1. < Polymyalgia Rheumatica (PMR)

Bear with me on this long post if you can.

Posted by frenchfrank51 @frenchfrank51, Apr 3 1:05pm

Thanks in advance for anyone who might take time out of their day and spend more than a few minutes looking at what I've placed on this post. I hope I can explain it clearly and it may get a little complicated if I haven't. I'll do my best. I get it if you don't stick with post entirely. It's long.

Although my PMR diagnosis is only a few weeks old thanks to suddenly elevated CRP levels along with a variety of other blood markers which were all over the place and a sudden worsening of symptoms which had already been making me feel very ill, I've had some awful problems that actually started quite suddenly 13 years ago and have never really eased off. Often making me feel like I really do need to be in a hospital.

I've seen many specialists (the list is endless) who have never offered much in the way of diagnosis or they've given me differing diagnoses and then changed them.

My biggest problem from day one was a form of drop attack or syncope that would put me on the floor without much warning other than sometimes I would feel very rough and ill some time beforehand and feel like I was losing all my strength, coordination and mental clarity and other times without any warning at all. Sometimes I would recover as if nothing had just happened and say to myself "What the heck was that?" and carry on with my day. Other times I would be completely "out of it" for hours. Pain was never a symptom for many years but, obviously, it is nowadays. I've tried to explain to various doctors as best I can about these drop attacks for years without really succeeding. Then a couple of years ago YouTube recommend a video to my feed and I watched it just to kill a few moments. Part way through I saw two moments when people experienced the EXACT type of drop attack that I've been suffering from for years and still do to this day. Now I'm wondering if my recent diagnosis of PMR is possibly linked in any way. My PMR, of course, is just a few weeks old whereas the drop attacks are 13 years old!

So, now my question to people on the forum is "Have any of you, at any time, either before, during or since your PMR diagnosis had this type of drop attack? All the rhumatologists I've seen say it's nothing to do with any rhumatological disease but probably neurological. All the neurologists I've seen say it's not neurological. Everyone other than that tell me it's neurological. All I can say is that it's an awful feeling when it happens and it just seems to be getting worse.

Thanks for staying with me so far. If you're OK with it, I'll point you to two places in the video where the drop attacks I suffer from occur to the people I mentioned. You'll see from the title and content of the video that it's about knockouts in boxing matches. If you decide to continue it might be an idea to turn off the sound.

Much of it is what you'd expect but on two occasions something very different happens.

These examples show that these particular boxers who have been knocked down, once they're on the canvas, do everything in their power to get back up again but seem to have lost every ounce of strength in every part of their bodies. Try as they might, they can't even lift their heads off the canvas or use their limbs for several seconds because, it seems, their bodies are not responding to the mental will to get on their feet again. This is what happens to me every single day to some degree but often when I'm back on my feet and stable I return to normal as if nothing happened. And I mean completely normal! And, of course, no one has laid a glove on me.

I'll give you the times to look for in the video and hope you can locate the relevant clips.

The first is at 2.22 to 2.38 - boxer in white shorts. The second is at 7.50 to 8.02 - boxer in mauve shorts.

As I say, this can happen to me while I'm out in the garden working, cleaning the car, getting up from a chair even hanging up a picture on a wall at one time.

Is it musculo-skeletal that might have something to do with PMR or something wrong with the brain or even the spinal cord? Is it something anyone on the forum has ever experienced? I apologize for the long post and really appreciate anyone who has the patience to plough through it. The link is below. I hope I've explained everything well enough.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

rocksology | @rocksology | Apr 3 1:46pm

I’m so sorry this is happening to you. I have near syncope episodes where all of my strength leaves my body and I have to hold on or sit down. It lasts for a minute or two and I return to normal. The doctor (and a stress test) believe it is ischemic blood flow to my heart. I have an angiogram scheduled for next week. Have you and your doctor considered something like this?

