Needed: ME/CFS friendly Vibration or drug therapy for Osteoporosis (ME & FM patient)

[Danesh]

I have had ME/CFS since the late 90s. I also now have fibromyalgia. A DXA scan found that at barely 58 I have Osteoporosis. My condition with ME/CFS is now severe, I am housebound and can not do exercise any more.. A new dr has a treatment protocol to try, which requires we prevent more bone loss first. I already take the minerals I should, higher D3, some K2, more magnesium, less calcium for heart health. Dr says try a Whole Body vibration plate. Several ME/CFS forum members said a couple of years ago they can only tolerate 1-2 minutes on a WBV plate. Another person said they are able to use the expensive Marodyne Liv MD, as it is very gentle. I am finding some Fibro patients have severe pain as a side effect of bisphosphonate drugs (Boniva, Foxamax, etc.)
I need help, to know what to do next. Anyone else with ME/CFS, who are too frail to exercise, have you found a vibration therapy that you can tolerate, and for how long per session? Also anyone with Fibromyalgia have any success with a bisphosphonate or a natural supplement that is proven to build Bone Density, or at least stop the bone loss? Thank you so much!!

 

[Lisa L.]

Hi Danesh, I doubt you’ll even see this since you posted in 2017 but responding anyway! I am also struggling with severe ME/CFS and Fibro and severe osteoporosis. I found out about the osteoporosis because of severe abrupt onset back pain which an MRI showed was caused by compression fractures-that’s when the vertebrae fracture and collapse. I had never even heard of them. I have 8 compression fractures and have had 2 neurosurgical procedures to stabilize the vertebrae in past 5 months alone. My orthopaedist told me my future in a very kind but realistic way - that I would continue having them and my spine (the thoracic part) would consequently continue to curve inwards exerting so much pressure on my lungs, organs and I guess nerves that I will no longer be able to walk or talk. It’s already started. So it’s a rather dire situation. I’ve started physical therapy (ug, so difficult) to help strengthen muscles and hopefully combat some of the above.

I have been sick with me/cfs for 32 years. It turned progressive around 16 years ago and since then I’ve only gotten worse and worse. I’ve always been such an active person and maintained swimming, walking and yoga in my life until they started causing crashes no matter how little or gently I did them. A huge loss. I think our forced sedentary lifestyle has a lot to do with the osteoporosis.

All my doctors want me on a biophosphate but everything I read about them and people’s experience with having me/cfs and taking them was not good. All but one woman got sicker and despite warnings from their doctors, chose not to take the osteoporosis drugs. Consequently i refuse to even try them. I’m so sick now I cannot afford getting any sicker. I’ll be permanently bedbound. So my choices are awful- more pain and crippled spine or more illness. In a way the choice was easy, so to speak. I won’t risk getting sicker. Most of my doctors cannot understand why I won’t even try them. They cannot begin to understand how awful this illness is, such that I’ll risk more compression fractures. I get so frustrated that some see my unwillingness as a reflection of depression which really upsets me. Here we go again with refusing to see how devastating this illness is.

I did research alternatives and found one called AlgaeCal which is taken with Strontium and they guarantee their product will build bone growth in 6 months I think, or money back. According to them, only one person so far has gotten their money back. My partner and I talked long and hard about all this and we decided to go with the AlgaeCal. Their guarantee reflects a high level of confidence in their product. It’s difficult for me to take because of when you take it, frequency, with or without food and two hours away from any meds (which I take continuously throughout day!) and they’re big capsules and I have trouble swallowing. But I’ve started and at least am doing something. I hope you get this. I hope perhaps you’ve already found something that works for you. It’s so hard and painful isn’t it that we can no longer be active? I crave to move my body- to swim, walk long and hard and flow through my long yoga routine but I no longer can.

 

[Danesh]

Hi Lisa. I don't come here often, lucky I happened on to read a blog post. I'm sorry for all your suffering as well. My 33 year old daughter and I are both very ill, housebound. I did find a good vibrations platform, the Marodyne LIV (Low Intensity Vibration) Germany, the UK and now in the USA. But I could not tolerate even the low level. I have major sensory overload, to vibration of a car even.) Made for those with osteoporosis too, not cheap, but I had to send it back. Great customer service.
I take vitamin K2, 100 mcg, I think. I also am on bio identical hormone therapy. Both of those help with our bones. A doc tried me on a high dose of K2 (MK4?) only one brand makes it, 15 mg per pill, and you take three a day.... but like others who tried it with ME, it flattened me. Even one pill. In Japan, this therapy is very successful in post menopausal women, preventing osteoporosis, or halting it. To bad can't do it. So, I do the 100 mcg per night and hope it makes a little difference.
I take more magnesium too, malate. And, I try not to fall. haha. I too get worse every year, so I only do a tiny bit of on the floor yoga, easy, but something! I also greatly miss being outdoors!!! to hike, bike, be with people.
I also refuse to take the biphosphonates (SP?) due to the bad news from other ME and FM patients.
God bless you, and thank you for sharing so much of your experience with me! I wish you the best.
Denise

 

[Tammy7]

58 also. I take Orgono G5 Siliplant (silica). It is one of the best supplements for osteoporosis.

 

[Danesh]

58 also. I take Orgono G5 Siliplant (silica). It is one of the best supplements for osteoporosis.

Thanks! I knew about silica, but hadn't done anything about it, except diet.