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CF and joint pain
Today’s post and questions will be quick, and I am asking for very practical reasons (I’m in the midst of a joint pain flare). Do you have joint pain related to CF or otherwise? Have you been diagnosed with CF related arthritis? What are your favorite tips and tricks for easing joint pain?
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7 Replies
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Reva has severe joint pain – hips and knees. We are considering whether to have her R hip replaced though the biggest reason she needs to use a wheelchair now is her shortness of breath – SOB not so much because of thick mucous clogging her lungs but because of Pulmonary Arterial Hypertension and Cardiomyopathy. But these =, we are sure, are a direct result of the faulty CFTR gene causing not just poor chloride excretion but high Chloride within the cells causing high cation levels (esp K & Ca) within the cells, ALL cells within the entire body, interfering with heart muscle function, Adrenal Gland Function, Parathyroid Gland function and more.
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Medication, rest and warmth helped me out so far.
Tylenol can do a little, but nsaids are better for joints. And within the nsaid group, dyclofenac works even better. 50 mg daily works fine for me. And one step higher to reduce inflammation (most cf joint pain is inflammatory caused) a hint of prednison can be a big help. I take 2.5 mg daily. These therapies can be sustained chronically without many side effects is my experience. I do this for 10 years already (prednisone) and 6 years (dyclofenac) and am very happy with the results. But you can use a scheme like this temporarily as well to fight an exacerbation of joint pain.
Keeping the joints warm day and night with appropriate clothing helps too. Cover the shoulder and pulses, ankles an knees especially for the skin is thin in those places and cold gets in easily there. And neck. Debbie also sufferd from stiff joints and muscles in those places. Since last year in winter she wears little woolen sleeves for the wrists and small turtlenecks for neck and shoulders. And a T shirt at night. This has reduced her complaints considerably. I had some shoulder pains last year that disappeared wearing a T shirt at night.
An infrared lamp can help as well.
Hope this is helpful Jenny.
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Almost forgot: keep the house warm as well. I know it’s fashionable these days to reduce CO2 emissions by lowering the house temperatures to 66F (19C), but for me this is too low. I think pwcf lose too much energy that way. So we heat up to about 71 F (21.5 C). Only not in the bedroom, for there you can keep warm with the blankets very well at night, it sleeps better. Only beware to not expose the skin while sleeping, you might wake up cold with a soar joint.
If you want to reduce the energy bill, it’s better to isolate the house and keep temperatures as constant as possible. Constantly cooling and re-heating costs a lot of energy.
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Ah yes, just thought of this: move to Tenerife! This Canary Island has the most equal and agreeable temperature of all places on Earth. It is room temperature all the year, and day and night. Many European people spend the winter there or indeed have emigrated. We spent one winter there in 2011/2012 and it was very soothing to the body. We spoke with many elderly people from Germany and the UK who moved there and they all told us how beneficial this was for their joint pains, that mostly disappeared completely. Proving that warmth and equal temperatures are an important factor in preventing or curing joint paints.
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And you might want to look into Omega 3 supplements to reduce inflammation. Wow, I am really scatterbrained this morning, sorry for all the bits and pieces of my answer. Perhaps I should take some more omega 3. Be careful with supplements that also contain omega 6, because our normal food contains already too much of that. There are even indications that omega 6 causes inflammation, although more research is needed.
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Omega 3 is useful in Arthritis, as is Ubiquinol – 300mg twice a day has been shown to improve heart function (Ubidearenone otherwise known as Co-enzyme Q10 is almost as good – is converted in the body to Ubiquinol). These also help in the metabolism of other cells including in Arthritis. Trials by Frank Rosenfeldt and others showed a reduction in mortality and morbidity in heart failure of 10-25% (published in 2011). But as usual some brands are better than others,
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Ubidearenone should read Ubidecarenone (lost its C)
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