Bone density in bedridden patient

[Cheesus]

As I am completely bedridden - and have been for a little over two years - I am seriously concerned about my bone density.

Other than eating well and taking a vitamin D supplement, I do shift about in bed quite a lot - sometimes sitting up for periods or bending my knees up to try and put weight through my legs. I also have to move once a day onto the commode by the side of my bed, which will necessarily change how the weight is distributed through my body.

Am I likely to be at serious risk of osteoporosis? I am a man, age 26, which I hope will work in my favour. In my previous life I loved to ski and throw myself down mountain bike trails, but I am seriously concerned that I will be prohibited from doing that in a hypothetical future when I no longer have ME because my bones will be too weak.

I have also come across conflicting information regarding regaining lost bone density. Some sources suggest you can reverse bone loss to an extent, whereas others say that once it is gone it is gone. Does anyone have any insight into this?

 

[Gingergrrl]

I do not know the answer but am now following your thread! I have never been bed-bound but I have used a wheelchair since Oct 2014. I also take Cortef which can weaken bones (but at present I have three doctors in agreement that it is too dangerous for me to try to taper it so I have to continue it for now).

My new ob-gyn (I know this part does not apply to you as a male LOL) very much wanted me to have a bone density scan but I declined b/c I am pursuing so many other aspects of treatment right now. And even if the scan showed something bad, he said there is nothing I can really do about it. I eat dairy and many foods with calcium and also supplement Vit D daily. Am curious to read other replies to this thread.

And I wish you the best @Cheesus that your situation will improve .

 

[Crux]

I've had osteoporosis for , many years now.

I've tried all the usual supplements : vitamin D, calcium, magnesium, zinc, vitamin K2, strontium,boron, others, I forget.

They are all very important.

Even though I haven't had a dexa scan in 5 yrs., I learned of my continued 'soft bones' by my oral surgeon. My dental implants hadn't integrated with the bone.

Most recently, however, bone growth was shown when he opened the tissue to complete the process. Even though the bone wasn't quite strong enough to support a cap, it had grown , noticeably.

The difference is that I've been taking Copper supplements. A major sign of copper deficiency is osteoporosis. I've known about this for a long time, but, I thought I was getting enough in the diet.

Here's an excellent overview :
http://lpi.oregonstate.edu/mic/minerals/copper

 

[alex3619]

There are at least some cases of patients who are bed bound for many years, I think, from memory, around 7+. They have developed low bone density. Bone stress is the way to address this, the bones remodel to cope with stresses, increasing their bone strength. This is one of several big concerns I have about the most sick patients. The others being how fragile their health is, any big challenge could make them worse, as well as how limited their diet and therefore nutrition tends to be.

Supine load bearing stresses might help. This is an area where we really need an expert to advise us, and individual patients need such experts to be available to them. Yet finding an expert who is also knowledgeable in ME is going to be a real challenge.

The big reason I am concerned about bone density is that its very difficult to reverse. We are likely to have cures for ME in the foreseeable future, but its hard if we have to wait for cures for low bone density as well. So prevention is the only thing we have, and if we cannot tolerate being upright, or moving around at least a little, this is going to become a problem for some of us in the long run.

I think we could really use a discussion on what we can do to decrease the risk of loss of bone density.

 

[Cheesus]

This is exactly the kind of thing my local ME clinic should be advising me about, but obviously the idea that they know how to cope with severely sick people is somewhat fanciful. I think I am going to write to my local NHS foundation trust to highlight this significant oversight. If I weren't active online I simply wouldn't be aware of this risk.

We do fortunately have a rheumatologist to hand. What are your thoughts on bone density in severely disabled ME patients, @Jonathan Edwards? Should I be making suggestions to my GP?

 

[Mary]

@Cheesus - I worry about bone density too, though I am not bedbound, but am quite sedentary due to ME/CFS. The supplements @Crux mentions are all good - D2, magnesium, calcium, K2, strongium, boron and I guess zinc - I have not read about zinc and bone density. The copper angle is interesting too and I'm sure both are worth exploring.

