1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Hopeful but very scared

Posted , 6 users are following.

marie09535
marie09535

Dear all,

I've been ill 19 years (since age 25) and was dignosed with ME/CFS many years ago. I am now 44 and living in Sweden.

Last summer I had a turn for the worse and together with everything else I could no longer stand for more than a few minutes at a time (weakness and pain). I decided to apply for disability (again). After a scare with a(nother) terrible GP (it's all in your head), I ended up two months ago with a young doctor who immediately said she thoght I had PMR and prescribed prednisone.

It has been a journey since. When I first read about PMR nothing fitted (I'm way too young, have (and have had) many more symptoms, lack some of the others) but as I have read more and followed this forum I have become more and more convinced it's really vasculitis: PMR and probably GCA/TA too. Suddenly everything is coming together. It's just such a relief to finally have been properly diagnosed with something that has a treatment.

Speaking of... I did not react to 30 mg/day but with 40 mg after three weeks it was like lifting a veil. Suddenly after almost 20 years I woke one morning rested. And I could think! I would get up in the morning and just LIVE a whole day. It was amazing for two weeks. And then it passed, and now I'm as bad as usual. I'm still better in some ways (mentally) and falling asleep lots faster, but I am ever so exhaused.

I have an appointment with a specialist next week, but I am so scared. I know it's irrational, but the fear that I will be met with contempt or mistrust is just overwhelming. I am so scared they will say they can't or won't help me. That my GP is wrong (as I do not fit the typical criteria) and that further investigation is useless and that they won't prescribe medication that could help.

It would be too much after having "tasted" health after so many years. It would be so cruel. People have assured me that if properly diagnosed and treated I will be completely symptom free. It's almost too good to be true.

I am sorry for this rant, but I really do need all the support I can get and I've seen how wonderful you are with each other. The waiting and anxiety is drivning me crazy.

Thank you for this group, it has helped me lots already.

Love,

Marie

 

4 likes, 16 replies

16 Replies

Next
  • tina-uk_cwall
    tina-uk_cwall marie09535

    Posted

    Dear Marie, you poor darling. Many on this site know exactly where you are coming from and following clear diagnosis are still treated with contempt by their gp's, the very people that we should all be forging a trusting relationship with. 

    Luckily for me I have not had any trubble with my GP or rheumatologist since diagnosis but I don't know what I would do if I did because no clear diagnosis or to be diagnosed with a condition that has a mind of its own is very frightening. 

    Your diagnosis, was it based on any blood test Results? If yes and it was based on raised CRP/ESR levels, and if whilst on prednisone these 2 aspects of a further blood test have reduced then that helps with diagnosis. However, you say that things are as bad as they used to be, in what way? The pain and stiffness?

    presently you are filled with much anxiety and stress and whatever illness or condition you have wrong, anxiety and stress is not good for you. You must approach your pending appointment with more positively, yes there are lots of clinicians out there that don't believe any of their patients! You mustn't believe that you'll end up with one of those. They all have a duty to look after us, and that includes testing us and coming up with a diagnosis, no matter how long it takes.

    you know what Marie, maybe you don't have PMR but that decision should be reached by proper medical investigations and then in turn rule out or in other medical conditions. 

    I develoed this condition aged 52 and although I did suffer from all the established symtoms I am still classed as atypical as I am on the young side to have such a condition.

    please calm yourself right down - easier said than done - because this worrying is doing you no good. Please let us know how you get on at the consultants. Regards, christina 

    • marie09535
      marie09535 tina-uk_cwall

      Posted

      Dear Christina,

      Thank you for your kind words and for sharing some of your experience.

      Yes, I had slightly elevated CRP/ESR (almost all these years) that normalized immediatly with prednisone. I forgot that to be one criteria for PMR. *Deep breath trying to calm down* smile

      My new GP is fantastic, it's the first one I can talk properly with and ask questions, so I am in good hands really. I'm just in such a state.

      Feeling as usual: exhaused, no energy, flulike symptoms, sore throat, sinus congestion, achy and head achy, muscle weakness, pins and needles, shortness of breath, claudication in limbs and jaws, worse after physical activity (washing up, handwriting, standing for more than some minutes at a time, very short walks).

      Yes, I will write next week to let you know how it goes.

