Any advice welcome

I have been suffering with joint pain for about 10 years it has recently got worse all my blood tests are normal i have just been diagnosed with reynoyds but the pain i get is in all my joints, ankles,knees,legs,shoulders,elbows,wrists and fingers it is extremely bad in the cold weather however it can flare up at anytime. I constantly get pins and needles in my legs and arms so bad i almost fall over or cant feel body parts. i feel exhausted and miserable when i have flares.I have been to see my doctor on countless occasions and two Rheumatologist themost recent one made me feel like im insane offering me anti depressant because i burst into tears when he compared my pains to aches n pains from flu!!! I have had chest pains and been for xrays on my chest and hands and nothing shows up. I have also been sent to physio because im hypermobile but this made it worse. does anyone have any suggestions of where i go from here?

5 Replies

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  • It seems to me that you need a good long conversation with your specialist nurse. Do you know who she is? The Raynaud's and Scleroderma Association can help you there. You need to understand what is happening to you. The way I deal with my frequent lows because of my Raynaud's and Scleroderma is to distract myself and get entertained. While I am doing something interesting I am not thinking about myself I find, and I need a lot of rests.

    Life will get better some time.

  • My joint pain is connected to the food I eat and cutting out the ones that cause pain in the night works. You would have to be ruthless in cutting out foods and leaving them out for a few days to see if it helped.

  • thanks sally i have tried cutting out some things which people with arthritis have said eg eggs tomato dairy ect but nothing seems to work hope u have ur pain under control now. I will just have to keep searching until i find an answer.

  • I had exactly the same symptoms as you plus some others. I repeatedly went to the doctors and was fobbed off for years with various diagnoses...menopause.....imbalanced muscles etc etc. eventually I became so ill I couldn't move and then they took it seriously. Now I have a diagnosis of secondary Raynaud's and rheumatoid arthritis. My advice would be to plead with your GP for a referral to a rheumatologist and then plead with them for an ultrasound scan. That's what clinched my diagnosis. Good Luck!

  • Thank you for the reply I have seen a rheumatologist twice but I was well on both occasions.So they were very dismissive. I can go months where I don't get any flares and can do everything then out of the blue usually when I get cold or there is cold weather(I feel the cold in summer too) I get aches all over then extreme pain in all of my large joints,wrists and fingers. Last year I had about 3 months of terrible pain and my doctor gave me diplofenac which made me so I'll I couldn't get up for 3 days. I wasn't well enough to go to the surgery so I suffered at home. When I was well enough I. Went back to the doc and asked to see a rheumy who ran all the usual blood tests she then referred me to physio because she said i was hypermobile and this was the cause of my pain! I had physio before and it made it worse but I went again anyway. The physio said I was not over mobile enough for this to be the cause and sent me back to the rheumy, who was a stand in and said lots of people have aches and pains and as I had a chest infection recently the were probably cause by flu! at which point I burst into tears and he offered me antidepressants! I got up and walked out in tears totally fed up! If I am depressed it's because stupid doctors don't listen or understand how miserable this is making me! I'm glad you sent me this message it helps me to know I'm not losing my marbles!

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