I cracked a rib a year ago, when I pulled a weed - argghh! yeah, scary. I was pulling as hard as I could at an odd angle, and felt something pop. An x-ray later showed the crack. Anyways - I started to get serious about my bone density then and read a lot, and then some hopeful things I came across were reviews on Amazon for products like Jarrow Bone-Up - people were saying that their bone density improved after taking it - several refused the osteoporosis drugs the doctors had and treated themselves instead with good results.

I started going by my fingernail strength. My nails were very weak, so I started the Jarrow Bone-Up and unfortunately my nails got no stronger after several months. I then went to Rainbow Light Food Based-Calcium and seem to do better with it, my nails are getting stronger. I also have re-started taking betaine HCL with meals. My nails were stronger at one time and I finally thought perhaps I have not been absorbing minerals etc. properly due to low stomach acid. I had taken the betaine HCL for several years and thought I didn't need it any more. It seems I do.

In any event, I think there are things we can do nutritionally which can help a lot to increase bone density. As to physical exertion when it's impossible to do, I don't have any answers- and it would be very helpful to have input from someone knowledgeable on that score.

 

[Wolfiness]

Supine load bearing stresses might help. This is an area where we really need an expert to advise us, and individual patients need such experts to be available to them.

I have what I call passive fatiguability, i.e. that I can't bear much weight/pressure upon myself - it isn't a sensory/allodynia thing, it's a physical strain on muscles. One time even gravity was too much for me to lie on my side and I had to just lie flat feeling like a beached whale.

 

[Alvin2]

Vitamin K2 is very effective in increasing bone density, its been shown to prevent osteoporosis in the elderly (as well as arterial plaques). However i don't know if its been tested for someone bedridden, since the causes are different. If NASA ever tested it on astronauts that would probably be quite applicable to your situation

 

[CCC]

I've worried about this too, and my son is nowhere near as sick as you.

Although my son isn't bedridden, he grew a foot while bedroom bound and without gaining any weight. We've been on the K2 for ages (really - both of us) and he needs milk (I take calcium). At least if I can make sure the intake is adequate, then one thing is less bad.

I'd like to get him doing some weight bearing activity that isn't aerobic, but we first have to have him able to socialise.

 

[Sushi]

I have also come across conflicting information regarding regaining lost bone density. Some sources suggest you can reverse bone loss to an extent, whereas others say that once it is gone it is gone. Does anyone have any insight into this?

I have researched this quite a bit too and subscribe to a couple of good bone density blog sites. I take most of the supplements mentioned except copper. From what I have read it is very possible to increase bone density with a combination of supplements and weight bearing exercise. But, there is the rub, we can't do weight bearing exercise. If we come to a point of healing where we can do this, according to my reading, we should be able to regain significant amounts of bone density. Of course, that is a big if.

 

[Alvin2]

I have researched this quite a bit too and subscribe to a couple of good bone density blog sites. I take most of the supplements mentioned except copper. From what I have read it is very possible to increase bone density with a combination of supplements and weight bearing exercise. But, there is the rub, we can't do weight bearing exercise. If we come to a point of healing where we can do this, according to my reading, we should be able to regain significant amounts of bone density. Of course, that is a big if.

I believe bone density can be tested, perhaps its something worth doing?

 

[Sushi]

I believe bone density can be tested, perhaps its something worth doing?

Yes, it can be tested with a dexa scan, but it is pretty high radiation. After having a couple of them and realizing that I did have some bone loss, I decided to treat it in the best way I could and avoid further radiation. I am unwilling to take the prescription medications on offer and that is what the docs would want me to do if they saw more bone loss.

 

[Alvin2]

Yes, it can be tested with a dexa scan, but it is pretty high radiation. After having a couple of them and realizing that I did have some bone loss, I decided to treat it in the best way I could and avoid further radiation. I am unwilling to take the prescription medications on offer and that is what the docs would want me to do if they saw more bone loss.

