.
Take care. Helen x
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Date: 14.10.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, I've not had a bad weekend thanks. We have'nt got a hotter shop up here. But may have a look online. My boss was supposed to refer me to occy health, then I'll get an appt. My right foot has started now as well as my ankles. It felt like I was being stabbed in them last night.... at the front.. if you know what I mean. God what are we like!
Hope you have a better week
Linda x
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Date: 14.10.2013
From: helen

Subject: Re: Useless doctors

Hi Linda. Had awful night last night bed for half ten back downstairs just after twelve. More painkillers cuppa tea hot water bottle and a tissue for my tears! A long night didn't go back to bed Brian my husband went off to work at six brought me in my box of meds and off he went. Strange feeling it wasn't a pain it was an ache everywhere like the feeling you get with restless legs needing to keep stretching but the ache got worse. I think or I hope the steroid jab has helped as knees and feet are much easier less burning. Linda have you thought about having steroid jab or the tablet form of steroid could give you some relief for a while its worth an ask. No plans or appts this week just an odd coffee with my cousin who is lovely but doesn't understand how painful and low you can be with what they think is just arthritis!!
Have a good night.
Helen x
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Date: 15.10.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, oh god you are having a bad time. :-(
I did have have a jab last July, can't say I felt the benefit! I was on the steroid pills before I started mtx, then got weened off em. Felt better while on them.! Some of my friends say they have arthritis and don't understand how crap we feel.. dead flippent. Bad day today.. took my mtx last night so feel awful today.
Hope you're ok
Linda x
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Date: 16.10.2013
From: helen

Subject: Re: Useless doctors

Hello Linda. Feeling good with the feet and knees long day on them yesterday and today it makes me happier without this continuous pain. Like you iv taken the tablet form with the count down over the weeks and also the injection form. Tablets did a good job but I put on so much weight I hated that side with them.Injection doesn't seem to last very long but just enough to give you some relief and smile for a while! Give it a thought....
Hope you have a better day today.
Its good talking to you Linda I feel we can moan to each other and understand why we are moaning!
Take care
Helen. X
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Date: 16.10.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, I know, I enjoy speaking to you too. You know exactly what I'm goin thru. Rang my rhuemy nurse yesterday, had no answer yet! Felt headachy and nauseous today. everyone I work with seems to be coming down with cold... so don't know if its that or my mtx.. Glad you're feeling better. Hope it lasts for you.
Take care
Linda x
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Date: 17.10.2013
From: helen

Subject: Re: Useless doctors

Hello Linda. How are you feeling? Did you come down with any germs from work mates or thinking it was more like the mtx? Iv taken my 8 tonight always feel strange next day a bit yucky. I also take folic acid for 6 days do you? Hope youv heard from the rheumy nurses. It drives me crazy waiting for replies doesn't help us being frustrated and in pain. I know we arnt the only ones in need of help but just a reply to say they will be calling you the next day at a certain time gives us a little hope. I phoned my gp today for a phone consoltation I'm still waiting! I know its not an emergency but felt it couldv
been sorted over the phone and before the weekend. Will try again tomorrow. Another good day with feet and knees no burning feet in bed hope it lasts.
Off to bed now
Talk tomorrow
Helen x
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Date: 19.10.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, feel better today thanks. I think it must of been my mtx. I only take folic once, I should of asked my rhuemy nurse when she got in touch with me on thur.. but forgot. Thats good you're feet and knees are better. Hope it lasts for you. Its so annoying when people don't answer your calls. It would be different if it were them.
My boss has finally referred me to occy health, I have also applied for another job, in the same dept, but less hours and not as much standing on my feet..so fingers crossed!
Good luck with speaking to your GP,
Speak to you soon
Linda x
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Date: 21.10.2013
From: helen

