Fibromyalgia and A.F

Hi,

Let me firstly wish each and everyone of you Happiness and good Health for all of 2015...

I don't know where to begin with this post and will endeavor to make it informative without waffling on...

Many years ago in the early 80's following a very long period of illness that baffled the Physicians I was eventually diagnosed by a consultant in Rodney Street Liverpool as having Fibromyalgia as well as multiple food and environmental allergies consequently admitted to Seffton Hospital for several weeks under the consultants care...I was educated to a new way of "coping" with this painful condition whilst as some of you may know was not then recognized by many medical professionals ...and indeed even to the day many Physicians have not acquired the broad knowledge necessary for understanding of this disease....I was luckily to find an eminent Physician who fully understood and guided me for several years...

The years passed by I continued with my careers, managing the condition without very much medical intervention just the occasional Voltarol for pain relief...

As some of you will know I was diagnosed with PAF nearly three years ago followed by an PVI Ablation at Liverpool last August...

Looking back I feel I have had AF for many many years prior to being diagnosed mistaking all my numerous symptoms with Fibro...

I have these past few weeks had a really bad flare up which my GP prescribed Amitriptyline which has done nothing for the pain but has floored me so today just flushed it down the loo...My heart is beating irregularly at times but whether this is to do with the meds,AF or Fibro I don't know...

Does anyone of you kind people out there have both these conditions also and if so I would much appreciate if you could give me some ideas of pain management...

I more or less stick to a macrobiotic diet and prepare my food fresh daily without additives or preservatives this has been my stable diet for 30 yrs or so, but of course its been Christmas and I am only human and only so much willpower whilst I managed to stay Alcohol free my willpower did not stretch to the cakes and chocolate....

Have been referred to Walton Hospital for pain management just waiting for an appointment...

Well there we are I hope I ain't bored the pants of you...

Carol...

6 Replies

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  • Carol, I suffer with something very similar and have done for several years.

    Very painful stiff shoulders, neck, hips, wrists etc and have 'flare ups' which can last 2 -3 weeks or so and are really painful and difficult to tolerate. When it's been at it's worst it takes me a long time to get moving freely when I get out of bed in the morning or up from a chair. I can't just get up and walk off.

    I am undiagnosed. I have awful GPs, constantly changing, and have only been once recently to them about this, when I was having a very painful flare up just over a year ago.

    I asked the GP if it could be fibromyalgia and she said 'If it is, what do you want me to do about it?' !!I Even though I described the extent of my pain and discomfort, she actually said I should expect to have aches and pains now( not to this degree) and said all she could do was prescribe me Amitriptyline which might help. When she suggested them I asked if they would affect my heart rhythm as that was my biggest fear and her reply was to take them and see!

    When I got home I googled Amitriptyline and read that it should not to be taken if you have arrhythmia. Then I had a good cry. I didn't take a single one.

    I have a very good osteopath and went to see her the next day instead to see if she could help. She did some work on my neck and shoulders and it did help me.

    Over the past 10 years I have taken Vioxx and Vioxx acute, both now discontinued due to heart related side effects. Diclofenac is another one I've taken but wouldn't touch now. I won't take Ibuprofen either any more.

    I won't go to my GPs if I can help it, just my osteopath and the EP. I asked my EP not to refer me back to my GP so he hasn't(yet). Other GP practices in my area won't take you if you are already registered elsewhere as they are all full.

    I know I harp on about it but have you tried Magnesium supplements Carol?

    Research them. (If you do try Magnesium it should be a high dose.)

    I've found this:

    web.mit.edu/london/www/magn...

    I hope you get some relief soon.

    Patx

  • Hi Carol. I'm so sorry to hear you have this problem on top of A.F. I can't help in anyway but I am interested to hear about the problem.

    I have never suffered with muscle pains until recently when my dose of flecanide was increased. I now have a really painful and stiff neck and shoulders. X rays are normal. I know it could be a total coincidence but it definitely coincided with this increase in meds.

    I wondered if you were still on medication and whether that could cause a flare up. It's a long shot I know. I hope you feel a bit better soon. X

  • Hi Carol, I can only sympathesise as I know how painful Fibromyalgia is as my aunt suffers with it and it inhibits her. I think the meds question is very difficult as having the 2 conditions does restrict treatments for both because of the interactions.

    I have had stiff, very painful neck, shoulders and hips over the years but that has been caused by various accidents and spinal misalignment. I find that self management was the only thing that really helped and that means regular adjustments from my chiro, plenty of rest and relaxation alongside gentle exercise and movement and stretching and/or rollering (is a painful procedure where you use a foam roller which you lie on to massage the muscle). Whilst painful it really does ease the rigidity of the muscle. I have to do this daily and have regular massages from a very experienced team who specialise in spinal rehab.

    My personal opinion is that the medics have very little to offer when it comes to spinal and muscle and pain. All I know is that painkillers are not the answer! Have you been referred to a pain clinic? Have you tried any of the eclectic pulse machines? I know they have given some relief to my aunt.

    So shocked by the attitude of your GP.

  • Two suggestions : Physiotherapy (your crocodile - meant GP, don't know why that came out - could arrange that!) OR craniosacral therapy (my daughter is a practitioner, not advertising, just how I know about it) which is very gentle.

    When I had a frozen shoulder my GP prescribed Vioxx which made me breathless then wanted to bung a steroid injection in it. The physio and my daughter both diagnosed the problem as neck misalignment and the exercises and advice from the physio fixed the problem in two weeks. I know that is quite different to your trouble but worth a try as a coping activity I think? And both could help your AF instead of making it worse.

  • I also have FM. I think I'm quite lucky compared to others that have it, it seems to be under control a lot of the time.

    I visit a Physio in fact it was my physio that first suspected I had the problem. I was diagnosed by a rheumatologist about 16 years ago, he did all the 18 pressure points plus lots of blood tests and an MRI scan just to make sure and rule out any other problems.

    I have pain in my neck, shoulders, back and other occasional places, and when I go into muscle spasm I visit my Physio, who is excellent. If I have any thing but a gentle touch I will go into spasm, so cannot accept even a gentle massage.

    As we have kept animals for many, many years there is always a certain amount of physical work to do, which my Physio says, doesn't help.

  • Thank you all for your responses to my question...

    Since posting I have visited a colleague of mine who treated for misalignment of the Vagus Nerve which is the most important cranial nerve...He feels the Vagus nerve may have been compromised being the cause of many of my symptoms including the stiff neck and the vibrations throughout the body..and possibly the tachycardia...

    The vibrations have calmed at the moment but very sore after treatment will keep you all updated...Carol...

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