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Recently diagnosed with RA 😔 looking for support

Posted , 8 users are following.

michelle1901
michelle1901

Hi I am 35 , married with 3 children 2 older girls and the youngest a boy age 1. Since January I have been suffering with what I thought was muscular strain from exercising. I was wrong of course. I was diagnosed last week with RA after 3 trips to my doctors and then being referred to a rheumatologist. The pain originally started in my arm and wrists, then fingers, then ankles swelled up then my knees and now it's back in my arms again. I have so far only had naproxen, tremadol and 2 Steriod injections( one in my bottom and one in my swollen knee)which haven't helped really. I am waiting for my next appointment with specialists to discuss which medicines to try. I had a chest x Ray, blood tests and a foot x Ray all in one day. So the results of these should help them decide what to try. I am praying to have a day with no pain, stiffeness and swelling and to be able to look after my baby without help. Just changing his nappy, picking him up and dressing him is a massive struggle!

2 likes, 26 replies

26 Replies

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  • Rowbirdie
    Rowbirdie michelle1901

    Posted

    Hi

    i was the same- pretty much knew what was wrong before I saw the consultant as had been researching a lot. I still do research a lot, over everything, as it gives me some sense of control when there are things I can't control going on.

    I have had to go down a few gears as I was very active before I had RA , working 3 days and looking after grandchildren. I managed to stay in work but didn't have energy to do anything in the evenings and still don't much now! We have a friend who is late 60 s now and had RA since 38. It was helpful to see how positive he was. Also a newer biologic drug has helped him enormously in recent years. 

    You asked someone else about not putting strain on joints. I had a session with both a physio and OT arranged by the hospital. Both useful. Ask if your hospital arranges this.  The message seems to be to move the stiff joints( open and close hands, move fett up and down and around etc) but spare the affected joints from extra strain. For me that means using 2 hands for everything, using my forearm if I can,carry a bag on forearm or preferably not at all. I bought a shoulder handbag to put across my shoulder as carrying anything pulled on my shoulder. I used to pick up my granddaughter with forearms from behind and pop her on the sofa to change nappy. I too have changed to having showers not baths!! I couldn't chop veg so bought more frozen stuff. I couldn't lift a saucepan so used a plastic jug to carry some of the contents to drain over the sink. Well I expect you ll find your own systems! Xx

  • helentc
    helentc michelle1901

    Posted

    Hi Michelle, 

    I really do feel for you as I know how horrible and scary this disease is. I was diagnosed with RA about 9 years ago (when I was 37) and totally understand the pain aspect as well as not being able to do simple things, such as doing a button up, holding a cup, opening a jar.  It's so hard.

    I also believe the way to treat this is through diet and postive thinking. Initially we are all given medicine or steroid injections as we HAVE to lose the pain and inflammation - life becomes unbearable if we dont. But I think the longer you have this disease, the more you learn about it and how it affects you personally (as we are all different). 

    When I was first diagnosed I was studying for accountancy exams and I thought the pain in my neck and wrists was due to the writing/studying. After seeing my doctor he immediately tested me for RA ad referred me. I remember sitting my exams and wondering how I was going to get through the paper as I could barely hold a pen, let alone write for 2.5 hrs without a break.

    I was prescribed Methotrexate and was given a steroid injection and they both really helped. I was also prescribed Meloxicam which is an anti-inflammatory.

    After 2 years I felt so ill on Methotrexate that I stopped taking it. I think my body was telling me it didn't need it as the RA was going into remission. The consultant told me it may not always be in remission and about 6 months ago it started to rear it's ugly head again. The consultant wanted me to take Hydroxychloroquine but when he told me one of the side effects is a detatched retina, I chose not to take it.

    It was at this point I decided not to take any more tablets (other than my anti inflammatories) and look at my health options. Unfortunately it took me to reach my lowest point where I was in complete agony, overweight and at my wits end to do anything about it.

    For 5 weeks now I have been on a dairy free, red meat free, sugar free and tomato free diet and I can really feel the benefits. I still am in pain to a small extent with my hands, but generally I feel better. I've lost 11lbs so far and need to lose more as I am very overweight, which didn't help my joints, but I am feeling positive about this natural way of treating this disease.  Like helen263490 says, the heathy way can work.  Believe me, I love tomatoes, especially in pasta and curries and I am a certified chocoholic, but my mindset changed as I couldn't bear the pain anymore.

    I do understand taking medicine is what we have to do at first, but to really get to grips with this disease, I believe we have to look at what we are putting in our bodies. And I can honestly say for months I have been wanting to do this way of eating, but just couldn't find the will to do it. But I am so glad I did.

    We all  know how you are feeling, RA is so horrible and it's hard for people to understand who don't have it. I am kind of fortunate in a way (but in a not so good way) as about 5 years ago my husband was diagnosed with it too. So when either of us have a flare up, we totally understand the pain.

    These forums are great as you can reach out to people who really do understand.  I hope any of what I have said is helpful to you smile

    Helen

     

    Emis Moderator comment: I have removed the blog details as we do not publish these in the forums. If users wish to exchange these details please use the Private Message service.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • michelle1901
      michelle1901 helentc

      Posted

      Hi Helen

      Thanks for your reply and advice. I have made a few changes to my diet recently. I drink green tea, only have milk on cereal. I do like my meat tho but rarely have tomatoes. I have lost 2 stone since my baby was born a year ago. I have lost 9 pounds in 3 weeks tho due to this illness as tremadol makes me feel very sick an drowsy and lose my appetite completely. Can I ask I have noticed my glands are always swollen first thing in a morning- is this something you and your husband suffer with? It's been this way for weeks now but does settle down as the day goes on. I am only taking naproxen currently and ibuprofen as my next appointment to discuss medicines isn't until 23rd June. So I have another month of feeling stiff and pain it seems😁.

    • helentc
      helentc michelle1901

      Posted

      Hi Michelle, 

      It's great that you are watching what you eat. If you can bear it, try skimmed milk if you aren't using that already.

      My glands only swell up if I am utterly exhausted and overdoing it. However I have a history of tonsilitis and glandular fever (used to get tonsilitis at least twice a year, every year) so I never know if it's linked to that or not.

      Apparenly we should also cut out citrus fruits as the acid in those isn't good for our jouints.  I do believe we are all different and what affects one, maybe doesn't affect another.

      It's all very much trial and error which is pretty rubbish when you are in so much pain.

      Helen 

  • helen263490
    helen263490 michelle1901

    Posted

    Hi swelling of the glands in the morning can be typical. Really try and remove gluten this week in your diet as that was my key change x
    • helentc
      helentc helen263490

      Posted

      Hi Helen, 

      I have too heard that removing gluten is key. smile

       

    • michelle1901
      michelle1901 helen263490

      Posted

      Hi Helen

      I have heard about removing gluten from my diet. I may have to give this a try. Yes I use skimmed milk and have done for years. I rarely eat cheese or yogurts. I am feeling rather good today about 70% well so that's a positive. The only problem with RA is that it comes back to bite you when you think your having a few good days. It's a very unpredictable illness xx

    • helentc
      helentc michelle1901

      Posted

      It certainly is a very unpredicable illness.

      I find that when I carry heavy shopping my hands are in agony afterwards. So now when I pop to the local shops I use a sholder tote or backpack and don't buy too many heavy things at once. 

      It's the little adjustments that can make a big difference.

      Helen

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