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Newbie just looking to say hello :)

Posted , 10 users are following.

Cakegal
Cakegal

Hi all,

I'm so pleased to have found this forum!! I'm 39 and following a bout of flu (my first), at Christmas, I'm being referred by my GP to a rheumatologist for PMR.

I've had three blood tests over the past couple of months, which have shown increasing ESR and worsening anaemia. I feel extremely fatigued and tired most of the time and I have days where the soreness in my hips and neck are dreadful. It's worse at night, morning and evenings.

I also have problems with my hands - pain, stiffness and "sharp twangs" of pain and they sometimes go to sleep/numb at night when there is no pressure on them. I also get pains doing things like driving. Does anyone else have this?

Obviously I'm still to be formally diagnosed so I'm only going on my GP, but I'm still so happy to have found others who maybe in the same boat.

Thank you for any advice/comments smile

Kim

0 likes, 25 replies

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  • EileenH
    EileenH Cakegal

    Posted

    Hi Kim and welcome - how unusual, a young patient with a GP who thinks out of the box! However - don't be surprised if your rheumy tells you you are too young - you're not but it is unusual, usually I suspect because they don't look for it if you are under 50. If you don't seek you won't find...

    It could be a post-viral form, it does exist. Has your GP tried you on a moderate dose of pred to see what/if anything happens?

    But yes, I do recognise everything you describe and I hope that the rheumy is helpful when you do get to see him/her. You do sound to have something autoimmune but PMR is just one of a lot of things with these symptoms.

    Have you tried Bowen therapy? You might find it helps some of the hip/leg/back pain as there are some bits that sort of add-on to PMR which can be relieved and every little helps. 

    Where are you - -ish, not your house number!

    • Cakegal
      Cakegal EileenH

      Posted

      Hi Eileen,

      Thank you for your kind words and advice. Yes, indeed I'm aware I'm potentially on the young side to have it, so it will be interesting to see if the rheumatologist dismisses it or not. i very much appreciate you not dismissing me though. I tried another forum recently and was unceremoniously told I couldn't possibly have it! Much nicer welcome here I must say smile

      I'm in Buckingham (unsurprising in Buckinghamshire) smile my GP is terrific and I think I'm very lucky in that sense. He hasn't tried any meds yet. Possibly as we mentioned, my age that feels I should see a specialist to confirm.

      Warm wishes,

      Kim

    • EileenH
      EileenH Cakegal

      Posted

      Heavens - what forum was that? None of the 3 that I participate in I hope!
    • EileenH
      EileenH

      Posted

      Ooops - meant to say, the youngest patient in the medical literature was a 24 year old male - doesn't fit in any of the boxes very well does it...
    • Cakegal
      Cakegal EileenH

      Posted

      Ahh now I feel old - in all the best possible ways!! Thank you that's very interesting to know
    • RD_Swede
      RD_Swede Cakegal

      Posted

      In something Swedish sites that say you have to be over 65 but some mention 50. In Gothenburg there has been a survey with the result that 50 out of 100 000 have pmr and/or GCA. They also mention that fewer in Sweden have pmr or GCA than in other parts of the world so I wonder If it is true that you find it more on Scandinavians and countries visited by the vikings

      Ragnar (member. of Club Zero in the Northeast Forum)

    • EileenH
      EileenH Cakegal

      Posted

      There is a thread around here recently where someone had a bad experience there

      https://patient.info/forums/discuss/feeling-upset-496224

      so you aren't alone. I have to say - haven't investigated it myself despite being on FB. Haven't time to pounce on the rubbish there too twisted I already participate on 3 different ones.

      Stay here Kim - we're lovely redface  and all we care about is that you have PMR-type problems. It doesn't matter if it somehting else - if we have found a way around a problem, we'll share it with you.