Subject: Re: Useless doctors

Hello Linda. Hope you had a good and pain free weekend. Yesterday was the weekly shop two weeks ago I couldn't walk around it cos of the pain but did the whole shop and the only pain was my back which I'm used to. Babysitting last night but she's in bed before they go out so its just a tuck in again when I go to bed till this morning such a good girl. Pain with shoulders,neck&hands today big clunks when moving shoulders and noise from my neck when turning seems like a grating/grinding sound. Very strange. Slept afternoon away woke up to a roast I had prepared it all earlier but Brian did the rest he's so good.
Off to bed now.
Take care talk tomorrow
Helen. X
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Date: 21.10.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen. Not a bad weekend thanks, apart from the damn rain.. so dark and miserable too. Thats good you did shopping, great improvement eh! I had a bad shoulder yesterday, nagging ache, but think my dog had something to do with it.. lol. He likes to lie on me when I'm lying on settee. How lovely to wake up to a roast.. well done Brian. Just been to have my bloods done, also gave me my flu jab.. hope I don't suffer later.
Take care
Linda x
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Date: 22.10.2013
From: helen

Subject: Re: Useless doctors

Hello Linda. A busy day yesterday with my girls. Trouble is I suffer later. Was in bed by 8 but didn't sleep just nice and comfortable than a sofa. Today took my cousin to a garden centre she has MS walks with a trolley me with a stick couldn't help each other if we had to. Had coffee and a rest bumped into our other cousin whilst catching up with all family gossip she was saying about her pain and tiredness comes to she suffers with fibromylargia the same as me. It was nice to have someone who understands how I feel. It was good to talk. Knees and feet are beginning to play up again it will be two wks Thurs so not brilliant but I did need that relief.
Hope you get some appt letters thru your door this WK even a letter gives a little relief that somebody has listened to you.
Take care
Helen. X
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Date: 23.10.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, It does you good to have a good catch up with friends/family does'nt it. Glad you had a god day. Sorry about your knees and feet, did'nt last long did it? I got an appt thru today for occy health.. next wed. I've felt like I was starting with a cold last few days. Had early night, ached all over. Think it was affects of the flu jab.
Speak again soon
Linda x
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Date: 25.10.2013
From: helen

Subject: Re: Useless doctors

Hello Linda. How are you feeling now? Couple busy days for me just seemed a run around week. Today met my friend for coffee sat talking for couple hours so bit stiff when getting up. My whole body feels pain today my shoulders felt very heavy and ached never had this before iv had a lot of grinding and clunking in both shoulders lately. Took my weekly 8 tablets last night so a Sicky day and a banging headache. Early to bed again for me I don't sleep but it comfy and I'm resting. Have you any plans for the weekend? Mines just food shop the house needs a tidy as Ella has her fingers in everything bless her!
Take care
Helen. X
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Date: 26.10.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, feel better thanks, finally got my occy health appt, its on wed. Pinning my hopes on her, but I've done that in the past and been let down! Oh I hate that feeling after the mtx.. thats all you want to do is be in bed..
No plans really, except shopping, washing etc. settle down later to watch Stricly come Dancing..lol.
Hope you have a good weekend and not feel too bad,
Take care
Linda x
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Date: 31.10.2013
From: helen

Subject: Re: Useless doctors

Hello Linda. Sorry not been in touch has been a rough week with my youngest daughter. Optician sent her for an extra test at the hospital as seen pressure behind the eye pressing on the nerve. A whole day with scans photos and two consultants ended with its a big chance a tumour on the brain causing the pressure. Waiting for CT appt for Monday drs having a meeting then results the following Monday. She's 20 but still my baby!! Upset day yesterday little easier today. I think iv got this throat&headache virus going around. The steroid injection had did its job but back to square one. I'm phoning my consultants secretary tomrro this mtx isn't helping me I can't go on living like this or rather just
existing its so tiring. Sleeping is rubbish spending most of the night on the sofa.
Anyway enough of my moans how did you get on at OC health? How are you feeling with the pain and side effects with mtx.
Only 2 knocks at the front door with trick or treat tonight but I didn't get up I couldn't.
Keep in touch
Helen x
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Date: 31.10.2013
From: bsk

Subject: Re: Useless doctors

Helen, sorry to hear about your daughter. You must be very worried and I'm thinking of you. Don't forget that stress can make arthritis worse, so just be aware of that. Fingers crossed everything works out ok.
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Date: 31.10.2013
From: helen

