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Date: 07.04.2012
From: SophieB

Subject: Help please

Hi, I'm 23 and I've had what my doc calls 'undifferentiated undiagnosed autoimmune disease' for 6 years. My main symptoms are rheumatoid arthritis, however my bloods never show anything. According to every blood test I've ever had, I am a normal healthy 23yr old. Let me tell you, I'm certainly not healthy.
As you can imagine this makes my treatment difficult because I don't fit into any one catagory, I'm a combination of a few.
I have been given a number of drugs- methotrexate is the most recent one. The side effects for me wern't too bad, I felt sick but it wasn't unmanageable. You just learn to get on with things. I've been on mtx for 2 and a half years, with no effect. Nothing seems to be working. I was told to increase my dose of steroids so I was taking 30mg for a month, still no effect whatsoever. I just had all the side effects and put on loads of weight.
I'm due to start taking Mycophenolate but I'm scared. I really don't know if it's going to be worth it. The side effects are pretty extensive and it takes a while to work, as with many of these things. But I keep thinking, is it worth taking these pills if they make me feel like crap all the time but they don't even help my joints and mobility? And what about the lethargy and the, what some call, 'brain fog'? Is it even going to help me?
I'm really at the end of my tether.
Somedays my joints are so bad I can't get out of bed. My fingers are fat and painful so are my wrists so getting dressed,eating with a knife and fork,holding a cup of tea etc is painful and difficult. I can't do anything. I can't walk my dogs anymore which I used to do a lot, I can't even get down the road because my knees and feet are so painful and swollen and my hips hurt after a while.
I can't socialise,I can't go shopping or to the pub with my friends because of the mobility and lethargy. My friends don't seem to understand what I deal with and they eventually stopped inviting me places because they felt I was making excuses or getting lazy, now I have one friend. Who seems to be getting more and more distant. I can't meet new people because I can't get out and about anywhere because of my joints. I am literally on my own.
My mum is quite supportive but I think even she doesn't completely understand what I'm going through or how I feel. I guess it's hard to relate to unless you're suffering too.
I have thought about suicide and attempted it twice last year,had friends at the time who helped me through it, without the family finding out of course.
I've taken cocaine and have taken pills,because I feel so crap I want to escape everything.
I'm at the point now where I look at my life and think 'what the hell is wrong with me' things have gotten so bad I'm doing drugs?! Really?! It isn't me at all.
I used to be a happy-go-lucky person, positive and bubbly. Now I'm miserable. Cynical, pessimistic and depressed. I just don't know what to do anymore, my joints are KILLING me!!!!!
P.s I have stopped the drugs. (the illegal ones)
Any advice would be really appreciated guys.
Sorry to ramble on.
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Date: 07.04.2012
From: Lynnr

Subject: Re: Help please

Hi sophieb firstly I want to say how sorry I am that you are suffering so much it is just not right especially at your age, I know what your going through although I do have a diagnosis but the pain can be unbearable, I am 35 and I have psoriatic arthritis it shows symptoms very like rheumatoid but it doesn't show up in blood tests I wonder has this type of arthritis been ruled out? I also have fibromyalgia, reanaurds disease I have been on most of the disease modifying drugs and I am about to go on my 2 Nd anti TNF injection I was diagnosed nearly 2 years ago as as of yet have not been pain free once they seem to be getting further away from getting my medications sorted than when we first started, I have felt down and very depressed lately and even had a few really bad thoughts in my mind but I need to carry on as I have 3 kids to keep going for, this forum has helped me loads it's great to see that it's not just you that's going through the tough time there is actually loads of us in the same boat and that can help, I hope you get a diagnosis soon as I can't imagine what that would be like but i would suggest any time your feeling down or angry come on here and rant it really does help, chin up and take care x
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Date: 07.04.2012
From: Kim

Subject: Re: Help please

Hi Sophie and Lyn
Sophie sorry to hear you are having such a tough time, well done for coming off the illegal drugs! I am 34 and have ra but my blood test results vary, sometimes I have high inflammation readings and sometimes they are normal yet my level of pain is always the same. I have several other symptoms on top of painful, swollen stiff joints, yet my lovely consultant will only go by my blood test results! I feel like Im not getting proper answers as to whats wrong with me and feel very frustrated but dont know what else to do. I have days where I can cope with the pain and fatigue but other times I literally break down as cant cope. I too used to be very outgoing and fit and healthy but gradually my life has been turned upside down. I had to give up my job, my friends like yours dont really understand what is wrong with me. The trouble is I only really go out when I am well enough so family and friends only really see me when Im at my best so they look at me like Im faking it when I try to explain how I coudnt move the day before. This forum has been so good for me to help me realise Im not alone and there is hope. Im also very lucky to have a very supportive husband and I also have two young children who make me get up and keep going with life. What I will say is dont let yourself get into a rut, think about what you can do rather than what you cant do. Take each day as it comes and try not to think about the long term, I tell myself that it's just a pain Iv got to get through each day, rather than thinking Iv got a chronic illness which im going to have for the rest of my life.
I take predisolone every day and co codamol and have recently started cimzia. Dont be afraid to try a new treatment because of the side effects you may get, anything is worth a try if the side effects are too much for you to cope with then Im sure they can find you an alternative.
Like Lyn says just come on here and have a moan as someone will always respond.
Take care and I hope things improve for you soonand you get a diagnosis xx
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Date: 08.04.2012
From: Sean

Subject: Re: Help please

Hi Sophie - I have had undiagnosed arthritis "non specific" - my father had ankylosing spondylitis since age 18.

I have been researching my arthritis for over 15 years and am wholly convinced that nearly all autoimmune diseases start in the gut and that the food we eat can have a massive impact on our health.

I have been mostly wheat and corn gluten free for over 15 years and my pain and arthritis is probably less than 10 percent of what it was - please give it a try it will change you life.

My dad is better on my diet but his as was too advanced to stop the hip replacements. I am sure I would have needed the same without my diet change.

Please look at SCD diet - low starches. Good luck!
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Date: 09.04.2012
From: SophieB

Subject: Re: Help please

Thank you for your comments everyone,think I will probably be a regular on this forum!
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