I can understand that, bisphosphonates are pretty hardcore drugs which i would avoid as well
That said you can refuse any medication a doctor recommends, but radiation is something to typically avoid. I guess its a balancing act, deciding whether the risk is worth knowing your bone density status

 

[Jonathan Edwards]

This is exactly the kind of thing my local ME clinic should be advising me about, but obviously the idea that they know how to cope with severely sick people is somewhat fanciful. I think I am going to write to my local NHS foundation trust to highlight this significant oversight. If I weren't active online I simply wouldn't be aware of this risk.

We do fortunately have a rheumatologist to hand. What are your thoughts on bone density in severely disabled ME patients, @Jonathan Edwards? Should I be making suggestions to my GP?

All bed bound people should be assessed for bone density risk and advised on options for measurement and treatment. This is considered mandatory for all those with joint disease, including young people with juvenile arthritis. NHS services absolutely have a duty to provide assessment and management for all bed bound ME patients.

 

[user9876]

All bed bound people should be assessed for bone density risk and advised on options for measurement and treatment. This is considered mandatory for all those with joint disease, including young people with juvenile arthritis. NHS services absolutely have a duty to provide assessment and management for all bed bound ME patients.

At what level of activity does bone density become less of a concern. If someone were to spend most of there time between bed and sitting supported in a chair with very little walking and rarely leaving the house would that be a concern? (especially for teenagers)

 

[Jonathan Edwards]

At what level of activity does bone density become less of a concern. If someone were to spend most of there time between bed and sitting supported in a chair with very little walking and rarely leaving the house would that be a concern? (especially for teenagers)

I guess it is as long as a piece of string. Any level of inactivity is relevant. What is more difficult is to assess quite what the risk impact would be in a young person who may be capable of regaining bone mass if they remobilise, and whether it is justified to treat on the assumption that remobilisation is far from guaranteed etc. I do not pretend to know how to calculate the best policy but this is done for all other diseases with significant immobility so it should for ME/CFS.

 

[Cheesus]

Thank you all for your responses. They have been very helpful. I have been taking vitamin D, but overlooked many of the others.

I have come across a few interesting studies regarding various supplements and bone density. This review suggests vitamin K2 is moderately helpful in increasing bone density and reducing the risk of fracture.

A large, longitudinal, RCT of strontium in post-menopausal women found that it increased bone density in the long term. However the authors do note:

The distribution of strontium in bone and its greater absorption of x-rays compared with calcium may account for ∼50% of observed increases in BMD with strontium ranelate treatment (16).

http://onlinelibrary.wiley.com/doi/10.1002/art.23461/full

I do not know if that means the increasing in bone mineral density is superficial or genuine...? Having said that, the treatment group again had fewer fractures than the control group, and their 8 year follow-up showed continued increase in bone mineral density (ref). It also has a good safety profile.

I've also found some studies suggesting that magnesium can cause a significant increase in bone density, but to be honest the studies were very under-powered so I wouldn't want to draw any conclusions.

I'm going to try these various supplements in order to reduce my risk, but I will also absolutely speak with my GP and see what he can do for me regarding investigation and treatment.

 

[Cheesus]

@Jonathan Edwards

Do you know if bone density monitoring is recommend in the NICE guidelines? If not, it seems to me that it should be! They are up for review this year, so it might be a good time for us to lobby them to include appropriate recommendations regarding bone loss.

Perhaps this is something that @charles shepherd would have insight to as well?

 

[Cheesus]

@Jonathan Edwards

Do you know if bone density monitoring is recommend in the NICE guidelines? If not, it seems to me that it should be! They are up for review this year, so it might be a good time for us to lobby them to include appropriate recommendations regarding bone loss.

Perhaps this is something that @charles shepherd would have insight to as well?

To answer my own question, there is absolutely no mention of bone density in the NICE guidelines that I can find:

https://www.nice.org.uk/guidance/cg...general-management-strategies-after-diagnosis

 

[CCC]

There's a good K2 thread on here at http://forums.phoenixrising.me/index.php?threads/has-vitamin-k-2-mk-4-or-mk7-helped-you.15605/
http://forums.phoenixrising.me/index.php?threads/has-vitamin-k-2-mk-4-or-mk7-helped-you.15605/
I've just ordered a different K2 on the strength of that thread. (We were on Mk-7, but the new one is Mk-4)