Subject: Re: Useless doctors

Thank you. Its just the not knowing and you want everything done asap but it doesn't work like that. Week Monday can't come.soon enough. She has a daughter who will be 2 middle of November. Poor thing as her mummy keeps crying I'm being strong but have my weakness when nobody's around.
Let's hope I get some sleep&free from pain.
Thanks again
Helen. X
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Date: 31.10.2013
From: bsk

Subject: Re: Useless doctors

I'm sure you do but you don't have to be strong on here, I hope you know that. We are all around to support you.
xx
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Date: 01.11.2013
From: helen

Subject: Re: Useless doctors

Afternoon.
Had a good nights sleep it was really needed. My back is playing me up more so than normal. Joints are stiff and painful shoulders clunking and neck grinding I think that's how to explain it. Phoned the registra who I saw 6wks ago as last time she spoke about trying mtx injection as said its works better than the tablets. I have also been diagnosed with fibromylargia but find its muscle ache rather than pain apart from pressure point areas.
As you say stress doesn't help iv had a really busy week but today I'm home but finding it hard not to go out think I have ants in my pants!!
Hope you got on OK at the hospital today.
Thanks. X
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Date: 01.11.2013
From: bsk

Subject: Re: Useless doctors

It was fine thanks. Routine and I suppose I'll hear in a couple of weeks. I'm am confident they won't find anything.
Take care of yourself. x
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Date: 02.11.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, sorry I've not been on here for a few days. I've had an awful head, felt nauseous all week too. So sorry to hear of your daughter, very scary for you all. Really hope she's ok.
My occy health apt went ok, but it was with a nurse, I thought it was gonna be a physio. So she never examined my feet! but she is gonna write to my boss and advise them I'd be better doing mornings like I used to. My shoulder's been bad this week too, pain going down my arm. I see my consultant this month, and I think she'll say about putting me on the injection. The thouhgt of the pills make me feel sick. So sick of feeling sick..lol
We only had 2 lots of trick or treaters.. so not too bad.
Thinking of you on monday
Linda x
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Date: 02.11.2013
From: helen

Subject: Re: Useless doctors

Hello Linda.sorry you have had a bad week. Iv had headaches everyday and have ended up with a sore throat so think its a viral thing going around. Let's hope your boss can let you do the morning shift at least then you can go home and rest it will make a big difference on how you feel. Think we seem to be in the same boat with this mtx treatment but reading thru old posts people have either changed or took an extra drug with it so maybe its the norm that we feel this way.
Having a lazy day tomorrow at home hoping that the washing will stay on the line as today its been so windy the blankets had come off and ended up in next doors garden.
Speak in the week take care
Helen. X
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Date: 03.11.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, I've done my washing today..(sun). it was such a dreadful day yesterday. We seemed to have everything.. gales, rain, thunder then sun! Yes, it seems to be the norm looking thru old posts as you say. Just takes so long. I always seem to be ill.. so fed up. I have a week off work now which is nice, hoping I can get some jobs done. Anyway hope you are feeling better. Speak soon.
Linda x
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Date: 03.11.2013
From: Emm

Subject: Re: Useless doctors

Hi Helen, I hope you don't mind me joining in but I read your previous post which explained about your daughter.

My nieces son aged 13 last year was diagnosed with a brain tumor, he was whisked into Newcastle hospital and they removed it. He is doing OK now and is back at school but has to have an op on dec 3rd to correct his vision, which was fine before his op. His balance was affected due to an eye problem post op. He has glasses with special prism on lens at the moment. I do hope this op works.
His first symptoms were feeling sick, not able to stand the sunlight and being very tired.
His mum took him to the doctors thinking it was a stomach problem. What a shock for the whole family to finally hear the diagnosis.
He is monitored now for 10 years with scans and such to make sure it does not regrow.
Life is tough at times isn't it.
I hope you do not mind me sharing this with you.
I had a scare with my daughter too, who had an ovary and fallopian tube removed and gosh the stress until we heard that it was benign.
It does make our arthritis worse, because it is all you can think and worry about until you get some good news. As you say no matter how old they get they are still our babies and we love them so much!
I am routing for both of you at this difficult time.
Hugs for you.
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Date: 03.11.2013
From: helen

