My 6 Year M.E Aniversary.
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Have you been tested for mercury poisoning!
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Glad you're aware of it. I am getting great relief from an ordinary cranial osteopath, not a Perrin technique practitioner, so maybe just finding a local cranial osteopath might still have a benefit?
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Hi Kaazoom, You are talking to the queen of overdoing it here, so I know how you feel. Whenever I feel slightly okay, I go and lower the dose of my steroids, or go swimming, or walk too far and I'm back in flare territory. I know what you mean about Breakspear being too expensive, it really isn't cheap, but I've come too far down this road not to try and get back to health. I'm going for it! ;-) I hope you have a good Christmas! Take care.
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@kaazoom I know, Paul. You all have it a LOT worse over there. :( Of course, even here the "recommended" treatment is antidepressants, CBT, and GET. ;) I am just lucky to have a doc. that seems to understand a little more than that about this disease. CFS needs to be dropped anyway. If one meets the new criteria, they have M.E., not the watered-down name the CDC gave it in order to belittle those suffering. Grrrrr. Yep, I'm still on the fight about that, lol. Always good to see you!
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It's great that you were able to continue your ESA benefits, and I am SO glad that you had a little holiday, even though it's worn you out a bit. It's so nice to see you though, as I've been wondering how you were. Yes, stress is a huge enemy of M.E., as it can be a trigger. Our bodies cannot process stress, good or bad, the way normal bodies can. I can relate to the pain as well, but thankfully have been put on Percocet now, which is very helpful. I didn't find Tramadol very helpful. :(
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Kaazoom, Something I forgot to mention, I've also been seeing a cranial osteopath lately and it's making such a difference to both my joint pain and energy. I was improving from the ostepathy before I even started the Paleo diet. Please look at this video to see what I'm talking about - google perrin technique forme-cfs - to find it. This osteopath treats ME specifically. I can't tell you how much difference this is making to me. Osteopath appts are not wildly expensive either.
ruthheasman 3 months ago
@ruthheasman I have looked into the Perrin technique an bought his book. The nearest practitioner is too far away from where I live. Any good would be undone by the journey.
kaazoom 3 months ago
Regarding the pitiful clinic visit...I am so sorry. I don't know why they refuse to take the 2011 Canadian International Criteria Consensus Review, which was approved July 15, 2011, and the UK was present, into more consideration? Good grief. ALL govts. seem to want to overlook the fact that this is a very serious DISEASE, and NOT about fatigue. It's about being ill! I hope you and yours have a very Merry Christmas and a Happy New Year. Hugs, Teri
tslu1970 3 months ago
@tslu1970 I knew that there wouldn't be much on offer in the way of help as you know there is no cure only management. But the team consisted of physiotherapists, occupational therapist and a psychologist. No doctor was on their team, and no medical advice was available. But the fact they use 2 hour sessions in groups of about 10 people suggests no understanding of M.E. and it's only a token service. But as you are aware - in the UK CFS is just about being tired all the time. :0(
kaazoom 3 months ago
hey Kaazoom, good to see you! I know about false starts. I'm doing well on a Paleolithic diet prescribed to me by Dr Y at Breakspear at the moment. Breakspear specialise in treating ME and fibromyalgia so might be worth a look if you can afford private care. Keep posting videos. I always watch!
ruthheasman 3 months ago
@ruthheasman Thanks Ruth. Breakspear is just too expensive for me. I know Dr Myhill's treatment uses a similar diet. But she says you must get the fundamentals of rest and acing right to make any difference. That is where I am no good, I know I shouldn't do it, but I still keep pushing myself. I am my own worse enermy. I have signed up for the pacing course on cfidsselfhelp org website, I'm hoping it will help.
kaazoom 3 months ago