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Diagnoses, then not, now I'm starting again

Posted , 3 users are following.

Mrs_Brown
Mrs_Brown

I am so exicted and exilerated to have found you all as I am 44 and have been suffering for over 2 years if not more and feel lost and have suffered very low spells with no one to talk to. My husband doesn't understand and struggles to get why I'm not better. This weekend was the worst again for six months as christmas shopping was beckonning as was the housework, ironing, dog walking and everything else that just knocks me for six. I am like all of you one that battles on and keeps going but the concrete overcoat, arm and leg pain this weekend left me in tears at 5.00 on Sunday morning and all I needed was someone to talk to.

I do recognise many of the symptoms, the lack of ability to get a dianoses or help and especially the ability to know how much and when to do things as a full time working mum I know someone in their 60's and another in their 70's who have been so helpful about PMR, one of which has GSA with the PMR and one had the PMR but these are not people I can chat to - merely people I know of.Both were bad enough to go straight onto steriods which my doctor is avoiding and I understand why, but I need that balance and help.

My doctor didn't see me after my results when my ESR was slowly rising (seemingly using the 12 times table) and the tests stopped about 48, but my CRP was normal. The female doctor I did see dianosed PMR as the only possible options bearing in mind some information about me and my family - my brother has AS, my mother has MS and my dad is still suffering the site effects of Guillain Barre clearly showing both parents have auto immune issues.

I am lost, very lost today - I am at work and fighting on and always do - but because the pains have become worse over the last 2 months since over doing the housework without reprieve I am back at the doctors, my own doctor thinking it was a virus and now admitting due to some vision difficulties tests are starting again. ESR is only 30 which surprises me as pain is as bad as when it was 48.

People just don't understand it - I feel like i've run flat out into a brick wall and battle to get up as I know i must not sit and allow myself to stiffen. My best time is walking my two fantastic dogs whom I love.

I enjoy reading and hearing your tips and will now be a regular visitor to the site.

Thank you to you all - I have some hope and support to look forward to as I get ignored because of my age.

XX

0 likes, 4 replies

4 Replies

  • Lizzie_Ellen
    Lizzie_Ellen

    Posted

    Oh dear Mrs Brown. How I wish I could come and give you a hug. I know just how you feel and there will be lots of others saying the same thing, but when you're at your lowest you just want a hug from your nearest and dearest. Its also tough for them to understand how you feel because there's nothing to show for it is there? No spots or high temperature, no plaster caste or limp to evoke sympathy. Just that awful concrete overcoat that seems to engulf you. Be bold and insistent with your Doctor, you deserve the best treatment. I've been very lucky as my Doctor quickly referred me to the Rheumatology Consultant and she is just wonderful. You'll get lots of help, sympathy and understanding on this site. You sound as though you're doing a fantastic job. I found being a full time Mum hard enough when I was well and not working, so you deserve a big medal! I so wish there was something I could do to make you feel better but can only send my good wishes and good luck.

    Take care

    Lizzie Ellen

  • Mrs_G
    Mrs_G

    Posted

    I am sorry to hear of the problems you are having If you do have PMR you need to be getting lots of rest so you need a definitive diagnosis so people will learn to know what you need to hopefully get better

    When I had PMR for the 1st time ( now on 2nd bout ) my ESR was never ever that high I did have raised CRP but my Doctor was convinced by my symptoms that I had PMR She was unable to prescribe steroids because my blood tests werent bad enough so she said she would send me to a Rheumatologist I was 54 and in so much pain I had gone from riding my horse going to the Gym and exercise classes about 4 times a week and leading a very busy life to being unable to turn over in bed in the morning without crying withinjust a few months I in fact saw a Rheumatologist privately as there was a 3mth wait and he confirmed PMR but did 17 blood tests to rule out anything else !! I had 2 years on steroids and was fine Unfortunately it came back last year when I was 60 and hasnt responded quite as well to steroids and reductions have had to slow down a bit I do think because there arent visable symptons people dont believe you are ill !! Do persevere with your Doctor (mine is fabulous ) and good luck with getting steroids prescribed We do all curse the steroids but we all know we wouldnt have much of a life without them

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Hello Mrs Brown - I'm so sorry to hear of the length of time that you have been suffering such pain yet without a specific diagnosis which would not only help you in the long run but also would help those around you to perhaps appreciate and understand the difficulties you are experiencing.

    I'm in absolute awe of you managing to continue working all this time under such circumstances and Mrs G is so right to say that if you do, in fact, have PMR then you need to rest.

    I couldn't agree more with what Lizzie Ellen says about you being insistent with your GP....I am at present on an NHS Pain Management Programme and today we have been told that when we are dealing with our medics we should not be either passive or aggressive, but we should be assertive. This is, I feel, particularly important in your case as you mentioned that you are having visual problems and you should ask your GP if he considers that there is any chance you may have GCA which is linked to PMR but is far more serious in that your eyesight could be at risk and steroid treatment would be absolutely essential in this case. People who suffer from PMR but who are not prescribed steroid treatment are at a far greater risk of developing GCA than those people whose PMR is being treated, and I say this, unfortunately, from experience! If it is, in fact, untreated PMR that you have been suffering with for the last couple of years, then GCA is a definite possibility. Once you raise this possibility with your GP, he/she should arrange for you to see a Rheumatologist immediately. I'm sorry if this may sound alarmist but I hope it helps you to be insistent with your GP that you do not wish to risk your eyesight.

    It's great that you derive so much pleasure from walking your dogs and that at least must be a good stress reducer for you. So hang in there, and I hope you get a positive diagnosis and treatment soon.

    MrsO

  • pekabar
    pekabar

    Posted

    Hi Mrs Brown,

    I do not want to alarm you but, one of the symptoms of I had was eye problems before they diagnosed GCA. Other symptoms I had were pain in jaw when chewing, headache which was more like pain in the head for 11 days plus. I was started on 60mg steriods. If you are still having problems with your eyes and you develop a head pain over temples take yourself off to A&E.

    I have found this forum a great help, we all understand each other and can moan away as much as we like.

    Good luck

    pekabar

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