Very early days, feeling scared and alone

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Sorry if joining now is inappropriate but I'm going crazy. Presented symptoms of past few months to GP last week, who immediately suggested RA and wrote out blood forms. Went on holiday next day (still abroad) and my body has gone into meltdown. Can't function, joints so painful and so exhausted. Haven't even got a formal diagnosis yet but I'm really struggling and my family just don't get it. Think they think I'm malingering. Is it possible for things to accelerate so quickly? Literally last week (past 2 months) 3 joints have been affected, now there are about 10. I'm certain it's not psychosomatic. Thanks

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  • Posted

    Hi Cathy, I'm sure you're not malingering! It's a very bizarre disease where you can be OK all day then feel incredible pain build up in a joint having done nothing to bring it on.  I'm not sure what to suggest while you're abroad with no definite diagnosis unless a doctor may consider some steroids short term till you get home.  It's a steep learning curve for you and your family and finding the right treatment for you  when you've got a confirmed diagnosis can also be frustrating and lengthy process.  I hope you can get some relief while you're away. Good luck Carol x 

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    • Posted

      Thank you for replying Carol 303055. I didn't really imagine anything could be done just yet,  I just wondered if it's normal to experience such rapid progression of symptoms or not?  I've actually counted 20 painful joints now. Perhaps RA doesn't do 'normal' .......?  Steep learning curve indeed but finding this forum is weirdly reassuring (if not a little scary). Best wishes.

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  • Posted

    Sorry you are struggling Cathy, I started with symptoms of R. A. Whilst abroad and felt dreadful and in a lot of pain with my joints. My foot being the worst. Felt so tired. I think the heat didn't help, plus you do a lot of activity whilst on hols.  It can be lengthy procedure to get the exact diagnosis, as everyone is different. Would it be possible to ring your Dr or medical Practice and find out the results of the your blood tests? If it shows high levels of inflammation, then maybe As Carole has suggested, Steroids could help and a copy of your results could be emailed to you to show a Dr abroad. Not sure where you are holidaying, or how difficult it would be for you to do that.  I'm sure your not malingering, it's hard for others to understand. Let's hope you get some relief soon. Take care.

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  • Posted

    Cathy,  this forum is for your frank discussion concerning your symptoms so it is absolutely appropriate.

    Strange how a lot of us have been, or are on holiday when we suddenly get this awful condition.

    I had just come back to Canada from a UK holiday and had to visit my family doc who referred me to an RA specialist after a blood test,  so everything happened very quickly for me.     I believe you need a proper diagnosis to know for sure you have RA as soon as possible,  then you can begin proper treatment and come to terms mentally with your conditiion.        I am just very annoyed that I suddenly have RA when all I did was twist my right knee while on holiday,  this is not fair,  I have always kept myself very fit, is what I have asked myself,  because no-one can give any definitive reason why.  So I now do what I am told to stop the progression of the ailment and I take Naproxan before the pain starts.  Demand the facts, do what you need to do to combat this thing , then you will be mentally in charge.   Good luck Cathy,  post again when you have been properly diagnosed.  We may all benifit from your own discussion in some way.

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    • Posted

      Hi David, that's weird because I fell on the beach on my backside whilst on holiday and  although my feet were swollen, which I presumed was from a long haul flight. The Specialist said I must have injured my foot, but I knew I hadn't. It took a long time to get a full diagnosis. I do feel heat aggravates my condition also. Very strange isn't it.  It does take a while to come to terms with RA. I also tried to keep fit. It's good to talk to people on this Forum, especially Cathy.

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  • Posted

    Hi Cathy, I reckon it can happen that quick, my RA seemed to happen fast enough, was it your finger knuckles first ? that's commonly a starting place, but there are lots of different Arthritis autoimmune diseases, like you say driving you crazy, hope you get diagnosis medication soon.

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  • Posted

    Feeling slightly less frantic, and unusual now, thank you so much Linda, David and Martin for your replies. I fly home on Thursday and will pursue my diagnosis. The worst pain is in my knuckles and finger joints on both hands, but my wrists, elbows and shoulders are painful too. I'm dosing up on maximum paracetamol and naproxen and opting out of anything physical. Makes me a bit of a holiday party pooper but that's something I might have to get used to sad 

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  • Posted

    Hi Cathy. I am glad you're feeling calmer.

