STOP! Don't do this if you have osteoporosis

Posted by isabelle7 @isabelle7, Jul 7 8:35pm

I am starting this thread hoping people will post things they've done that they have regretted, for one reason or another, when suffering from osteoporosis.

I'm going to start the conversation with a list of things we've learned already, and we are newbies!

1. Lift objects heavier than recommended by your physician (for my husband, that means nothing heavier than 5 pounds right now, with 3 fractures).

2. Don't bend at the waist! He got a fracture bending to empty the dishwasher.

3. Be cautious when driving - avoid rough roads, bumps, and go very slow over speed bumps.

4. We had planned to go on a boating tour (on a commercial fishing boat) on the ocean. After seeing a boat rocking and bouncing over choppy water we decided not to go.

5. Do not slouch when sitting in a chair or couch. If you're going to rest for any period of time on a couch elevate your legs (per our physical therapist).

6. Do not try any exercises until you have cleared it with your doctor, especially before your doctor confirms your fracture is stable.)

Please add to the discussion. I think this could be useful to people, especially people new to this.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@pami

Forteo builds bone. Prolia works by stopping bone loss. It is important to build the bone first.

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@pami

Thanks!! I'm glad we're starting with Forteo then.

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@windyshores

@annie1 I have been told that a dose under 5mg for a relatively short period of time is fine. A dose pack usually starts at 60mg. Are you sure of the dose prescribed?

I have had severe osteoporosis as well and have shrunk as much as you! Has your doctor ever prescribed a bone builder like Tymlos, Forteo or Evenity? Do you have an endocrinologist?

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@windyshores

This time I'm talking about myself and not my husband's osteoporosis. I do have a question for you. I have spinal stenosis, not bad enough for surgery, not getting any numbness or tingling or major issues, just some arm pain from time to time that has been manageable. My doctor prescribed five days of 20 mg prednisone and so far my chiropractor, PT and acupuncturist have all said that would be safe to do for the five days. My husband developed osteoporosis from taking high doses of prednisone for a year which is a completely different thing. Still I get a little freaked out about taking it. I'm sure it would be OK. They're all saying it can tame down the inflammation enough for the body to reset and it sometimes will work for an extended period of time. So I"m thinking about doing it.

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@isabelle7

@windyshores

This time I'm talking about myself and not my husband's osteoporosis. I do have a question for you. I have spinal stenosis, not bad enough for surgery, not getting any numbness or tingling or major issues, just some arm pain from time to time that has been manageable. My doctor prescribed five days of 20 mg prednisone and so far my chiropractor, PT and acupuncturist have all said that would be safe to do for the five days. My husband developed osteoporosis from taking high doses of prednisone for a year which is a completely different thing. Still I get a little freaked out about taking it. I'm sure it would be OK. They're all saying it can tame down the inflammation enough for the body to reset and it sometimes will work for an extended period of time. So I"m thinking about doing it.

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Yes @isabelle7 according to what my doctors have said, that is fine. I also have stenosis (cervical and lumbar) and when I have an episode of symptoms, steroids are suggested so the conversation comes up with my neuro. Unfortunately my heart cannot tolerate even 4 mg!

I have also been told by rheumy that under 5mg is safe for a longer period of time in terms of bones.

I will say that in my experience, the stenosis pain (probably myelopathy) comes up frequently so not sure taking steroids frequently is a good idea. I have learned to release shoulder muscles I take baclofen to relax muscles and use Ben Gay or BioFreeze on my neck. My PT does massage. If really bad I take 1/4 lowest dose Klonopin overnight. Tai Chi helps. Lidoacaine injections did not help.

So my point is that steroids are kind of a band aid approach that may help in the short term but since it is a chronic problem, we need long term strategies. There are pain management programs that can be helpful as well. Do you think stress about your husband and/or doing certain things for him, might be aggravating your own problem>

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@windyshores

Yes @isabelle7 according to what my doctors have said, that is fine. I also have stenosis (cervical and lumbar) and when I have an episode of symptoms, steroids are suggested so the conversation comes up with my neuro. Unfortunately my heart cannot tolerate even 4 mg!

