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I found this website last night when I was desperately looking for someone to talk to who would not tell me I needed to just push through the pain or take more pills. I was diagnosed with fibromyalgia in 2009 along with chronic fatigue syndrome and in 2011 I got a defibrillator pacemaker installed to help control chronic genetic heart problem. That I CD made a tremendous difference in my life. For the first time in years I could actually walk up six steps and still be breathing when I got to the top. I was also diagnosed in the early 90s with a condition called sarcoidosis. This is an immune system disorder that they don't know why yet and there's no way to get rid of it. Mine manifest itself in my lungs with infections and fluid pretty much constantly. So I wasn't too surprised when in November 2016 my cardiologists sent me to an oncologist after some very strange blood work. Since that time I've changed doctors twice because I feel doctors need to tell their patients all the information they have available or at least where to find it. There's lots more health history but that gets old and really what I'm looking for is someone to communicate with who doesn't say well you don't look sick or did you know that your hair is falling out. Unfortunately I have been on the sprycel ever since last November and it seems that I am getting every side effect even the ones they say no one gets. My doctor told me in April that CML had no history or causing any kind of pain. Since then every person I have communicated with about CML has told me that muscle and joint pain was the number one or number 2 side effect they had suffered. That pain on top of the fibromyalgia pain has made it very difficult for me to get any kind of even pain relief. My pain management doctor is very sympathetic however there's only so much they are willing to try to do and if this treatment kept me relatively pain-free with the fibromyalgia when you add the pain from the CML it's over the top most of the time. I would love to hear from anyone who has ideas for some kind of alternate pain practices besides just more pills and also some exercises that would help fight the fatigue and the fact that I spend an awful lot of time in bed. Thank you for allowing me a place to vent and I hope to get some suggestions from some of you soon. Lady Doc.

Hello, and sorry to hear about your conditions. 

If you're based in the UK you can probably find a number of Alexander Technique teachers. AT can be described as a postural discipline, more or less; it teaches you how to use your body better.
Although I cannot testify directly on the subject, Alexander Technique has been found to be helpful for fibromyalgia and chronic fatigue syndrome. I am a practitioner of AT myself, but not for health related reasons; I am an amateur fiddler, and AT is employed widely among musicians.
Anyway, in a couple of instances I used AT exercises to overcome an athsma attack without meds, and it did work.

So, if you're based in UK or the area that is one thing you could try before adding other meds.

Good luck,

Davide

 

Thanks for answering my text so quickly. I have never heard of the Alexander Techniques but I will certainly try to do some research on that. Unfortunately I'm not in the UK I'm in the US 40 miles of country deep in the heart of South Carolina. We are far away from Dr, physical therapist, Hospital Etc. I've heard that physical therapy in water is easier and more efficient for people who have mobility issues but there's no place around here to make the practical. I'm not dealing very well with the CML the last 6 years have been one blow after another. I gave up driving 2 years ago because even though I have a license to Drive a great big truck I don't feel safe on the road between the pain meds and stiff neck it's just better not. I hope someone else will respond to my post just to have someone who knows what's going on with them to talk to. Again thanks for responding.

Hi, sorry you are having a hard time. I am also in the US but in a different part of the country (Rocky Mountain West), diagnosed just three months ago and waiting for my first PCR results. Soon after my diagnosis I learned of another woman with CML who lives fairly close by and we got together. We have met for breakfast a couple of times and that has been a great support for me, someone to talk to about symptoms and get pep talks. You might ask your doctor if anyone else in your area has it, and you could meet. (It wouldn't even need to be someone with CML, since it's a relatively rare disease; it could be someone with any chronic illness, I think.) I'm not having the kind of pain you describe, but like you, fatigue is a real problem. My best way of dealing with it so far is just accepting that this is part of the disease, or at least this stage of it, and trying to be good to myself and let my body call the shots -- if I'm tired I try to rest. Nutrition and sleep are so important to good health. You are right to try to find exercise. Mine is walking, which is easy to do in summer and can be done almost anywhere, but it will be harder in winter. There are also options like church and meditation, things like that which can help focus your mind on the positive, and let God or other greater power help you through it. God bless you and I hope you find relief. 

