Plodding along

I don't expect anyone to reply just felt I needed to write. I've been in so much pain and so down for a month now. rhumy said ra is under control but my fibro is the pain. Now I understand and I makes sense that it's the finbo but... can you class ra being under control when you aren't living normally? I don't do things so not to anger the devil. going to an assessment say after I've spent a day with my friends just having cups of tea and holding their babies I'd be pretty bad. but I don't do those things so wouldn't be as swollen there for not active ? I don't know I'm blabbing but confused

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  • 'Under control' would be based on your DAS and CRP score. I also have fibro along with RA, and like yourself, have given up things I know aggravate them. I realise life for me will NEVER be normal again and I'll never be able to do things I used to enjoy. Sometimes, I find myself in a black hole, that gets harder and harder to pull myself out of, but then I remind myself there's people a lot worse off than me and that I'm just feeling sorry for myself, and that I'm an RA warrior and I'll continue fighting this awful disease. So come on sister get your battle gear on and continue the fight. ...xx

  • In this fight, is there any room for the boys?, I mean cant i hold your coats or something and cheer you on from the sidelines?

  • Leon there is always room for the boys as it means they understand what we are going through. .xxxxxxx

  • Erm thank you, i dont think i could fail to understand what we are going through really, the boys are fighting as well i hope on the same team.

  • If you have ra Leon your on our team darling.xxxx

  • Of course we're on the same team! I'd rather not be in the team at all but have never thought that men have an easier time than women.

  • Absolutely - It is unfortunate that you are here too, but I personally always welcome the boys (and men) Love the male gender! How boring would our lives be without you..

  • Never give in and never give up is one of my mantras and no matter how hard it gets keep fighting darling. Yes it is damn hard as i well know,but i never give in,(well thats a lie sometimes i feel like giving in,but know i can't/won't give in). Hugs to you darling.xxxxx

  • It will never beat me is also my mantra. I do sometimes surprise my very nice rheumy when I tell him this at my worst times!

  • And so many times, I think that the RA and Autoimmune docs don't really come from a place of anything "but education" - I put it that way not to denigrate the education by any means - I am in awe of what they go through to get their degrees and specialty. But I guess I am saying that someone that never graduated grade school can many times understand what you going through better because it is personal... Hang tight sweetie- You WILL get there, but it is never as fast as any of us want it to be..

  • You dont request or expect replies but i understand completely.

  • DArling your talking to someone who knows exactly what your talking about as i am exactly the same as you. I too have both ra and fibro and despite getting extra treatment i am still suffering like you. My ra is under contro as well yet my fingers are so sore and thats where the ra started. The rheumy said it was fibro,yet he increased my mtx back up to 8 where i was feeling brighter before he reduced them. He has also given me hydroxychlroquinne as well and as yet i don't really feel much benefit from it. I know i only increased the mtx this week so regarding that i will have to wait.

    So darling my advice is contact your rheumy on Monday and tell her exactly what you have told us. Hugs.xxxxxx

  • I had a rheumatologist who insisted my disease was under control despite the fact that I was so exhausted I couldn't function properly at work or at home. My GP was sympathetic, and I changed rheumatologists to one who understood that this was no kind of life. He prescribed additional medication and things did improve but it took a long time. Another year, probably. Don't give up, and don't let them give up on you. xx

  • None of us will ever be "normal" again ...but we're all warriors. United we stand in not letting this awful, life changing, disease win!!!!.

  • Oh My Gosh Janeellen - That is such a true statement "none of us will every be normal again", but I do strive to get back there if I can, and if not, I guess this will be my new 'normal' :-)

  • I was never normal to begin with. It's the pain and fatigue everyday that gets me down. Then I will remember there are worse things to have. After a few days I will be down again and the cycle goes on

  • it's hard I think to come to terms with. It just never ends, and that makes it much more difficult. Hope you are feeling better soon...

  • I know just how you feel you are just lost for words when you go to see the rheumatologist with the hope of getting help then they say it's controlled I just want to scream some days

  • Hi Lolly. I know what you mean. They consider RA under control when the inflammation is controlled. Doesn't help with any damage still causing pain. I find mild exercise and trying to pace myself is the only way, but please don't avoid pleasant experiences like meeting friends as they can make you feel good even if it only lasts a short while. I tell myself there's always someone worse off than me and am thankful I'm not in their position. xx

  • Hi, you need a pick me up I think & now winters drawing in "if you live in the U.K" you feel it. My advice is to get yourself a Sadlight it does not matter if it's daylight use it, I do as it does in time make you feel a little better " I have mine on now" & with winter fast approaching our AR & Fibro get worse. I don't hold babies 👶 anymore but wish I could as my arms aren't strong 💪🏽 enough but I wish, as my consultant hasn't seen me for a year"he's new" I saw the Rhemy nurse 3months ago & it seems I'm on my own, I try & cope, listen to my 🎶 anything to make me feel a little better & don't give up ever.Good Luck & hope you feel better soon.

