RA so they say.

[Hands_1]

I have been reading all your posts I feel quite upset that you all seem to know what you have. I know I have RA and been on all sorts of medicine. I had been taking meth? and going every month to the hospital for about 2 years having taken loads of drugs,but they seem to have side effects,so I stopped them. Anyway I do not go to see anyone now with not taking the meds. I was trying to do knitting and croqueting which took ages as hands hurt. They did seem to get a little better,but have not been doing any work as my thumb has started to jump at the first knuckle joint. (my arms have moved, up to the elbow over the last couple of years like ( this ) taking Amitriptyline 10mg 2 tablets at night. I feel like my bones in my thumbs are going to snap sometimes. I do wear a hand bandage with the thumb in it which does help a little,get them at the pound shop if anyone wants to try them. Just wanted a moan to someone as I seem to have been poorly for donkey;s years.

[Hidden]

Hi - sorry you are suffering so much. I'm not quite sure what you mean though when you say that people here all seem to know what they have - and you find this upsetting? But from what you are saying you know what you have too? Did your rheumatologist give up on you or did you give up on them because you couldn't tolerate the drugs they wanted you to take?

I don't know what I have and I can't tolerate drugs at all so far so am currently unmedicated. I do find it very hard sometimes but I do also know that I did have RA - it's just that it's gone away and other things have taken its place. And I have a new rheumy who didn't see or diagnose me himself so he has cast some doubt on this diagnosis now.

And no one knows what my newer symptoms and blood results mean now so sometimes this really scares me - mainly when I'm feeling ill or in pain. And at these points I'll find myself envying people who know exactly what is wrong with them and can tolerate the drugs for RA. Mostly I realise that I'm very lucky to have mild/ non erosive RA that doesn't require heavy duty meds.

Is this what you mean? I know it's very lonely being in pain and being too allergic to drugs to be treated. Maybe you could get referred back to rheumatology and try a new medication? They are changing and developing new medications all the time so don't despair.

You aren't alone. Twitchy

[Hands_1 in reply to Hidden]

It is me I think, I was getting static shocks up the arms thats what the Amitriptyline . This works but the thumb is now jumping out of the joint. I never asked what was wrong and my doc says I have RA, the hospital said I had the Asti one as well but they do not know,they were not sure. I should go back to my doctors, but I am a carer for 2 people at home. Not a lot of time I have.

Thanks Twichy

[Hidden in reply to Hands_1]

Not sure what the Asti one is - osteoarthritis? Static shocks up arm sound like nerve compression so you maybe need to go get nerve conduction tests to find the source. I spent 3 years on Amitriptyline but finally it gave me severe chest palipiations. I miss it because it helped me to sleep! X

[Someonesmother]

sorry you are feeling so isolated. I am one that doesn't know what they have. they are treating me for sero neg RA but rheumy thinks it may be something else. I too have huge intolerance and side effects to drugs and am battling through trying them at the moment. would you consider going back to see someone? Maybe you also need to see a neurologist by the sound of your arm symptoms. As a carer you need to look after you too, because if you fall apart the people you care for will have to go in to care. You need to look after you too. I would make contact with your drs and see if you can establish contact again or go to GP and let them know what is going on and ask for a referral to a neurologist to at least see if they can resolve the static shocks you are getting.

[Godandme]

I have gone off all drugs and am on a strict diet. I have had very little pain. Definitely prefer the diet rather than all the side effects of methotrexate etc.

I wish you all the best

[Ali_H]

Not to put too fine a point on it ... You need to make time to get back to your doc and get answers and things sorted for you because if you don't things will probably get worse and then how long will you be able to be an effective career for two - you need to take care of you too!

Dietary changes may help with inflammation but if it's a trapped nerve issue or such like you can eat all the veg you like but the nerve won't just release on its own!

Sorry for such a pigheaded 'that's what needs doing' reply but I feel 10 buckets of understanding and sympathy from me at this point will be of no use to you!

All the best

Ali

[determined56]

It is difficult for any arthritis to be initially slotted into its right hole..My rheumatologist was lovely telling me I have had a RA flare in the past but now in remission but with osteoarthritis raging on need not take any extra drugs as already on alot (gabapentin, tramadol, steroids & omepprazol) and advised there will always be an element of pain and fatigue .

I have an open line to phone my rheumatologist if another flare of RA happens .

Going now go have my hand splints sorted...

So you must look after no.1 if you don't you won't be able to cope and at some point GO into melt down ...take care

Hugs to all

[Hands_1 in reply to determined56]

Thanks, as I said am on a couple of drugs, was okay till I went to a hot country then come back and it starting over. Will go back to my doc.