Subject: Re: Useless doctors

Thanks Emm its good to hear from you. Chloe hasn't had any signs of feeling ill it was found from a routine eye test. She has been feeling tired but who wouldn't with a toddler up and at 6am most mornings and also underactive thyroid problem. Wotever they find on the ct scan has to be dealt with due to pressure on the nerves. My husband and I have had some late night talks and feeling a little less shocked now. Im 47 and my mum still calls me her baby and when we cross the road she puts her hand out for mine!! Awful weather here today on and off with heavy rain now its rain and windy curtains closed by 4.30. Iv been up throughout the night with pain but the worst was my back pain I even took oramorph and diaxepan but still no help. Iv slept the afternoon away. Early to bed for me as chloes ct scan is 8.50am early for me but will get up 6ish to get myself going. Thanks for your kind words
Helen. X
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Date: 03.11.2013
From: Emm

Subject: Re: Useless doctors

Helen, good luck tomorrow.
I told you our story just to stress that sometimes life throws these things at us out of the blue and they really can happen to anyone.
I also get up 2 hours before, just to get moving when I have to be out early. Its harder too in the cold weather.
My pains stopped me getting out and about today, I just gave in to them. We have had quite a nice day sunny but cold and windy.
You all seem a lovely caring family and you will get through whatever , not easy but great you have each other. X
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Date: 03.11.2013
From: helen

Subject: Re: Useless doctors

Hello Linda. Hope you have a good week away from work. Trouble is you have to go back!! Just taken the last lot of pain killers and that's my lot for today the lights going off and hopefully sleep tonight.
Spk to you another day night night
Helen x
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Date: 07.11.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, the weeks not been too bad so far, although I did'nt get the job I went for..(don't know if I told you) so was upset about that. It seems that everywhere I turn I come up against a brick wall. Have to have a chat with my boss next week, he should have the letter from occy health by now. Feeling a bit low. Did'nt get much sleep.
How did your daughter get on? Hope she's ok.
Linda x
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Date: 07.11.2013
From: helen

Subject: Re: Useless doctors

Hello Linda. Sorry you didn't get the job. Let's hope its nothing to do with health and sickness which really isn't your fault. Everything is slow winded in doing anything. I have problems with this and get very frustrated by it all. I phoned the secretary of my consultants registra last Friday still waiting for appt or a phonecall. Shoulders are now playing up awful pain and making noises some days I feel my shoulders are dragging down to my knees. How are your wrists and hands iv lost a lot of strength /grip with mine a nurse at my gp said her sister is struggling with hers and she has the same arthritis and meds as us. Sometimes I feel is it worth taking it as side effects make me feel rubbish. Sorry bout the moan feeling down with it all.
My daughter Chloe has had her ct scan monday so now a wait till Tuesday for all results from eye clinic and neurologist. Fingers crossed something can be sorted to relieve the pressure from the eye nerves.
Helen xx
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Date: 07.11.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, I've got them crossed for you and your daughter. (fingers)
My wrists are very achey, and I have trouble doin fiddly things. So fustrating. I like you wonder if its all worth it! My shoulder is slightly better, but then I'm not at work..
Think I'll ring tomorrow to see when my appt is.
Linda xx
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Date: 12.11.2013
From: helen

Subject: Re: Useless doctors

Hello Linda. How are you this week. Did you have a good weeK off work awful going back after a rest. Its nice to have company and chats with work colleague tho.. Is it this week you have a clinic appt. Good news for my daughters results its a cluster of nerves that are small at the moment but will grow but very slowly which then can be treated her eyesight will tell her when its grown as she will have limited vision on the outside edge of the eye. Needs to carry drs report with her incase of emergancy. Iv had phonecalls from rheumy team iv stopped mtx they are sending me info on two other drugs. Iv read online about them don't feel very excited about them. I'm suffering with reflux at the mo and don't want their side effects making it worse. So confused with them all.
Having a day of rest tomorrow its really needed. Iv been in bed since 7 I find it comfortable for my achey painful body.
Take care
Helen .
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Date: 14.11.2013
From: linda Bradley