  • Hi Lolly

    How long you have had RA ? Do you have RA or Fibro M ? I was being told that Fibro is curable but RA is not.I think the docs should diagnose this first . I notice u r going for an assessment.

    Holding the baby or lifting a jug is not causing you pain I think at the moment you have flare ups that is why you are getting pain and swellings. I have been diagnosed with RA for 13 years it has its ups and downs . My toes are distorted and there is erosion on my both ankles . i suffered a lot of in the past 5 months from inflammation.Taking mtx in higher dose , having turmeric tablets , some cider vinegar with a table spoon of honey , garlics etc whatever guidance I get from net search. Now after 5 months swelling has gone down a little.Physio is also helping.

    Please do not give up . This is the nature of the disease.I know it is hard but try to pick up your spirits.It i easily said than done but mind has got so much to do with our body.

    I am not a doctor but I told you what I fund helpful.

    Best of luck !

    Joya

  • I've had rafor 5 years and on 20mg met injections hydroxy chloroquine, ritixumab, nsaids and pain relief for that and amatriptline for fibromyalgia which I've had for 2 years. plus all my asthma medication :-(.

    Anytime I do something nice I flare up the next day with ra. fibromyalgia doesn't have a cure and u just have to do pain management.

  • Possibly i am wrong but my friend said she had Fibro for 7 years and no symptoms for 4 years,Possibly a remission or may be wrong diagnosis.take care

  • Hi Lolly, The best advice I can give you is to phone the NRAS helpline. We can only tell you about our own experience. This may help in many aspects, but NRAS have the Knowledge. All the very best.

  • Don't give up, start doing little things a bit at a time adding a bit more next time and don't give up going out with friends find which things make you tired or ache and work around them it does work but don't give up or the disease has won and don't for get your life is how you make it not the RA or the Fibro 🌹

  • I was diagnosed with ra five years ago (had it far longer). I was terribly sick and just getting by each day. The rheumy told me he had my disease under control because my inflammation markers (SED rate and CRP) were normal! Then he blamed any pain i was in on possibly having fibro. I went to a new rheumy who laughed and said, you don't have fibro, just uncontrolled ra. At the time I was on prednisone, methotrexate and minocycline. He added a biologic and life became good again, fatigue lifted and my pain improved tremendously.

    For the record my SED rate and CRP have never once been elevated, even when I had RF and Anti-CCP scores off the charts, sausage fingers, swollen knees, elbows and feet! Go figure! The tests don't always tell the whole story. My rheumy based everything on how I was feeling. I am grateful for that.

  • Dear Lolly,

    Don't give up is the key to recovery. I am not sure if I am in any position to share my experience with you because I recover very well and in remission after 1 1/2 year of being diagnosed of RA.

    Yes, we will not be the same again, though I am in remission, I do not feel pain in my body now but I still can feel the difference in my little joints. They are not as strong and with some senses when I close my figures and move my toes. So, I guess we just have to accept the fact that we are different and we must be strong to fight on.

    Once I tried to hold a baby but my arms were almost given way, I quickly sat down to avoid the baby from falling down from my arms. However, now I believe I am strong enough to carry a baby therefore we must continue to work on our body positively.

  • Thank you for all your replies my lovelies xx

  • I really recommend LDN for those who suffer from FM. There is scientific evidence and research on the effects of LDN on FM. I have a good friend who has been suffering with FM for a very long time, who tried it and the results were amazing in her words she hasnt felt as good in 14 years. More info ldnresearchtrust.org. This med has no toxic side effects and can be combined with RA meds. Worth a try and you usually need not wait long for the possitive effect. LDN for RA is amuch longer process.

  • I'm right here with you, the fight is hard!!!! I would love to have my old self back but realize this isn't possible. Having RA warrior friends is so important. Hugs and may your day get better. Julie

  • I'm reading and have been told recently that my RA is controlled and that Fibro is the reason for pain. I'm considered multi complex due to overlapping symptoms of Thyroid, Sjorgens, Pulmonary Fibrosis etc. It is hard to define, when being DAS scored to isolate the Ra symptoms.

    Also, I feel it is ok to sometimes feel sad for yourself. It is difficult some days to remain optimistic. I read Desiderata, the words I can relate too and feel lifted.

    Best wishes to all.

  • Sometimes we all have to plod along sadly. I also suffer from fibro and it is fustrating, you've only got to knock yourself and it's pain, taking a shower makes me feel like it's pins sticking in me, however, getting up and out and about does give my brain something else to think about and it all tends to go away for a while, likewise with my hands, the more I can keep them busy the less they hurt. Hope you feel better soon.

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