Partial hip replacement and ME

[Sallyagerharris]

Unfortunately on 3 January I fell whilst at home alone, took 90 mins to turn on floor and inch to phone to call my husband. Anyway I’d badly broken my hip at the age of 57 (ME since 2006, stroke 55). Apart from lack of pain relief the care was amazing and 10 days later I was home and now having physio at home and onto crutches.

Im learning by error by limits as slightly overdoing it on Sunday and then physio Monday and sleeping since then. I realise that the normal 3 months recovery is 6 for me. As I tripped and fell whilst heading for the printer to pick up my 2023 list of stupid things not to do, I’m taking this as an opportunity to try and recover a bit with ME having had several cumulative bad years after I took over my brothers life when he was seriously sick for 8 months which destroyed me.

So I’m slowing my daily hip exercises down. But would love to know any other experience of breaks / hip replacements and recovery. I use a powerchair outside of the home and on bad days inside. So I’m not in great shape. The fall has reinforced that my life of dog walking possibly 3 days a week can survive but not walks more my dog by river and swimming or just playing with her in one field and no charging off across rough terrain flat out in my 4x4 all terrain powerchair. I’d done this 2 weeks before well covered but in pouring rain and wind. We raced around and it was freedom and exhilarating but I need to be even more careful. So I hold those memories close.

OK all advice most welcome and thank you.

Sally

 

[Hufsamor]

I have no advice, but would just say I’m sorry
I’m very sorry for your broken hip, and

everything’s kind of double difficult for one with me/cfs.

 

[Jyoti]

I’m very sorry for your broken hip, and

everything’s kind of double difficult for one with me/cfs.

Readily echo this! I am sorry to hear. It sounds like literally one thing after another.

I’m taking this as an opportunity to try and recover a bit with ME having had several cumulative bad years after I took over my brothers life when he was seriously sick for 8 months which destroyed me.

I have not broken a hip but a few years ago I did get run into by a charging dog who smashed my tibia. I was put on bedrest--no weight bearing--for two to three months. It was tricky in some ways, but as a result, my ME improved rather dramatically. Of course I got use of my leg back and starting doing too much rather soon after, but the time of enforced rest was really a blessing.

I hope that in some (similar) strange way it will be that for you as well.

 

[lenora]

Hello.....I'm a 75 yr. old woman with severe osteoporosis. I'll be taken off my med, Fosamax, for a "vacation" in April. I've been on it since I was probably 40.....osteoporosis has been a long battle for me. It seems that something is always broken.

Last January, I fell....just fell while standing, and ended up multiple pelvic fractures and of course, new vertebrae that were injured. My back is one big mess. I have no idea what to do or take when I'm on this vacation from Fosamax. I know these drugs are all supposed to be dangerous, but osteoporosis definitely ranks up there. Besides, I feel that Fosamax has stopped really bad breaks from occurring.

Insofar as having a hip replacement (or partial) @Sallyagerharris, I don't think I'd be inclined to do it. My pelvic fractures had me bedridden for a year, I still have considerable pain and I look at things this way: They can always be worse and it has happened to me. Yes, I feel the hip will break naturally on its own and I don't know what my answer about surgery will be. I'm tired of pain, fatigue...oh, the usual. It has been over 35 yrs. that I've been ill and yes, I'm old now and these things are expected. Still no real answers, though. My Dr. wants me to have an injection of Prolia every 6 mos. instead of the Fosamax. I told her, politely, "No" as I've had two friends who have been on it and both had severe pain and the usual features of FM (which I also have). So, I don't feel that's the answer and won't be heading in that direction.

If anyone has ideas for both of us, please let us know. Yours, Lenora

 

[Sallyagerharris]

I’m glad to say I seem to be through the worst. Bed / recliner enforced rest is defo helping my ME!!!! The hip and leg are healing nicely. I have a bone scan tomorrow so I can compare the results to my last one a few years ago now. It’ll be interesting to see what they recommend for the osteoporosi!!! I’m assuming it is but have had blood bests to check for other causes so also waiting for the results of that

 

[lenora]

Hi....I'm just coming off years of Fosamax and have declined to be given Prolia (injection for 6 mos. at a time).

I would be very interested in what you're going to be told; a lot of us would be, I'm sure.

Very glad that you've made such wonderful progress. I'm sure you'll continue to do so. Yours, Lenora

 

[Sallyagerharris]

Hi Leonora,

the nurse practitioner I chatted to has said it’s likely to be zoledronate. 50% reviews fab 50% terrifying!!! Apparently you have it intravenously once a year in hospital and think she said every 3 years.

 

[lenora]

Thanks @Sallyagerharris. This is a complicated matter and they all seem to come with the same side-effect. My mouth is OK (apart from general wear, tear & age) but I don't want a broken femur.