Subject: Re: Useless doctors

Hi Helen, sorry its been a while.. internet trouble!
So glad for your daughter, least they can do something.
I've not had a bad week ta. Nice to be off, but now back to the mad house lol. Not had my clinic appt yet, keep trying to ring, but no one seems to be there!.. I have reflux.. had it years. on Lansoprazole for it. So have to watch what I take, have to watch what I eat too.. a right pain.
Speak again soon
Linda x
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Date: 19.11.2013
From: helen

Subject: Re: Useless doctors

Hello Linda. Just been catching up on all the chats. Sorry your STILL having a really rough time. Iv been rubbish for weeks couldn't get through on the phone yet again. Anyway phoned the secretary she put me through just like that appt made for two wks time. Think the plan is contact the secretary explain ask for SOS appt they should see you.
I'm going for my new treatment appt on Friday so at the moment on nothing. Even on mtx I was told my CRP ?? has gone up so maybe that's why I feel the way I do rubbish.
Best of luck with the phone call it really is a must.
Helen. X
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Date: 21.11.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, I rang the secretary who put me onto the appt people, they realised I should of had one by now but the earliest is new years eve!! she also said to keep ringing, they may be a cancelation. So gonna do that. Also another nurse I know works with my consultant and said she'll have a word with her and maybe she'll see me on the ward next wed. My esr is high again..45.. thats high.. for me! not sure about the crp.
Hope your appt goes ok 2morro
Linda x
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Date: 21.11.2013
From: helen

Subject: Re: Useless doctors

Hello Linda. I'm so sorry that they can't get you in earlier. I do understand we arent the only ones in this situation but surely they could squeeze you in your all working in the same nhs hospital. Makes me so angry. I had a useless drs appt yesterday I want to come of a painkiller go on something as good with less side effects. He didn't want to change any meds as didn't know me as he's new to our practice I should speak to another Dr. I would if I could get in to see them. He is sending me to the NHS keep fit program as he said I'm overweight yes I new that that's why I want to remove the pregabalin painkiller as iv put on soooo much weight in the last 18mths.
Linda I really hope your friend can fix you an earlier appt you need to feel a little better in time for Christmas.
Helen. X
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Date: 23.11.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, sorry you had a wasted Dr's appt. Its ok for them, they aren't in our situation. I've put loads of weight on, keep saying I'm gonna do something about it, but after work, housework and shopping I feel so tired and my feet hurt/burn and now my damn hip has started hurting!!
Hope you get some benefit from the keep fit programme, but I know its difficult. Have a good weekend
Linda xx
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Date: 05.12.2013
From: helen

Subject: Re: Useless doctors

Hello Linda. How's things with you. Wev both been quiet lately. Have you managed to get any earlier appts at your hospital? How's your job have you had any luck with going to a different department. I had OT today waited since September but my usual OT has left through ill health so no fault of the dept. Iv been given two thumb wrist supports elbow support going back in 3wks to be measured up for palm splints to wear during the night but that's depending how my hands are through taking steroids tablets. I have noticed my hands have lost a lot of strength which did show up by the tests done today. But again once steroids kick in and the start of the new treatment after Christmas she's hoping things should be a little easier.
Anyway hope your nearly ready for Christmas. Iv got cards and wrapping to do. My girls said they would help with wrapping rather they did the cards. Keep saying I'm cutting down on sending cards but finding it hard to take them off my list. Hope you have a good wkend.
Take care. Helen. X
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Date: 06.12.2013
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, glad you are getting sorted and hope life gets a bit easier for you. For me, well... I had a funny doo at work and my friend who was gonna see my Dr... do you remember? she was there and took me to have my bloods and blood pressure done. They were a bit low. To cut a long story short, after a lot of phone calls etc. My Dr decided to put me on the injection. But the girl who is qualified to show me how to do it is off sick, so now I have to take time off work on the 18th to go to another hospital in the trust which is 40 miles away! I'm off sick today as I can hardly walk with my hip, even stood washing up hurts. God what are we like! Haven't done a lot of xmas shopping..done some online lol. I too have my cards to write.. no-one to help so will do it in stages. Hope the weather's been ok with you.. its been pretty rough here.
Have a good weekend
Linda x
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Date: 10.12.2013
From: helen

