Feeling Down: I originally got diagnosed with RA at... - LUPUS UK

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Feeling Down

Buttercup87 profile image
5 Replies

I originally got diagnosed with RA at 16 and in the last 10 years my health has just got worse and my list of conditions has been growing longer and longer.

I now suffer with RA, SLE, Osteoporosis and Raynauds.

Last week after years of back pain I finally got my X-ray results back from my consultant to find out I now have Osteoarthritis and Scoliosis in my spine.

I don't think I can take much more and feel like none of my treatments are working apart from the steroids, which are causing most of the problems.

Is anyone else in the same situation? Trying to deal with lots of different conditions?

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Buttercup87 profile image
Buttercup87
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5 Replies

Oh you poor love - I really feel for you. I have a diagnosis of RA and secondary Raynaud's and Sjogren's plus long standing Hypothyroidism. I'm really struggling too just now as I'm completely drug intolerant - have always had a very allergic disposition with lots of skin problems and bouts of severe Alopecia.

Presently I'm wiped out and trying not to sink into depression with severe peripheral neuropathy in both arms and legs, feet and hands. I'm newly on Gaberpentin - even at the lowest possible dose I'm dizzy and have suffered two falls because I misjudged where I put my foot at the weekend. RA seems to have been knocked into the long grass by three DMARDs I've been on over the last three years - plus bursts of steroids. I'm now off all RA drugs and steroids now waiting to see the neurologist - might be a long wait.

I've been told by my GP today that my RA seems to have morphed into general autoimmunity for the time being - which is why I often come here for support rather than the RA site where things are more focused on joint pain and erosion. I don't really know what to suggest, apart from counselling and pain clinic perhaps? Whatever you have my huge sympathy - you are not alone. Twitchy xx

Hodgson57 profile image
Hodgson57

My heart goes out to you I have been in flare for last seven wks and been finding it very hard at least I was 54 when they told me I had lupus and not 16 you have to try keep your chin up know its hard don't know what I would do if I did not have the support of family and friends and now have found this site just nice knowing their are like minded people out there that you can talk to take care hope your feeling better soon x x x

misty14 profile image
misty14

Hi Buttercup

I just want to say I'm sorry your collecting so many different conditions and I totally understand how you must feel as I've been doing the same thing over the years. Recently, for me it's been Osteoporosis which I hate the thought of but need the steroids so what can we do?. I've got similar back problem to you, Osteo arthritis changes and have a lot of help from A Pain Clinic so maybe you could ask your GP for a referral?. I have Raynauds, possible Lupus overlap, ulcerative colitis, hiatus hernia etc and it can feel overwhelming and depressing!. Sadly you are by no means alone but we can help each other cope on this site which is fantastic!. I hope you feel spiritually better soon. Take CareX

gazzasoens profile image
gazzasoens

I was diagnosed about 20 years ago and am now finding it hard to get anything diagnosed. My Consultants and G P. Just say take painkillers it's your Lupus. My back, shoulders, hips and knees and neck all kill me with pain. But can't get anything done.

gazzasoens profile image
gazzasoens

I was diagnosed about 20 years ago and am now finding it hard to get anything diagnosed. My Consultants and G P. Just say take painkillers it's your Lupus. My back, shoulders, hips and knees and neck all kill me with pain. But can't get anything done.

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