I have also been told by rheumy that under 5mg is safe for a longer period of time in terms of bones.

I will say that in my experience, the stenosis pain (probably myelopathy) comes up frequently so not sure taking steroids frequently is a good idea. I have learned to release shoulder muscles I take baclofen to relax muscles and use Ben Gay or BioFreeze on my neck. My PT does massage. If really bad I take 1/4 lowest dose Klonopin overnight. Tai Chi helps. Lidoacaine injections did not help.

So my point is that steroids are kind of a band aid approach that may help in the short term but since it is a chronic problem, we need long term strategies. There are pain management programs that can be helpful as well. Do you think stress about your husband and/or doing certain things for him, might be aggravating your own problem>

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@windyshores

I definitely think the stress about my husband and also doing so much more around the house, the yard and with the childcare contributed to this getting a bit worse. However, it's not to the point where I'm getting any numbness or tingling, no loss of leg function etc. Just some annoying aches and pains sometimes in different areas of my arms. Totally manageable so far with Advil (try not to take it too much, sometimes need to do a five-day stent and that can help a lot.) Sometimes I'll take Naproxen but rarely. I've been told the short dose of prednisone could give enough relief to do kind of a reset if that makes any sense at all.

I went to acupuncture yesterday for the first time in years. My husband is going and is getting relief so I decided to try it while I have the opportunity (less kids in the summer, easier to leave during naptime). I will say it did give me some relief from pressure I was having in my neck area. I tried a new pillow a couple weeks ago. It's supposed to be a good neck pillow. However after using it for a little over a week I stopped because I had developed new pains I'd never had before. I've gone back to my old pillow and I'm still not where I was before I started using it but it's getting better.

I agree that the steroids are a bandaid. I would do it this one time just to get relief and see if it helps with a kind of "reset" as the doctor mentioned.

I love Bio Freeze! The other night I went to bed and my upper arm was hurting so I used BioFreeze and within minutes the pain went away. It works great for me, I just have to get the professional grade which I can find now on Amazon. Before I could only get it at my chiro's office.

I've been told chiropractic is probably not a good idea with cervical stenosis. Any thoughts on this?

I've never done Tai Chi. How did you learn how to do it and do you go to classes or do it at home? I've heard people say Yoga is also good. Any experience with that?

My acupuncturist said massage would be really helpful so I might try to schedule that. My husband rubs my back at night before I go to sleep but it's not the same as a full massage.

How do you release shoulder muscles? I'm terrible when it comes to exercise. I would do them if someone would teach me so I don't make matters worse. My schedule prohibits me from physically going to see a PT but I can see mine virtually. Not quite the same but it's something.

I'm not sure if I showed you the results of my recent cervical neck x-ray. I shared it with someone else on Mayo Clinic Connect who has had surgery for cervical stenosis. Her situation was way worse sounding than mine with numbness, losing feeling in hands and legs, loss of bladder control, things like that. She is highly recommending I get the MRI and consider surgery based on the results of my x-rays. But my physical therapist, acupuncturist and chiropractor all said they don't think I need the MRI at this point (two of them saw the results of the x-ray). Thoughts?

No acute fracture.
Vertebral body heights are maintained.
Intervertebral disc heights are normal.
There is worsening anterior spurring spanning C5 and C6.
There is similar uncovertebral joint hypertrophy.
There is worsening, now severe narrowing of the right neuroforamina at C6-C7 secondary to progressing degenerative changes. The remaining levels on the right side have also shown worsening neuroforaminal stenosis.
The left side is stable, with narrowing noted at C6 to C7.
Prevertebral soft tissues are unremarkable.

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@isabelle7

@windyshores

I definitely think the stress about my husband and also doing so much more around the house, the yard and with the childcare contributed to this getting a bit worse. However, it's not to the point where I'm getting any numbness or tingling, no loss of leg function etc. Just some annoying aches and pains sometimes in different areas of my arms. Totally manageable so far with Advil (try not to take it too much, sometimes need to do a five-day stent and that can help a lot.) Sometimes I'll take Naproxen but rarely. I've been told the short dose of prednisone could give enough relief to do kind of a reset if that makes any sense at all.