Subject: Re: Useless doctors

Hello Linda. Very fed up last WK registra phones said I could have steroid count down tablet as having flare crp up not having treatment till after Christmas really struggling mentally and physically. Script was in the post that night that was last Tuesday I'm still waiting. I haven't got any energy left or can't be bothered in chasing the clinic at the moment. They don't seem to be chasing me. My family have said to complain to pals. Don't not what to do. Feel iv lost any fight. Never used to be like it. Sorry Linda or anyone else reading post just had to unload.
Linda how's things with you and work have you sorted out about the mtx injection yet. Be good for you if it works with less side effects which will defferently make u feel better.
Thanks for letting me rant.
Helen x
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Date: 10.12.2013
From: marlene

Subject: Re: Useless doctors

Hi Helen, sorry you feel so fed up but you must chase up that prescription otherwise you will be a whole lot worse. Have you spoken to your GP they may be able to help you.
Don't ever feel you need to apologise we all get down in the dumps and this is the place to come for support.
You haven't lost the fight at all you are probably feeling a little depressed it goes hand in hand with this horrible disease. Pain lack of sleep and having to battle to get treatment is it any wonder you feel so rotten.
Chase that prescription and keep your chin up. Hugs on its way to you!!!!! By the way a word with PALS about your prescription could be useful. I complained to them when I was expected to wait 10months for an appointment and they chased it up and Hey Ho a letter arrived with an appointment for two weeks time. Your family advice is good.
Take care X
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Date: 10.12.2013
From: helen

Subject: Re: Useless doctors

Thank you Marlene. Thank you. You are right I must chase it up. Im now sat in tears think you hit the button to the flood gates maybe now I will fight back. Iv got bloods and bp on Thursday will SPK to my nurse at the drs she's brilliant I'm sure she will SPK to my Dr there and then. She too has ra and has had problems with the local rheumy clinic at the hospital. Everything is much worse when ur unwell tired with a little depression. Sad time of year missing loved ones at Christmas time. I'm feeling ur hugs bless you. I'm going to look online at the PALS info and what I need to do.
Xx
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Date: 10.12.2013
From: marlene

Subject: Re: Useless doctors

Glad to have been some help.
Sleep tight and remember we are all here for you xx
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Date: 10.12.2013
From: Linda Bradley

Subject: Re: Useless doctors

Oh Helen, sending hugs too. What is it with rhuemy depts?. Pals will help as Marlene says.. they helped me early this year when my appt kept getting cancelled. A good moan and cry always helps too. As for me, back in at work 2morro after having fri off. Get my injection next wed. Take care and fingers crossed we all get sorted soon.
Linda. Xx
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Date: 11.12.2013
From: helen

Subject: Re: Useless doctors

Hello all have been to sleep as so tired no awake ands its 2am the rest of the house is sleeping. In awful pain upset and also think its a fibro thing tonight. Upset tum as got myself in a state so have taken more pain meds and diaxepam to relax the muscle pain and to calm me. Its worked. So yes I will be phoning pals tomrro can't carry on like this. Thanks again.
Xx
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Date: 16.12.2013
From: helen

Subject: Re: Useless doctors

Hello Linda and Marlene. Such a horrid week and weekend. Managed to see my own Dr today explained all that's happened or rather not with the script of steroids. Anyway another tablet to go with my other bp tablets to reduce bp to start new treatment in Jan. Shes also said kidneys not working as they should so more blood tests this WK. I think its to do with the high bp. Anyway she phoned the rheumy clinic told her dose strength and she's wrote me a script there and then. She's writing a letter of complaint to the clinic and mine to pals is nearly finished. Onwards and upwards. Thanks for the support. Love to all. Helen. X
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Date: 16.12.2013
From: bsk

