Bones popping out

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I have an issue and I wnat to see if it is ME related or not.
I get like a flare where my body hurt and I get knotty, then my join like get lax and then I get bones to get out of place. Shoulder, tail bone / hip something. I also had a shoulder blade something get out of place.
Does this happens to you? What kind of doctor can help me? I had about 11 episodes all year and I don’t think this is normal?!!!!
I will do a complete genetic screen to look for EDS
 

Lisa108

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Aside from the EDS screening, i was reminded of a girl I knew, who had serious food intolerances. When she accidentally ate something bad, several joints would pop out. Don't ask me about the science behind this. I don't know. But it did happen even when she thought the food was safe (but the producer changed some ingredients).

So if your flares are somehow triggered by food...
 

ljimbo423

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I have an issue and I wnat to see if it is ME related or not.
I get like a flare where my body hurt and I get knotty, then my join like get lax and then I get bones to get out of place. Shoulder, tail bone / hip something. I also had a shoulder blade something get out of place.
Does this happens to you? What kind of doctor can help me? I had about 11 episodes all year and I don’t think this is normal?!!!!
I will do a complete genetic screen to look for EDS
I get this quite often, weather I'm in a flare or not. It seems fairly common with ME/CFS. My shoulders slip out of place often, especially when I'm reaching for something.

My hips sometimes do the same thing but they always slip right back into place. I think ME/CFS sometimes effects the ligaments around joints, making them weak and somewhat loose.

I don't know what kind of doctor you would need to see about this but I wish you luck!:)
 

ljimbo423

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If it is common in ME, I don’t want to loose my time going to doctor, I just never heard other people talking about this so I asume was unique to me and not ME/CFS related.
I have read several or many posts over the last few years here of people having the same joint slipping problem. Hopefully some others will see this thread and add a little to the discussion.
 

Mary

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If it is common in ME, I don’t want to loose my time going to doctor, I just never heard other people talking about this so I asume was unique to me and not ME/CFS related.
This has never happened to me - I'm sure I don't have EDS - but I have heard of it happening in people who do have EDS. The lax tendons let the joints/bones slip out of place and it can be quite painful. I would definitely look into EDS, and maybe put something about EDS in your title.
 

lafarfelue

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I've always had issues with joints subluxing, and my TMJ dislocates/stays subluxed for days at a time sometimes. It all became worse when I could no longer exercise. I can't lie on my sides for too long, especially in a flare, because my shoulders just sublux and I wake up in excruciating pain (til they slip back in again).

I've had mild spinal issues for most of my adult life (including herniated disc/s which also happened to my mother and grandmother) which feels like connective tissue.

No one's taken my requests for testing for EDS (or other hypermobility spectrum diagnoses) seriously yet. I feel it would be beneficial to have some testing and/or some kind of diagnosis... it can mean additional support, lifestyle changes that can help and help to stop the body getting worse (and potentially treatment down the track should it ever become available).
 

Wayne

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I get bones to get out of place. Shoulder, tail bone / hip something.
Hi @seven, sounds like a pretty difficult situation! -- It kind of sounds like some of the things that can happen to people who take Cipro, Levaquin, or some other kind of fluoroquinolone antibiotics. I've heard of people taking a single dose, and on the same day, have their shoulder fall out if its socket. I've also heard of these Abx being the precipitating factor in developing ME/CFS--even a single dose. -- I hope you can track down the cause of this!
 

Sushi

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f it is common in ME, I don’t want to loose my time going to doctor, I just never heard other people talking about this so I asume was unique to me and not ME/CFS related.
For me it is EDS and it seems a lot of ME/CFS patients also have EDS.
I will do a complete genetic screen to look for EDS
As I remember, they haven't worked out the genetic signature for some types of EDS.
No one's taken my requests for testing for EDS (or other hypermobility spectrum diagnoses) seriously yet. I feel it would be beneficial to have some testing and/or some kind of diagnosis... it can mean additional support, lifestyle changes that can help and help to stop the body getting worse (and potentially treatment down the track should it ever become available).
You can pretty much diagnose yourself with the great EDS tools available on EDS sites. Since most of the markers are physical things that you can measure yourself, you can be pretty accurate. If you test yourself on an EDS site and the results clearly indicate EDS, you could just show the results to one of your doctors and get them to put it in your medical records. And, if you seem to have EDS, you could just incorporate life-style measures into your life. Unfortunately, there are any good treatments I have found other that strengthening muscles to make up for lax connective tissue.
 

lafarfelue

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You can pretty much diagnose yourself with the great EDS tools available on EDS sites. Since most of the markers are physical things that you can measure yourself, you can be pretty accurate. If you test yourself on an EDS site and the results clearly indicate EDS, you could just show the results to one of your doctors and get them to put it in your medical records. And, if you seem to have EDS, you could just incorporate life-style measures into your life. Unfortunately, there are any good treatments I have found other that strengthening muscles to make up for lax connective tissue.
Sure. Though not having a formal diagnosis doesn't help with things like additonal medical support or getting disability pension. It can mean that it's far more difficult to get further medical testing for things like CCI etc.

Also, there are other hypermobility types; it'd be good to be able to pin these separate things down and work to each type of issue to the best of research, knowledge and ability.

YMMV of course, but I'm always going to be after as precise a dx as possible where I can. Especially as one CFS 'expert' here told me I 'probably' had POTS but 'not to bother' getting tested for anything after my ME/CFS diagnosis as it would 'likely just lead to further issues being uncovered'(??)... but since then, another Dr actually treating my POTS with off-label meds has helped me regain significant enough functionality that I can still support myself.

In a semi-related vein, I skimmed some research the other day about how crowded teeth may affect the skull-neck axis to the point of causing serious axial instability. And, as those with EDS/HSD probably know, having hypermobility/connective tissue disorder can affect teeth crowding a lot.

There are flow on effects worth considering re connective tissue, whether it's genetic or a gradual tissue break down due to things like Coxsackie and/or other cumulative effects of long term ME/CFS.
 

lafarfelue

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If didnt know this can happen in coxsaxkie, I have the b2!!! And I think i had reactivation ( bumpy mouth roof and acid reflux are my tell tell). Will do some digging! Thanks for pointing this out!
I've seen it mentioned a few times on the forums here, so hopefully you can find info about it. And hopefully something to help with your joints, too.
 
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I've seen it mentioned a few times on the forums here, so hopefully you can find info about it. And hopefully something to help with your joints, too.
So you have a link? I have scoured the Internet with no much luck. I don’t know if it is becuase of the cell. I will try googling from computer to see if I get better luck
 

lafarfelue

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So you have a link? I have scoured the Internet with no much luck. I don’t know if it is becuase of the cell. I will try googling from computer to see if I get better luck
The Google search in the forum Search at the top right, "Coxsackie connective", and other similar combinations of words, the posts that mention it should come up.
 

lafarfelue

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Brainfog is bad this morning. I remember one or two threads that discussed the longer term effects of chronic viral infections on various tissues in the body, but unfortunately can't remember the specifics of discussion of how the effects came about. Too much technical bio/chemical terminology to sink in for me. Enterovirus are kinda known for causing mytosis though, right..?