I went to acupuncture yesterday for the first time in years. My husband is going and is getting relief so I decided to try it while I have the opportunity (less kids in the summer, easier to leave during naptime). I will say it did give me some relief from pressure I was having in my neck area. I tried a new pillow a couple weeks ago. It's supposed to be a good neck pillow. However after using it for a little over a week I stopped because I had developed new pains I'd never had before. I've gone back to my old pillow and I'm still not where I was before I started using it but it's getting better.

I agree that the steroids are a bandaid. I would do it this one time just to get relief and see if it helps with a kind of "reset" as the doctor mentioned.

I love Bio Freeze! The other night I went to bed and my upper arm was hurting so I used BioFreeze and within minutes the pain went away. It works great for me, I just have to get the professional grade which I can find now on Amazon. Before I could only get it at my chiro's office.

I've been told chiropractic is probably not a good idea with cervical stenosis. Any thoughts on this?

I've never done Tai Chi. How did you learn how to do it and do you go to classes or do it at home? I've heard people say Yoga is also good. Any experience with that?

My acupuncturist said massage would be really helpful so I might try to schedule that. My husband rubs my back at night before I go to sleep but it's not the same as a full massage.

How do you release shoulder muscles? I'm terrible when it comes to exercise. I would do them if someone would teach me so I don't make matters worse. My schedule prohibits me from physically going to see a PT but I can see mine virtually. Not quite the same but it's something.

I'm not sure if I showed you the results of my recent cervical neck x-ray. I shared it with someone else on Mayo Clinic Connect who has had surgery for cervical stenosis. Her situation was way worse sounding than mine with numbness, losing feeling in hands and legs, loss of bladder control, things like that. She is highly recommending I get the MRI and consider surgery based on the results of my x-rays. But my physical therapist, acupuncturist and chiropractor all said they don't think I need the MRI at this point (two of them saw the results of the x-ray). Thoughts?

No acute fracture.
Vertebral body heights are maintained.
Intervertebral disc heights are normal.
There is worsening anterior spurring spanning C5 and C6.
There is similar uncovertebral joint hypertrophy.
There is worsening, now severe narrowing of the right neuroforamina at C6-C7 secondary to progressing degenerative changes. The remaining levels on the right side have also shown worsening neuroforaminal stenosis.
The left side is stable, with narrowing noted at C6 to C7.
Prevertebral soft tissues are unremarkable.

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So you have bone spurs and the space around your spinal cord is narrowed. Interesting that you don't have tingling, hand or foot pain. Is it one arm? My left side is much worse.

Often my left arm is a lot shorter than the right. I push a spot in my shoulder blade and it releases.

I do get tingling if I make a mistake and cannot bend my head back at all. I have a note from my neuro that says I cannot extend my neck. I gave it to breast surgeons and to dentist.

I do not go near yoga, or chiropractors. For massage, only sitting and only with someone who knows what they are doing!

There was a time when I could not shake hands or step off a curb. It has improved. I take tai chi classes that help stretch my neck and align my body.

The neuro NP did a lidocaine shot in my occipital nerve (botton of left side of scalp, top of neck) and I had extreme pain and tightness down neck, shoulder, left side of back and around to ribs. Neuro tested strength and I could not push his hand at all. He was alarmed and wanted imaging and thought surgery was needed. I asked to wait a bit and it went away in a week or two.

Like your husband, you and I cannot make mistakes! I have the cervical and lumbar stenosis but not as bad as yours. And 7 spinal fractures- none since 2021 and none on Tymlos!

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@windyshores

So you have bone spurs and the space around your spinal cord is narrowed. Interesting that you don't have tingling, hand or foot pain. Is it one arm? My left side is much worse.

Often my left arm is a lot shorter than the right. I push a spot in my shoulder blade and it releases.

I do get tingling if I make a mistake and cannot bend my head back at all. I have a note from my neuro that says I cannot extend my neck. I gave it to breast surgeons and to dentist.