      Here's some reading for you:

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    • Cakegal
      Cakegal EileenH

      Posted

      Thank you Eileen. I feel so much better knowing it wasn't just me!! Everyone is so kind here, I'm feeling very comfy already 😉 I'll take a look at the reading material. Thank you again and warmest wishes
    • linda17563
      linda17563 Cakegal

      Posted

      Eileen as usual is right, I got PMR for my 60th birthday, my rhemy said you`re young to have it....what rubbish, I knew of someone who was 42 with it, she recognised it because her grandmother had suffered from it.....good luck, and hope your rheumy is better than mine has ever been...if not, just deal with the good doctor you sound like you have...smile
  • MrsO-UK_Surrey
    MrsO-UK_Surrey Cakegal

    Posted

    Hello and welcome.  What a breath of fresh air to hear that there are doctors around who suspect PMR in a young patient - it's difficult enough sometimes to find one even in an older patient....at least that was my experience!

    ​Although naturally I hope that you don't have PMR, if you do then you have come to the right place.....and then you can educate those on facebook!  

    I also showed signs of anaemia prior to PMR/GCA diagnosis, but anaemia can present with other autoimmune, inflammatory conditions, too - did your GP carry out a blood test for rheumatoid arthritis, for example?  And it's amazing how many people say that their PMR followed a bout of flu.

    ​Whatever it is, I do hope your appointment with the rheumatologist comes through quickly and that s/he is able to give you a definitive diagnosis.  If not, there is a wonderful rheumatoligst not too far away from you, and certainly well worth the journey, at St Peter's Hospital in Chertsey, Surrey.  Meanwhile, do try and give yourself plenty of TLC and check out anti-inflammatory foods to help, including plenty of oily fish, and avoid pro-inflammatory foods such as preserved meats etc.  Good luck.     

    • Cakegal
      Cakegal MrsO-UK_Surrey

      Posted

      Thank you for such a kind and thoughtful reply.

      My doctor hasn't tested me for RA, as far as I'm aware - he certainly chaser mentioned it. My grandmother had severe RA so I will certainly mention it to the rheumatologist, as I presume they will ask my family history.

      I very much appreciate the reference to anti-inflammatory foods. I have been wondering if it actually has any meaningful effect, but we are planning a bit of an eating makeover anyway

    • lee63556
      lee63556 Cakegal

      Posted

      Yes I do believed food has a great deal to do with inflammation if doesn't agree to some. Is something like food intolerate and most doctors don't agree to it. Like my previous GP, until I shown him my results and my bad cough has gone just in two weeks after following the diet given by the lab. 
    • Anhaga
      Anhaga Cakegal

      Posted

      Because one of the side effects of pred that I developed rather quickly is elevated blood sugar (can even become diabetic) I've been severely limiting refined carbs and have virtually eliminated all wheat.  Interestingly, if I do have more than, say, half a gluten-free scone (baked by my lovely daughter-in-law) I find myself burping and sometimes getting cramps.  I NEVER had this sort of problem with wheat before, but I think it is telling me something.  I am still eating that occasional mouthful or two of bread or breadlike substances, just to keep my gut microbiome aware that they need to keep on digesting it for me.  Don't seem to have the same problem with rice or barley, although I still don't eat much of either.  So, who knows?  After all these years of thinking my wheat-avoiding friends were being silly, now I think they must have been on to something after all!
    • EileenH
      EileenH Anhaga

      Posted

      Gluten-free or non-gluten-free scone Anhaga?
    • Anhaga
      Anhaga EileenH

      Posted

      She uses flour that is gluten-free.  They are kind of flat and pancake-looking because of course without the gluten they don't rise properly, but they taste good and have a pleasing texture.  Now I'm getting hungry......
    • LayneTX
      LayneTX Anhaga

      Posted

      I recently purchased some Almond flour. I'm not a baker so I don't know how to use it for baking, but I used it to make a sauce! It worked! Tasted so good. I dislike chicken, so I force it down, but made this sauce to cover it.

      butter, almond milk, almond flour, cilantro herb and even some minced ginger! I've made it twice now. Yum, yum... 

    • Anhaga
      Anhaga LayneTX

      Posted

      I watched a tv show maybe a year ago where they were looking at alternatives to modern agriculture.  One of the things claimed was that nut trees are far more efficient at producing nourishment for us.  So they were saying farmers should grow nuts instead of grains.
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