    I developed RA less than a year ago. I perceived it as sudden, but as I learned about RA I now see there were symptoms I just ignored. The "sudden" onset I noticed was that my slightly achey feet became rapidly painful and sensitive. I developed puzzling knee and hip pain. My hands became painful, stiff and sensitive. I had an overwhelming fatigue in my limbs. Quite  separately I would be overcome by a more mental irresistible mental tiredness, so that I had to sleep. This was the onset I noticed of the course of just a matter of days. 

    The symptoms I did not notice had preceded that by several months. A nigling shoulder pain that didn't respond to anything. Fatigue that I mistook for some expression of depression. An overwhelming tiredness in the middle of a normal workday, so that I had to find a way to sleep. Annoying fluctuating stiffness in my legs on getting up from my desk. An unusual lack of stamina doing either hard physical tasks or just normal tasks and chores. The mystery things I just ignored and figured I was just unfit, or getting old. When the hand and foot pain got annoying I went to the Dr who confirmed I was getting older. The next week, when I could hardly sleep and moving was pain I saw another Dr, who got blood tests. A few more days and I asked for the prednisone. I still had another month before seeing a rheumatologist. 

    I am sorry to say I still had a patchy few months after that. Prednisone made me act a little strangely. Waiting for DMARDs to take effect was a matter of waiting and hoping; including starting and dropping one that made me too nauseous. 

    Nearly a year on though, I have little to no pain most of the time. I still have some fatigue issues and am learning to recognise that and change my behaviour.

    I am a volunteer firefighter on top of my normal work and I had some months of little to no attendance there, but am back to training and responding for the last few months. 

    My response has been to learn as much as i can about what is going on. 

    Please be a cautious and critical learner, there are plenty of opinions that should be treated with scepticism. 

    I believe we're all slightly different in our experience, my best wishes that you progress well.

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    • Posted

      Thanks Linda. I see upon re-reading that have underplayed how terribly miserable and distressed I have been at times!

       I have been incredibly lucky to have understanding and support from my employer, and my partner!

      I took advice from my rheumatologist to see a psychologist and it was good for me to talk about how I was feeling. She directed me to good information on strategies for coping and adapting. 

      I have sympathy for those of us on these types of groups who suffer on. I realise my experience is short and the disease is unpredictable. But I would still offer Cathy the hope that treatments can be effective.

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    • Posted

      I think most of us underplay the emotional and psychological side of the illness. We try not to complain to much outside of your immediate family as you don't want people to think you are always moaning and this is on going.

      Must admit, sometimes I feel I could do to see someone about the psychological side of the illness, have some dark days.

      I think Cathy will benefit from treatment and it does help a lot.  Maybe I may do something myself. Thanks for your input.

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  • Posted

    Hi Cathy, interesting to see your post as my onset was similar, I too came back fromholiday with knee pain and then quickly became horrific and overnight hand pain. I am a physio so had an idea what it was but nevertheless it was horrible and hard to accept.  I had a roller coaster of a journeyvwuth methotrexate, both oral and injections (injections was less for nausea) sulphsalazine, lufluzamide but nothing seemed to work and I took sbout 3000mg of naproxen per day!  Now I am on a biologic and it us so very much better, I do have some fatigue and have to listen to my body and to rest more, as you will learn to, but no joint pain and I am very active.  I wish you the very best, its early days, be patient with yourself.  It is a dreadful disease, but there are wirse diagnoses for sure.  My main advice would be to ask for what you need  keep knocking on doors, or even kicking them down if you dont get treatnent or answers you need.  Keep logging in, always happy to help in any way we can on this site.  Theresa

    ller  

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  • Posted

    We have more than our name in common. This is EXACTLY how my RA presented itself to me in 2013. I left England thinking I had the 'Flu....Aching joints and a bit 'Coldy'. A week into our 6 week 'Dream break away ' in the sun I found myseif in absolute agony from head to foot. Literally EVERY joint in my body hurt...despite Voltarol CoDydramol and Tramadol painkillers. On our return I went to my GP...and following copious Blood tests I got the Diagnosis of Sero Positive Rheumatoid Arthritis. I totally understand the feelings of 'Being alone' with it and people only hearing the 'Arthritis' bit and assuming it's only a joint problem...which of course it isn't. Have you been in touch with NRAS...they can give you advice and support..??

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