I do not go near yoga, or chiropractors. For massage, only sitting and only with someone who knows what they are doing!

There was a time when I could not shake hands or step off a curb. It has improved. I take tai chi classes that help stretch my neck and align my body.

The neuro NP did a lidocaine shot in my occipital nerve (botton of left side of scalp, top of neck) and I had extreme pain and tightness down neck, shoulder, left side of back and around to ribs. Neuro tested strength and I could not push his hand at all. He was alarmed and wanted imaging and thought surgery was needed. I asked to wait a bit and it went away in a week or two.

Like your husband, you and I cannot make mistakes! I have the cervical and lumbar stenosis but not as bad as yours. And 7 spinal fractures- none since 2021 and none on Tymlos!

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@windyshores

Very fortunately I don't have any of those symptoms. I do move a lot so I'm not sure if that helps or not. My physical therapist told me to look down to the ground and hold it there for 2 minutes a few times a day to help release pressure. I've been doing that and it seems OK.

Do you think I should go through with the MRI or just keep plugging along trying to keep the pain under control? I broke down and took the first of five 20 mg prednisone as prescribed by my doctor. We'll see if that helps anything.

Do you think it's safe for me to wait it out given what you've seen in my results? And I agree no more chiropractic. I did do acupuncture yesterday and it felt like I got some relief. I have to lie on my stomach to do that with my face in one of those rounded things. They put a pillow under the lower part of my legs which helped so I didn't have any back pain or issues when I got up. I did have a moment of lightheadedness but he said that many people get that after a treatment. It went away very quickly and I was fine.

So glad you haven't had any more fractures since 2021 and since Tymlos!!!!! Keep it up!!!

I can say aging is no fun but then again several of the people who commented on the cervical stenosis page were in their early 30s so I guess it can hit anyone at any time.

I'm 68 and want to be active for years to come. If it means I have to have surgery to make that happen then I will but it would be my very last choice and only if there was a risk I could have permanent nerve damage from this. I need to get a specialist to talk to. What kind of doctor is best for this? Would an endocrinologist be good? I love the one who is treating my husband. Or do I need an orthopedic doctor? I asked for an orthopedic surgeon (meaning to ask for a doctor, not surgeon) and my doc said we're not near that stage.

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@isabelle7

@windyshores

Very fortunately I don't have any of those symptoms. I do move a lot so I'm not sure if that helps or not. My physical therapist told me to look down to the ground and hold it there for 2 minutes a few times a day to help release pressure. I've been doing that and it seems OK.

Do you think I should go through with the MRI or just keep plugging along trying to keep the pain under control? I broke down and took the first of five 20 mg prednisone as prescribed by my doctor. We'll see if that helps anything.

Do you think it's safe for me to wait it out given what you've seen in my results? And I agree no more chiropractic. I did do acupuncture yesterday and it felt like I got some relief. I have to lie on my stomach to do that with my face in one of those rounded things. They put a pillow under the lower part of my legs which helped so I didn't have any back pain or issues when I got up. I did have a moment of lightheadedness but he said that many people get that after a treatment. It went away very quickly and I was fine.

So glad you haven't had any more fractures since 2021 and since Tymlos!!!!! Keep it up!!!

I can say aging is no fun but then again several of the people who commented on the cervical stenosis page were in their early 30s so I guess it can hit anyone at any time.

I'm 68 and want to be active for years to come. If it means I have to have surgery to make that happen then I will but it would be my very last choice and only if there was a risk I could have permanent nerve damage from this. I need to get a specialist to talk to. What kind of doctor is best for this? Would an endocrinologist be good? I love the one who is treating my husband. Or do I need an orthopedic doctor? I asked for an orthopedic surgeon (meaning to ask for a doctor, not surgeon) and my doc said we're not near that stage.

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I see a neurologist but there are spine specialists. I have also seen an orthopedist who is NOT a surgeon. The surgeons won't necessarily push surgery but they don't spend much time with you in my experience, once they know you aren't ready yet. PT's can be helpful in evaluating things too, in my experience.

I have no idea what you should do. You need a doctor you can feel good about. I don't know what others' experience is either: I haven't been on forums for spinal stenosis!

