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Frightened newbie

Hello, I was diagnosed with fibromyalgia in 2018, since that time I suffered random swelling and pain in my fingers, often just one at a time. In February of this year one finger became so swollen I was unable to bend it my hands both hurt so I asked for bloods and x-ray to check for arthritis I was told they were both negative, it was all down to fibromyalgia. Since March of this year I began suffering with daily pain, swelling and stiffness in my hands, shoulders, elbows, wrists, ankles and soles of my feet. The pain would wake me at night, there were times I could hardly walk, my husband had to cut my food up as I couldn’t fully grasp utensils. I called my doctor again who referred me to a rheumatologist I saw her last week, today my doctor called to say results were back from a blood test taken this week, he said levels were significantly high indicating I probably need aggressive treatment for inflammatory arthritis. I was advised to call the rheumatologist and get my July telephone appointment brought forward. I am also awaiting an appointment for an MRI scan of my hands. I am feeling like I’ve been handed a death sentence, fearful of my future and what it may involve. Google searches talk about life expectancy being 10-15 years less, I’m 61 now I have visions of not being around past 70. I’m hoping my thoughts are all from shock and I will learn otherwise on this site. Thank you for reading. 😕

Answers

  • Hi obbythesea

    Welcome to the forum,you are going through a lot at the moment but you have come to the right place as everyone here has a form of arthritis and goes through various levels of pain just like you. Some have had Arthritis a long time, I have had Osteoarthritis for15 years and have reached a good age of 74years and still going true I have had replacement knees and hip and can manage my pain. When you go to your appointment the Rhumatologist will work with you to find a way for you to live your life with as little pain as is possible. If you need to talk to some one we have a helpline you can contact it is 08005200520. The forum is very friendly and full of sympathetic people who will help you feel very welcome to the forum. The most popular forums are Living with Arthritis and Chit Chat and Vals cafe

    Take care and hope all goes well with you

    Christine

  • LilymaryLilymary Posts: 183 ✭✭

    Hi Obbythesea, I'm sorry you’re feeling so frightened at the moment, some diagnoses can hit very hard, specially when you are in so much pain that’s been building up for a while. The one thing I would suggest is (apart from finding this site), do try to stay off the Internet for a while. Trust in your rheumatologist, and try to stay calm. Things are very seldom as bad as the picture you can paint with the tools provided by Google 🙂

    Staying calm wil also help you to manage your pain a bit better, and will help you to deal with whatever happens next in a way that isn't too overwhelming. Your rheumatologist will have seen this before and will know what they have in their armoury to help get this under control and improve things for you.

    So for now, just breathe, find small pleasures to make your day a little happier, and hang on in there.

  • Hi Lilymary

    Thank you so much for reading my post and for your kind words of wisdom. I know you are right staying calm will help, I do feel overwhelmed at the moment I think I may have fibromyalgia alongside RA therefore between joint and muscle pain I am not getting any restorative sleep which doesn’t help. I have a rheumatologist calling me on Monday morning so hopefully that’s the start of a management process.

    I hope you are keeping safe and well in these strange times we all find ourselves in. I think I will try to navigate this site now, I wasn’t sure where to post. Things I have read so far people seem so kind and helpful. Thank you again

  • CrookeseyCrookesey Posts: 66 ✭

    Hi Lilymary,

    I’ve been there, done it and come to terms with it, just get your positive head on and you’ll be fine. If you are prescribed Methotrexate and it doesn’t suit you Metojet pen syringes are available, the nine pills taken one after the other made me very ill, they even caused a very painful skin infection, but having said that oral medication has never suited me.

    I hope to reach age 73 in June, I’ve just got back from a 5 miles dog walk and am about to get out on the garden, I can’t manage really heavy work, and working at heights are a thing of the past, but other than that I’m a lot fitter than many none R/A sufferers. As my beloved grandfather used to say if anyone started moaning about their health “There are folk lying in their graves who would love to be as sick as you”.

    God bless. 😃

  • FranFran Posts: 5 ✭

    Hi Obbythesea,

    I have just been diagnose with rheumatoid arthritis and fibro to. It has been a long journey to get the proper diagnosis. 1st i was sent for full body mri scan for nerve pain. Have shooting pains in my legs and ankles. it came back clear. Next x ray on my hands and fingers clear. I had pain on most parts of my body. Was then refer to rheumatologist. They put me on short course of prednisone steroids. Cant tell you how much they helped me. About to start course of Hyroxychoroquine. Ive learned along the way our bodies are all different and how we respond to different treatments. Your rheumatologist will put you on the right track and you will be monitored very carefully. You will be in safe hands.

  • Thank you for your response Fran. Sorry you are suffering with fibro and RA also. I was put on prednisolone too, what a relief I’m on the 3rd week now weaning down the dose, pain continues to be debilitating in the morning 🙁I’m also on Sulfasalazine I was told the nice guidelines don’t recommend putting a new patient on methotrexate during the pandemic. Trying to stay hopeful. Hope you are doing well.

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