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1 reply
frenchfrank51 | @frenchfrank51 | Apr 3 2:38pm
In reply to @rocksology "I’m so sorry this is happening to you. I have near syncope episodes where all of..." + (show)
@rocksology

I’m so sorry this is happening to you. I have near syncope episodes where all of my strength leaves my body and I have to hold on or sit down. It lasts for a minute or two and I return to normal. The doctor (and a stress test) believe it is ischemic blood flow to my heart. I have an angiogram scheduled for next week. Have you and your doctor considered something like this?

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Many thanks rocksology. I appreciate your response.

Yes, over the years I've had my heart checked out often with several stress tests, if you mean on a treadmill, and they've always been OK. Although on my last test in all four of my limbs and my torso the muscles or nerves, I don't know which, were trembling for about 30 minutes afterwards. I did have an angiogram when all this started happening and that was fine too.
When the drop attacks happen and I don't recover quickly, I struggle to walk properly (as if I'm drunk), can't talk properly and have no real idea of what I'm doing. On more than one occasion, my wife has had to lead me by the hand because I'm so out of it physically and mentally. And I'm like this for hours. Does this happen to you? I presume because you've replied that you might have PMR too. But you don't think that might have anything to do with your near syncope episodes? Thanks again.

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aussiedogmom | @aussiedogmom | Apr 4 7:17am

I had spells of vertigo years ago, accompanied by a fluctuating hearing loss. The hearing loss was substantial enough that I relied on TTY for the phone and closed captions for the TV. Initially diagnosed as Meniere's disease, further workup ruled that out and my eventual diagnosis was Autoimmune Inner Ear disorder. The docs agreed something was really wrong with my inner ear but they couldn't pinpoint it. As time passed, symptoms alleviated and I now function, at times, as person with a mild hearing loss. This was 25+ years ago and I doubt it has an relation to my PMR, except that folks with autoimmune disorders tend to be likely to have more than one. I have a small basket of them but all, except for PMR, cause me no real trouble.
You might consider an EMT consultation.

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2 replies
aussiedogmom | @aussiedogmom | Apr 4 7:17am
In reply to @aussiedogmom "I had spells of vertigo years ago, accompanied by a fluctuating hearing loss. The hearing loss..." + (show)
@aussiedogmom

I had spells of vertigo years ago, accompanied by a fluctuating hearing loss. The hearing loss was substantial enough that I relied on TTY for the phone and closed captions for the TV. Initially diagnosed as Meniere's disease, further workup ruled that out and my eventual diagnosis was Autoimmune Inner Ear disorder. The docs agreed something was really wrong with my inner ear but they couldn't pinpoint it. As time passed, symptoms alleviated and I now function, at times, as person with a mild hearing loss. This was 25+ years ago and I doubt it has an relation to my PMR, except that folks with autoimmune disorders tend to be likely to have more than one. I have a small basket of them but all, except for PMR, cause me no real trouble.
You might consider an EMT consultation.

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I meant an ENT consult. Jeeze autocorrect is such a nuisance.

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zaa | @zaa | Apr 4 8:15am
In reply to @aussiedogmom "I had spells of vertigo years ago, accompanied by a fluctuating hearing loss. The hearing loss..." + (show)
@aussiedogmom

I had spells of vertigo years ago, accompanied by a fluctuating hearing loss. The hearing loss was substantial enough that I relied on TTY for the phone and closed captions for the TV. Initially diagnosed as Meniere's disease, further workup ruled that out and my eventual diagnosis was Autoimmune Inner Ear disorder. The docs agreed something was really wrong with my inner ear but they couldn't pinpoint it. As time passed, symptoms alleviated and I now function, at times, as person with a mild hearing loss. This was 25+ years ago and I doubt it has an relation to my PMR, except that folks with autoimmune disorders tend to be likely to have more than one. I have a small basket of them but all, except for PMR, cause me no real trouble.
You might consider an EMT consultation.