Was either gabapentin or the amitriptyline. mind it knocks you to sleep at night.one tablet for bones which you take once a week sitting up not lying down. So now it is up to the doctor to look after me.

[sylvi]

Hugs from me and i am sorry you are suffering,may i suggest you go back to your rheumy and get some more help as the drugs are a lot better now. It is trial and error with us all before we get the srugs that suit us. Perhaps the mtx could be taken by injection as i have heard that has less side effects. Knitting is something i struggle though i don't do a lot only plain knitting. Crochet is something i can't do. I do adult colouring which i enjoy no end and i can lose myself in it. It calms and relaxes me.xxxxx

[Hands_1 in reply to sylvi]

Wonder id anyone took the injections that were on trial. There was a new drug and a one that did nothing. I read through the papers and did not agree to take up this offer.

Anyone else been offered it?

[magglen]

I am sorry you are suffering so much but please do go back to your rheumatologist as RA doesn't go away and can get worse. I was on Methotrexate to start with but it gave me tummy cramps. I tried another two which didn't seem to have side effects but also didn't make me any better. I was then put on Enbrel ten years ago and I am now back on my feet and walking 2 - 3 miles every day. I also walk with my local ramblers [albeit the pensioners group] and did six miles last week. So PLEASE don't give up but go and get the right treatment.

[Hands_1 in reply to magglen]

I think they gave up on me as I told them at the hospital I wanted to come off the methotrexate as they put me on a higher dose. I was going out one night (same day as an extra tablet) had a out of body experience,then when out my hands went into the cramps and would not stop. Needless to say the girls took me to the hospital were they thought I had a stroke,I hadn;t. So I said I was not happy it scared me. So they wrote to my doc and told her that they had discharged me as I did not want the tablets any more. This was about two years ago.

Magglen I will make another appt to see my doc. will be about two weeks trying for an appointment.

Thanks to all.

[Hidden in reply to magglen]

I agree that Hands_1 needs to get more clarification about what might be causing the problems she is still encountering. But I also just want to query this idea that RA never goes away as a statement of absolute fact. I know is very unusual for RA to go away if it is clear cut seropositive RA. But if it's anti CCP negative borderline RA and is diagnosed and treated early enough with a drug like methotrexate I believe that it can occasionally go away. I can't recall the name of this type of RA but this is a syndrome rather than one disease so I believe RA comes in many forms.

So far mine has gone away according to my rheumy. I'm not saying it will stay away but for some people, early diagnosis and aggressive treatment appears to be enough to see it off. I'm one such. My RA was diagnosed and my new rheumatologist has agreed from my description of my symptoms and my positive rheumatoid factor that I did have RA because I met enough of the specific criteria. I do have bits of arthritis but no real joint pain worth mentioning. I still have fluctuating/raised inflammatory markers but he believes this must be an indication of a different disease process - non

rheumatic. So it's important to remember that other completely unrelated diseases and problems can cause symptoms such as neuropathic pain and rheumatologists may not be the right specialists to turn to. A good GP would be better.

[emma88]

You asked to see a occupational therapist? My doctors kept ignoring me when i said i was having flare ups and mg wrist was hurting, he kept saying cos my bloods were fine theres nothing wrong when there clearly is, i went to see a occupational therapist and learnt stuff i didnt know about like the types of diformaty in my hands she set me up with wax therapy and its really helped, she also got me in with a nurse which i wasnt seeing i always saw a consultant but never a nurse so iv gained alot of deformaty which could have been prevented years ago, the therapy has helped quite alot obvs it may not help with you or you may have already seen one but just thought id try and help maybe

[flow4 in reply to emma88]

The occupational therapist really helped me too.

[Hands_1 in reply to flow4]

How do you get to see a one, I thought they were just for helping with adaptions.

flow4

[Hands_1]

Never heard of wax therapy,I went to get my nails painted and the chinese woman who was doing them covered my arms and hands in cream,then she massaged my arms then down to my hands. I remembered the wonderful feeling when she massaged my bones in my hands. The fat looking wrists went down to a thinner wrist,but This was done in Australia in November last year. I know after the doc put me on water tablets that after a couple of weeks the pain subsided a lot. That was the last time I saw a doctor in the muscular skel. dept., and was seen by my doctor once. I have not been back to the doc, but today managed to do a bit of sewing. So it may be that the bloating is the trouble. I still wonder about the jumping of my right thumb though.

Thanks Emma 88