      Thank you so much!

      Marie

    • tina-uk_cwall
      tina-uk_cwall marie09535

      Posted

      Marie, remember that some of the above symptoms if very recent may not be symptoms of a new or undiagnosed condition, they may infact be side effects of the prednisone, for which there are many, do look them up. Exercise for you may be very difficult what with PMR along side the me but exercise is actually very good for pmr sufferers, so whenever you feel up to it a gentle stroll is good enough. Keep positive, hope to hear from you re an update next week, regards, christina 
    • linda17563
      linda17563 marie09535

      Posted

      Hello fellow confused sufferer!  I have had ME/fibro for 25 years, when symptoms changed, I was diagnosed 3 years ago with PMR.  Steroids (15mg) changed my life....but not for long...when I got down to 7mg, the blurred vision pain ect kicked in big time!  sent to eye specialist, and was put on 20mg at xmas gone.  My symptoms are now the same as yours, and I`m housebound! (down to 15mg now)  I go to the Rheumy next Tuesday, I know it will be blood tests, and wait again for results!  but I will not leave the room until she tells me what she suspects!  I think the steroids are doing it, but who knows....I will post on here what happens, because several of us are suffering and confused!  Good Luck,  Linda...confused.
    • marie09535
      marie09535 linda17563

      Posted

      Thanks Linda, good to hear about someone else's experience. Let me know how it goes. I'll be VERY interested. I'll be thinking of you Tuesday.

      /Marie

    • linda17563
      linda17563 marie09535

      Posted

      Thank You...I`m in fighting mood with what little energy I have! 
    • linda17563
      linda17563 margaret22251

      Posted

      Thank You Margaret..

      .re: our husbands not understanding....mine always says, stop thinking about it, and it might go away!!errrrrr

    • margaret22251
      margaret22251 linda17563

      Posted

      snap but today when i had more blood tests done and he was told how serious gca was i could see it shook him up, and we had a small talk about it things might be looking up. 
  • margaret22251
    margaret22251 marie09535

    Posted

    Marie, you have come to the right forum, dont apologies for being scared we all have been there, i have had some really bad moments but these ladies ladies have kept me sane!, someone will be along to help soon, sorry i cant as i am a newbie like yourself, lots of hugs for youbiggrin king regards Margaret
  • EileenH
    EileenH marie09535

    Posted

    I think you need have fewer worries about the specialist because your GP is taking you seriously. There are other forms of vasculitis that would cause similar symptoms and which might respond to higher doses of pred but not the typical 15-20mg of PMR - which I suspect is your case. For other vasculitides though they use other immunosuppressive drugs.

    Do I understand you are still taking 40mg or did your doctor just give you a short course? If he just gave you a short courseof pred then even if it were just PMR it would return as soon as you stopped the pred. You may have needed more because it has been ignored for so long and there is some damage from the vasculitis. I had to wait 5 years for a diagnosis and I found it myself but I was never as bad as you obviously have been.

    I am very sure there are a lot of people out there just like you - saddled with a diagnosis of ME/CFS that really have a vasculitis of some sort. anyway - good luck and don't go away now you have found us and I, at least, am looking forward to learning more about a young and atypical presentation and what it could be.

    • marie09535
      marie09535 EileenH

      Posted

      Eileen, thank you for your helpful words.

      Yes, I'm still on 40 mgs, but I do believe it's slightly low for me. First I thought it was just a temporal worsening due to my period as I have read many flare around that time in the cycle, but now I'm not so sure. I'm a bit tempted to increase the dose, but of couse I won't as it's stupid and my rheumy appointment is just a week away.

      Yes, I'm pretty sure we are many with ME/CFS diagnoses who actually have some sort of vasculitis or another. I came across an American researcher who investigated the link between shingles and GCA and became intrerested as I had shingles three years before falling ill. And I had a male friend with very severe ME/CFS who had also had shingles some years before onset. When I'm not too emotional, it's really very interesting researching! smile

      /Marie

  • margaret22251
    margaret22251 marie09535

    Posted

    Oh Marie i am so sorry for you, its not good having doctors who do not understand, i cannot help but, other people on this will be able to help. 

    you can rant all you like to us as we all have been there, take care, kind regards Margaret

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.