I went back on Fosamax until April, at which time it won't be filled, so my inclination is to wait and go back on it whenever the internist feels I should. Parents must go insane when their children are ill and they have to make all of the decisions.

I'm so happy that you're doing much better. A little R & R, huh? Yours, Lenora

 

[Sallyagerharris]

Just an update. I had my bone scan yesterday which revealed severe osteoporosi!! I just laughed as I had a stroke at 55, my hip this year …. Plus super ME. I use a powerchair as cannot stand of walk much. Anyway I’ll now be researching all the treatments. Sort of hoping they find another cause for the osteo from the blood tests that could be fixed although the bones from what I’ve read so far are at no repair stage!! I’ll look forward to my 58th birthday tomorrow. Big hugs everyone

 

[Sallyagerharris]

My bone scan score 3.6 which is just so so rubbish as 4.0 is the highest reading they give. Bit upset as another life blow …

 

[lenora]

Hi Sally.....All I can say that is as we age more and more things "get in the way." I look at this problem as one of them and will fight it off for as long as I can.

I also have two different types of epilepsy & other problems, and really having seizures was one of the best things that happened to me. Fortunately, they happened in the ER and two doctors saw them and now I'm on the right type of medication. Obviously the seizures had something to do with my prior broken bones. Still, it doesn't change the fact that osteoporosis is a big part of my life and my balance leaves a lot to be desired.

Do your very best. If you walk with a cane, then that's what you'll do. Unfortunately youth and perfection disappear with each year. Focus on the gains in life (which this illness does also deliver...and no, I'm not talking about those afflicted with the very worst situation). I've been up and down for more than 35 years...well, a lot longer than that. Life presents us with many challenges and we can only meet and adjust to them. I do wish you well....and Happy 58th....make it special. You'll never be 58 again. Yours, Lenora

 

[annaloecher]

Hi Leonora,

the nurse practitioner I chatted to has said it’s likely to be zoledronate. 50% reviews fab 50% terrifying!!! Apparently you have it intravenously once a year in hospital and think she said every 3 years.

hi sally,
did you receive that zoledronate infusion and did it impact your ME in any way?

 

[lenora]

Hello, @Sallyagerharris. Please don't think I was making light of your battle with osteoporosis. I'm not in the least as I was diagnosed at about age 40. That's when I went on fosamax and when menopause started to occur.

I'm of the opinion that this is also hormone related...perhaps not, but......! I do want to give CA, MG, and everything else that's supposed to be good for bones a try.

My pelvic fractures still cause pain, as well as the vertebrae. But no, I won't be going on any of the new (to me) drugs. No one knows how long this "vacation" will be.

It does make one scared of a fall and yes, our walking is rather scary at times. The pain is like background noise. I may have had osteo my entire life, as I have a history of braces and casts from as far back as I can remember. But who knew? Swimming is good exercise for our bones, that I know and will pass on to you.

Today is Xmas, leading to a new year. I hope 2024 holds better health and stronger bones for you. You may be surprised. And those comments about whether something is right for you.....you can never, ever base a decision on them because each of us is so different. Sorry, I wish I could say otherwise, but that's the conclusion I finally came to. Sit by a fire and forget your troubles for today only. Yours, Lenora

 

[lenora]

My doctor wants me to have an infusion, but I really think I'd rather try the proper combo of supplements or meds for osteoporosis. I'm still working on it.....and there are so many aspects to consider. We'll see where it goes.

One thing's for sure....if I keep falling, something will end up broken and that's the last thing I can take....I've been bedridden with too many things already. Let me know how the new drug is, I'm interested. I hope you're doing better. Yours, Lenora

 

[Wayne]

I do want to give CA, MG, and everything else that's supposed to be good for bones a try.

Hi @lenora -- I ran across some information a few years back essentially saying the body can't use calcium for bone formation unless it has enough silica to do so. Since then, I've supplemented my diet with diatomaceous earth, which has a very high silica content. Apparently not too many foods have a high silica content. I seem to recall horsetail tea also has a lot of silica.

I've also read that bone broth combined with organic egg shells (can buy powder on Amazon) is excellent for bone formation. Interestingly, bone broth itself apparently doesn't have all that much calcium, but has the important co-factors that allow it to efficiently use calcium.

 

[Mary]

My bone scan score 3.6 which is just so so rubbish as 4.0 is the highest reading they give. Bit upset as another life blow …

@lenora , I'm tagging you here, you might find this interesting. @Sallyagerharris, I strongly recommend you do your own research on this and don't just rely on what your doctor says. There are people who rebuild bone, even with severe osteoporosis, using proper supplementation. The "side effects" of the fosamax type drugs can be quite severe, and in the long they can lead to more bones breaking.