With osteoarthritis, our bones grow spurs. I have one in my hip, one in my neck and one in my foot, all on the left side. Lumbar spine too. But I don't have the extent of narrowing that you do. Very encouraging that you don't have numbness and tingling!

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@windyshores

I see a neurologist but there are spine specialists. I have also seen an orthopedist who is NOT a surgeon. The surgeons won't necessarily push surgery but they don't spend much time with you in my experience, once they know you aren't ready yet. PT's can be helpful in evaluating things too, in my experience.

I have no idea what you should do. You need a doctor you can feel good about. I don't know what others' experience is either: I haven't been on forums for spinal stenosis!

With osteoarthritis, our bones grow spurs. I have one in my hip, one in my neck and one in my foot, all on the left side. Lumbar spine too. But I don't have the extent of narrowing that you do. Very encouraging that you don't have numbness and tingling!

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@windyshores

Thanks for sharing who you've seen for your spine issues. And for explaining that orthopedists are not surgeons. I can see where a surgeon wouldn't have much desire to talk to someone not ready for surgery. I'd like to find someone who, if it's determined I don't need surgery, can help guide me in what I can do to improve the situation or at least stop or help stop it from getting worse. I've read people saying they've done things that helped them like physical therapy and other therapies.

I agree about PTs. I have a good one who will review xrays and will review the MRI results once I get it done. I have an appointment in mid-September. Soonest I could get in. By that time maybe I can find a doctor who I'm comfortable with who I can schedule an appointment with so I can be ready when the results come in.

I can't remember if you told me whether you've had an MRI.

I took the prednisone this morning and honestly don't feel much different. Maybe it takes a couple days to work? Or maybe it's not even the right thing for this. I also think that since I've known how serious this could be I've been so hyper focused on it that maybe the tension from that is also causing me to have pain. I wasn't having this pain in my neck area until I tried a cervical pillow a couple weeks ago. I stopped using it a few days ago but the pain hasn't gone yet. So maddening.

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@isabelle7

@windyshores

Thanks for sharing who you've seen for your spine issues. And for explaining that orthopedists are not surgeons. I can see where a surgeon wouldn't have much desire to talk to someone not ready for surgery. I'd like to find someone who, if it's determined I don't need surgery, can help guide me in what I can do to improve the situation or at least stop or help stop it from getting worse. I've read people saying they've done things that helped them like physical therapy and other therapies.

I agree about PTs. I have a good one who will review xrays and will review the MRI results once I get it done. I have an appointment in mid-September. Soonest I could get in. By that time maybe I can find a doctor who I'm comfortable with who I can schedule an appointment with so I can be ready when the results come in.

I can't remember if you told me whether you've had an MRI.

I took the prednisone this morning and honestly don't feel much different. Maybe it takes a couple days to work? Or maybe it's not even the right thing for this. I also think that since I've known how serious this could be I've been so hyper focused on it that maybe the tension from that is also causing me to have pain. I wasn't having this pain in my neck area until I tried a cervical pillow a couple weeks ago. I stopped using it a few days ago but the pain hasn't gone yet. So maddening.

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Cervical pillow could be trouble. For me anything that presses on my neck causes symptoms! Yes I had an MRI at one point but don't bother anymore- until I need surgery.

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@windyshores

Cervical pillow could be trouble. For me anything that presses on my neck causes symptoms! Yes I had an MRI at one point but don't bother anymore- until I need surgery.

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@windyshores

How would you know if you’d need surgery?

What did you learn from your MRI? If you remember. Do you feel doctors try to avoid surgery as long as possible?

I still have mixed emotions about having one. I scheduled one for September so I have time to decide.

I’m learning that same lesson about having any pressure on my neck. My pillow works fine so I’ll stick with it.

One more thing. Someone said they had this surgery and they had a quick recovery and relief. I’m thinking if I get to the point where I need it this is what they would do??
https://healthy.kaiserpermanente.org/health-wellness/health-encyclopedia/he.cervical-laminectomy-before-your-surgery.abr9887

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