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I also did have vertigo and still have dizziness, especially in my yoga classes. I suddenly went severely deaf in one ear and rely on my other ear that has hearing aid. It’s been hard because it cuts me out socially and cannot decipher the direction of sounds. I also got an episode of PMR years later but have now been recovered for the last 3 years. I’m wondering if it’s the norm for it to return? Do you still have PMR? I know there’s about 100 autoimmune diseases but haven’t heard of the inner ear disorder you commented about.

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1 reply
aussiedogmom | @aussiedogmom | Apr 4 8:57am
In reply to @zaa "I also did have vertigo and still have dizziness, especially in my yoga classes. I suddenly..." + (show)
@zaa

I also did have vertigo and still have dizziness, especially in my yoga classes. I suddenly went severely deaf in one ear and rely on my other ear that has hearing aid. It’s been hard because it cuts me out socially and cannot decipher the direction of sounds. I also got an episode of PMR years later but have now been recovered for the last 3 years. I’m wondering if it’s the norm for it to return? Do you still have PMR? I know there’s about 100 autoimmune diseases but haven’t heard of the inner ear disorder you commented about.

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Other then my funky immune system, I don't see a connection. I think it's a spurious correlation. My PMR didn't start until 2023. I got referred to rheumatology promptly, diagnosed 6 mo the later, about a month after the FDA approved Kevzara.

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thereselefever | @thereselefever | Apr 4 9:47am

OMG!! I was diagnosed with PMR two years ago. I think I probably had symptoms way earlier, but two years ago was hospitalized for a week.

However, 20 years ago I was having what you have just described. I had neurological, muscular, heart, blood - every kind of test imaginable, and they never found out what was causing it. And, I have never heard of this happening to anyone else. But now that there is you, I am wondering too, are they related at all?

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1 reply
pattiobrien111 | @pattiobrien111 | Apr 4 2:45pm

In brief,
Research all you can on autoimmune issues specific to your symptoms and the Autonomic Nervous system/Vagus nerve.
Functional Medicine is receiving a lot of attention and although this is not a new modality (East meets West) is it garnering a lot of attention of late. There are some exciting new modalities in energy healing but one must beware and research extensively. Tease out the chaff from the wheat so to speak.
I’m a fan of Ayeruvedic approach which is very old, and much older than Western approach. However, I would never throw out the baby with the bathwater. Both have their strengths. I’m not a fan of BIG PHARMA, but I also appreciate (as I am in the medical profession) the benefit of pharmaceuticals. It’s just gone full tilt on the other side of the bell curve re: medicines being so utterly expensive. Do your research.
I wish you the best.

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frenchfrank51 | @frenchfrank51 | Apr 27 8:12am
In reply to @thereselefever "OMG!! I was diagnosed with PMR two years ago. I think I probably had symptoms way..." + (show)
@thereselefever

OMG!! I was diagnosed with PMR two years ago. I think I probably had symptoms way earlier, but two years ago was hospitalized for a week.

However, 20 years ago I was having what you have just described. I had neurological, muscular, heart, blood - every kind of test imaginable, and they never found out what was causing it. And, I have never heard of this happening to anyone else. But now that there is you, I am wondering too, are they related at all?

Jump to this post

I'm sorry I'm late in responding to your post. For some reason I don't get email notifications when someone replies to my posts so I can easily miss them.

When you say that you've never heard of this happening to anyone else, we're you referring to the actual video clips of the boxers struggling to get off the canvas and back on their feet again? Does this happen to you too? It happens to me exactly like that almost every day. In the beginning with no precursor of pain but now I do have a lot of pain in addition.

At times I'm really mentally confused and can stay like that for hours. It feels like I've had a stroke or a seizure or Parkinson's disease (which my twin brother has). That's how it started 13 years ago and it is still happening. Awful thing to experience. And you're saying you have the same problem?

I've actually just replied to your own post on hip and back pain. Hope my reply helps.
Frank

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