Here's one product which gets overall quite good reviews - it's got a full complement of ingredients to support bone health, except for strontium: https://www.amazon.com/Doctors-Supp...004KQF9LA/ref=cm_cr_arp_d_product_top?ie=UTF8

Many years ago an orthomolecular doctor - very knowledgeable about nutrition and health - recommended I take strontium, along with calcium, D3, magnesium, etc. The strontium he recommended is strontium citrate, which is a natural forum of strontium without the negative effects of a synthetic form of strontium - strontium ranelate - created by a pharmaceutical company. It's the strontium ranelate which has a slew of potential bad effects. https://blog.algaecal.com/the-truth...um_Skews_DEXA_Results_Too_Much_To_Be_Reliable

I haven't been able to exercise for 25 years due to ME/CFS so I use bioidentical hormones as well - to help prevent hormone-related osteoporosis and to also help with sleep. The huge Women's Health Initiative study done around 2001 which showed some link between HRT and cancer was done using synthetic hormones - synthetic progesterone which was very likely the culprit. Also it used "estrogen" made from pregnant horses' urine. No one thought to use the identical hormones that our bodies produce.

So there's a lot of misinformation out there about hormone therapy, and about rebuilding bone, etc. We have to educate ourselves and hopefully our doctors.

I recently had a DEXA scan and my results were pretty good, a little osteopenia in one hip and the rest was good. I am going to add strontium to my mix - I dropped it awhile ago, as I take soooooo many supplements!

 

[Wayne]

Many years ago an orthomolecular doctor - very knowledgeable about nutrition and health - recommended I take strontium, along with calcium, D3, magnesium, etc. The strontium he recommended is strontium citrate,

Good information, great post @Mary.

The "side effects" of the fosamax type drugs can be quite severe, and in the long they can lead to more bones breaking.

For those who may not know, Fosamax prevents bones from breaking down. That might seem like a good thing (I guess according to conventional medicine), but not a good thing for the body.

The breaking down of bone to be replaced by new bone is a healthy, natural process, which Fosamax prevents the body from doing. So in a relatively short time after a person starts taking Fosamax, the bones become very brittle and start breaking extremely easily.

Drugs are not the solution for osteoporosis, except perhaps on a very short term basis. Targeted nutrition has the best chance of stopping the loss of bones in the long run.

@lenora, it appears you're looking closely at nutrition and supplements to address things. I wish you all the best in finding the right combination of things that will do just that!

 

[lenora]

Thanks for the information and good wishes. You're all so helpful and I thank you.

Well, I've been off Fosamax for probably 5 months or more now. I do have the mixture of CA, MG, D3 & the rest of the group, so we'll see how it goes. Strontium is also included, I believe, but I would have to look before confirming it.

Years ago, when all of this began, I tried natural supplements but then Fosamax was just new on the scene. No one knew about the break in the femur, so it was assumed to be best for me. My bones were in terrible condition for my age at that time. First you have osteopenia, but then if a break occurs it's automatically osteoporosis. I would rather take natural substances, trust me. I'm hoping this new mix will work out.

I did refuse to have an infusion of some other drug for bones (Prolia????). I didn't like the idea of it being done once/year. I've had friends who had terrible pain and had to wait for it to basically wear off before they were better. No, I wasn't prepared to go that route and like I said, fingers crossed, the natural alternative is best. I'm a big believer in that first and foremost, but sometimes there's just no choice. I'm rather glad to have the opportunity to try vitamins, minerals, etc., again....because so much more is know about bone formation than all those years ago.

If you find more info on bones, please let me know....and others on PR, of course. Most appreciated. Yours, Lenora

 

[Wayne]

If you find more info on bones, please let me know....

Hi @lenora -- I was doing some research today on PEMF therapy, and came across a number of references to it be useful for bone regeneration. Apparently NASA incorporated it into their health protocols for astronauts specifically to help prevent bone loss decades ago.

I actually purchased a PEMF mat, and used it for the first time today. I'm thinking at this time that it might be somewhat of a gamechanger for me, as it allowed me to go into a deep, restful mode. It's something my body has struggled with since being exposed to the anti-nausea medication Promethazine five years ago, which is known to cause akathisia (constant state of feeling unsettled).

Anyway, thought you might find this information interesting. Here's a link to a video where he briefly discusses using PEMF for bone loss. He covers it in about a minute or so.

Real Foot Doctor Explains The Pulsed Electromagnetic Field Generator Sports Injury Recovery Tool

 

[lenora]

Thanks @Wayne. We all look out for each other....I'm glad you remembered my question.

I'll come back and will definitely read the post.....as it's something I have no choice but to stay on top of. As you know, so many things can become confusing that's why it's nice to have people from PR respond. Good or bad, their answers are helpful. Take care & rest well. Yours, Lenora