Subject: Re: Useless doctors

Glad things are moving on Helen. I've got my own gripe about my rheumy clinic (on the 'new thread for Marlene etc.) so I know where you are coming from. I've got to sort things out after the New Year myself.
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Date: 17.12.2013
From: Linda Bradley

Subject: Re: Useless doctors

Oh Helen, sorry you've been having it so rough. But glad your doc is complaining, its not good enough. Why do we have to fight for stuff, its bad enough we have the desease! I finally got a letter from occy health... it got lost in the eether. They recommend me do mornings and not more than 5hours. It will not go down well at work !
Go for my appt tomorrow, for the injection. So fingers crossed.
Will be in touch
Linda x
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Date: 18.12.2013
From: Linda Bradley

Subject: Re: Useless doctors

Well am on Metaject now.. anyone heard of it or on it? Hopefully I won't get nausea and headaches with it.
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Date: 18.12.2013
From: helen

Subject: Re: Useless doctors

So plzed for you linda. Let's hope this is gonna help you. Long time coming. Let's hope in the new year we will be jumping around. Not. But a little happier because we are in less pain.

Bsk I understand how you feel. When you feel unwell pain tiredness the last thing you feel or should be doing is chasing the blimming rheumy clinic. They need to put themselves in our shoes. There's two nurses I find rather rude when I use the support line I always feel they come across in a hurry as they are so quick when asking me all these questions I then get forgetful or tongue tied because of their manner. They never say hello or who I'm speaking too but I can put the voice to their name. Maybe been there too long as the two new nurses are completely different. Also because I feel rubbish I don't want to be spoken like it. Just rude. Anyway that's my little moan.ha ha. Iv started my steroids two mths supply. So Iv got burning Rosie cheeks soon to be round burning Rosie checks. Oh dear iv gotta join a gym run by the NHS its a one 2 one so new yr new me. That's another ha ha ha or rather ho ho ho
Xx
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Date: 30.12.2013
From: helen

Subject: Re: Useless doctors

Hello Linda. Hope you had a good Christmas. Ours was good hubby had bronchitis so antibiotics was given but so strong upset his gut. Loads of mince pies cream nuts etc to eat as he's not eaten a thing. On the mend now.
Hope your getting on better with the injections with less or no side effects
Hope the new year is good to us all.
Happy new year.
Helen. X
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Date: 02.01.2014
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, happy new year to you too. Sorry to hear about hubby, glad he's on the mend. Our was nice, quiet but was nice to be off work, just gone back today. So far on metaject I'm feeling better, well at least no nausea. Still get the headaches and feel tired.
Hope you are feeling ok, lets hope 2014 is a good year
All the best
Linda x
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Date: 07.01.2014
From: helen

Subject: Re: Useless doctors

Hello Linda. Gp rang today re.bp/blood test. I need to buy myself a bp monitor save the time of the GPS they have been asked to manage my bp as had to go on another tablet to reduce it to start new treatment for pa. Later today my rhuemy nurse rang to see how I was getting on with the steroids and bp explained it all and how I'm feeling said she would SPK to registra and ring me back. Within that hr I was being told I can start the new treatment beginning with L so script is in the post and needing to go and have bp checked every two wks when bloods taken. What a good day. Feel I'm on a high. Worried bout side effects as not good taking meds but happy somebody has helped me and i didn't need to do the chasing.
How are you Linda with the injection are you managing OK doing it yourself.
Hello. Xx
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Date: 08.01.2014
From: Linda Bradley

Subject: Re: Useless doctors

Hi Helen, I'm so glad you are finally been listened to. It must be a weight off. I know what you mean about taking meds, everything seems to upset my tummy. Yes, I'm doing ok with the injection thanks. Only done it 4 times, but getting the hang of it, and so far its not making me feel sick. I saw my rhuemy nurse last week in passing, she said she'd been trying to get hold of me, left msgs at work, which I didnt get!! Anyway brought her up to speed, thank god I work in the hospital and know ppl who can help. Even then it gets fustrating.
Speak soon
Linda xx
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