Hi and welcome,

As you are in the US you could try contacting the National CML Society - they advise on all aspects of CML for patients in the US and also on how to connect with others in your area.... see here for connections in South Carolina

I am sorry you are suffering such pain... for some myalgia is a side effect of TKI therapy and/or stress. You could ask your doctor for a short course of steroids to see if that helps counter this effect. Some have found that this helps by supporting the adrenal glands. Otherwise, complimentary therapy may be the way? 

Sandy

Hi,
Iam sorry for your suffering from pain. I was dx in nov 2016 and started on nilotinib .I had body pain for last 10weeks,but not showing any thing on x ray and scans.It started with left ankle pain,spread till neck and right side as well.Sometimes it used to pain more depending on which part I was using more or improperly. My doctors were not able to find the exact problem and gave me pain killers. I searched the net for similar symptoms and came across a Facebook page" Fibro Fit people "of lisa from atlanta geogia fighting fibromyalgia.This gave me a real insight to myalgia and how to cope with it.Before this it was really frustating & scary not knowing whats wrong with oneself.pls find the link below
http://www.living-smarter-with-fibromyalgia.com/
Hope this helps
May God bless you and all the best.

Hello,

i read your post with interest as back in the 1980 s I was eventually diagnosed and treated for pulmonary sarcoidosis.Initially I was mis-diagnosed and then mis-treated with 3000mg of strong antibiotics for 6 months- for tuberculosis - which did nothing to reduce the shadowing on the lungs.The next thought was go on a long holiday because it must be lung cancer ;this led to far too many CT scans of the lungs which I still believe contributed to the development of CML diagnosed in 2007.Eventually after taking a few slices of tissue from the lung it was confirmed as a sarcoid disorder and over a period of 3 years was placed on steroid tablets at the highest dose that could be tolerated in the form of predisolone.One has to go in at the highest dose that might be tolerated and then a gradual reduction over time is offered but the side effects might be life changing in terms of weight gain and fluid retention.In my case the shadowing cleared.You do not say how you were treated for your sarcoid condition but probably like me there must be some traces still in the body.Very few doctors understand sarcoid conditions and in UK we have only hospital with a specialist sarcoid unit-the Royal Brompton in Lindon

I am surprised that you are still on sprycel/dasatinib as the likelihood of pleural effusions as a side effect is 1 in 5 and apparently any previous pulmonary disorder is a further risk factor .I my case if there were any new mutations in CML  that might normally  be treated with dasatinib we would have a specific CT scan of the lungs to ascertain if any minor shadowing or sarcoid nodules were present before embarking on that tki..At present I am on high dose imatinib.

In my experience it is not unusual to experience severe musculo-skeletal pain as a side effect from tki s-I still have awful nights with badly disturbed sleep from severe  muscular cramps .In addition I have developed an auto immune condition of myositis which  for me presents itself as inflammation and wasting of the muscles in the right leg with periodic severe bone pains..Your post has prompted to speculate that an immune disorder such as sarcoidosis is not completely rid from the body and may well be contributing to an exaggeration of  our respective side effects from CML treatment..Have you had the CK -creatine kinase-blood test  as if this is elevated would indicate a particular reason for your inflammation.The top limit is 150 but mine runs at about 750-800 which is 5 times above normal and we just have to tolerate muscular inflammation .

I would in addition to the CK test ask whether your doctors have considered the use of steroid tablets or even short period intravenous steroid  injections;as well would an alternative tki be beneficial.Is the pulmonary sarcoidosis clear or is there still shadowing of the lung? As a final suggestion I have googled muscle inflammation and diet and you might find that a diet high in anti inflammatory foods might help you.Basically one has to avoid foods that contain preservatives ,chemicals  and even pesticides and to concentrate on natural foods such as nuts, advocado and  wild salmon (avoid farmed fish) and also avoid non organic meats and go for pasture reared  organic meat as opposed to stall fed animals.

I trust that my observations may be worth considering

With best wishes

John

Dear Lady

So very sorry to hear about your troubles. I cannot offer much in the way of medical advice, I have CML and some close friends have fibro and chronic pain and I cant imagine dealing with the two at once as well as all your other issues.

One year before my diagnosis I took a meditation course, it will not cure your pain but it will help you to better cope with that pain. It helped me and it could help you. All courses are 10 days residential and run on a donation only basis, here;s a centre in South Carolina http://www.patapa.dhamma.org/

Best wishes

eva