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PMR diagnosed at 45, IBS and MTHFR gene

Posted , 5 users are following.

paula1969
paula1969

Hi everyone... Just been diagnosed with PMR and GCA as well as Fibromyalgia. I'd been doing a highly repetitive manual job and the physio initially thought I had cervical spinal stenosis with myeleopathy, irritated be the hunched over and repetitive behaviour while looking down. A very astute company doctor (not my usual doctor) ordered blood tests then did a very extensive set of hands on tests, which was confirmed later on by the rheumatologist. PMR is riddled throughout my fathers family also.

However, I know for a fact that I have suffered from these symptoms before, and just thought I was perhaps a bit 'soft' and would push myself through them with great pain and suffering. Maybe I wore myself out?! My own (ex) doctor used to roll her eyes when she saw me coming, complaining of the same aches, pains, depression and fatigue... Yet would only offer counselling.

I've had irritable bowel and asthma for several years, but in this process have also found out I have Haemachromatosis and a metabolic lipoid disorder that are both hereditary through a defect in the MTHFR gene which has also come through my fathers side... Many offspring in the last two generations have autism features and aspergers which is a result of the MTHFR deletion in the DNA ... The gene that releases the enzyme that breaks down metals in the body, hence the storing of iron etc in the organs and creating toxicity in the blood, especially mercury etc in vaccinations. I read in a long list of symptoms from severe to mild, that PMR and other autoimmune diseases as well as food sensitivities are caused by it. I totally feel like I've been hit with the faulty gene stick!

My fathers side are from Ireland and my mothers from Shetland, and I am a sixth generation New Zealander. I'm told it is a 'white' mans disease of those from Northern European descent.

I've been on 30mg prednisone for two days now, and apart from having a raging cold, I'm feeling almost sprightly.

I look forward to chatting with you all and learning more about self-care, which I've been lacking in my busy family and work lifestyle. (I also live in and care for my elderly father)

Warm thoughts to you all.

Paula :-)

1 like, 7 replies

7 Replies

  • Xxxxxtttttttttt
    Xxxxxtttttttttt paula1969

    Posted

    Hi Paula, I am still awaiting diagnosis and I know that feeling of seeing doctors rolling their eyes! I would really love to transfer my pain to them just for a day so they know how bad it is. I wondered about PMR after putting all of my symptoms in and it came up i went to GP yesterday. I asked for prednisolone as I am so desperate for some pain relief. My pelvis and shoulders are crippling me. I cant sit for long, oramorph isnt helping much nor the other pain killers. She was very reluctant to prescribe and I practically had to beg her as the only times I have had relief from this pelvic pain in the last year or so has been when an orthopaedic specialist injected steroids (prednisolone) into my hip. It worked for 3 weeks each time and I felt wonderful! My depression and night sweats are getting so much worse too and I really dont believe its all fibromyalgia. I have been suffering with various problems with my pelvis since an injury 22 years ago when I was 24. Lately though I have had a weird headache just on one side of my head that is worrying me and my eyes go blurry. She has orescribed only 5mg but says i cant take them till after my blood test on Tuesday. Shaz
    • mrs_k
      mrs_k Xxxxxtttttttttt

      Posted

      Your GP should have looked up on the NHS site for PMR and/or GCA there is no excuse and there is no excuse for not sending an immediate blood test by bike.  My GP did it for me.

      Go to the British Society of Rheumatologists and look for the Guidelines on the Diagnosis and Treatment of GCA.  Download them and print them off.   Then go straight to the nearest A&E.   Tell them your symptoms, particularly the side headache and the blurry eyes.

      Do it now, if it is GCA it is imperative you do not delay, fo you lose your vision either partial or total, it is gone, no getting it back.

      If you are wrong, no harm done. So do it now, not tomorrow, now.

    • Xxxxxtttttttttt
      Xxxxxtttttttttt mrs_k

      Posted

      She did look it up and said as I am under 50 (46) I would need to be referred to a rheumatologist and have the positive blood tests first, but as I more or less begged and went on about the fact that the steroid injection worked remarkably, she compromised with a 5mg prescription which I cant start till after my blood test. I tried to get that earlier but it costs them too much for me to just go to the hospital so I had to wait for one at our clinic. She said as long as it was within two weeks. I asked receptionist for an urgent one but she rang thru to gp who said again, within two weeks, so tues was earliest I could get. I am concerned 5 mg may not be enough too, as I have noticed 15mg is usual to start
  • Judygirl
    Judygirl paula1969

    Posted

    Dear Paula:

    Absolutely ignore any rolling of eyes, etc., etc.  I asked my

    ophthalmologist a question and he said "I am a specialist

    and I can't answer your question" - there's more to all these

    phenomena than meets the eye and we must try to help

    ourselves.  If something is awry with our adrenal system

    why don't we deal with it (if it's possible) rather than covering

    up with drugs.  Anyone looking into prevention rather than

    cure?   All the best.

  • mrs_k
    mrs_k paula1969

    Posted

    Paula,

    Sorry to hear that you now have PMR on top of eveything else.

    You need to gain knowledge and as quickly as possible.

    On this page on the right hand side there is a yellow square, scroll down and look for Polymyalgia Rheumatica, click on it and it will take you to the main thread.

    There are three charities, all with websites, and some actual support groups. 

    You can find out where the support groups are on those sites.

     

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