chiari, syrinx & charcot joint?

Hi all,
I have a question about charcot joint and it's relationship to syrinx & chiari.
I was diagnosed last year with CM1 & syrinx, but for many years I have struggled with mainly my rt shoulder, but multiple joints are becoming a problem now. I was even having physio on it, but the physio didn't help. I asked whether I could have charcot joint in the shoulder, but the doctor dismissed that quickly by saying I would be in agony if it was. I also know that syrinx can cause nerve damage meaning that I might not be getting normal pain signals, but he insisted I would be in agony.
The problems I do have, don't really restrict me too much, because like others who have been diagnosed with chiari & syrinx - we all learn to live with it, or adapt our activities anyway. I have been adapting for about 8 years with my shoulder. I worked from the age of 15 in nursing homes and that involved some heavy lifting (this is pre 1992 moving & handling reg's). I am able to lift heavy weights, but if i hang the washing on the line, i get pain. (I also know i shouldn't be lifting because of the CM & syrinx (doc orders) but i live in the real world where if i can, i will). I have good range of movement but with pain at a particular point that i will work thru if i have to. I sometimes spill a drink because as i've reached for it and started to get it to me, my shoulder will 'jump' . I've found that it seems to be the silly mundane things that cause the most discomfort: slicing cheese or bread, washing up, relaxing!!!!, brushing teeth etc. I would like to get to the bottom of this before I cause possible irreversible damage to the joint. My Dad has had major surgery to both his shoulders and been told that the next step is amputation if the problem continues!! So my question really is, has anyone had a diagnosis of charcot joint who has CM and / or syrinx? If so, what sort of treatments have been offered?
Thanks for reading. Lisa

[selmaS]

  Hi Lisa...since ur hip joint feels like it is popping out of joint that is most likely a EDS issue....and it can make the sounds u mentioned....and it can be quite painful...I know as I also have it and am in a flare right now.

Have they ruled out Lupus for u?....I would ask ur Dr to look into that as well...I am always borderline for it...and my pain always make the Drs think that is my issue.

The r rheumatoid Drs that can dx and treat EDS...but many times u must also see a  geneticist.....

  RA ia not an uncommon condition for those with chiari to develop either...plus the way the joints can swell up with EDS when hurting it is very much like RA.....so it can be diff to tell .

Do look at the Health Pages for anti inflammatory foods  it may help u with ur joints and the pain a little  and that is better than nothing .
  It can even help with the chiari pain.....

  Please update after ur Rhuemy appoint.

    "selma"

[selmaS]

Hi Lisa...many with chiari and or syringomyelia may also have a related condition called Ehlers-Danlos which is a connective tissue disorder. With this the person is hyper flexible and the joints may dis-locate.

I am  not sure where u got the charcot joint dx from, is it a family history condition?

u may want to check out the link here on hypermobility-http://en.wikipedia.org/wiki/Hypermobility

Let me know what u think...could this be ur issue, do talk to ur Dr about this.

   "selma"
  

[Autumn55]

If you go to Wikipedia and put in the following:

Neuropathic arthropathy

Its another name for Charcot Joint.  It lists the causes of Charcot there, one of them being Syringomyelia.  It doesn't sound like what you have, but you should have a look.

http://en.wikipedia.org/wiki/Neuropathic_arthropathy

Above is the link if you like.

[LisaRiu]

I have not had a diagnosis of charcot joint and i'm not sure what my dad's problem was - he didn't ask. It is just something i looked at as a cause of my joint problems.
I have also looked at elhers-danlos (11 diferent varients) and i'm not sure i fit that either.
I went to see my doc, who has referred me to a rheumatologist. Hopefully, they will ask the right questions and get to the bottom of this.
I have also considered arthritis (that is in my family history), but why do my joints crunch & crack more than most other people, even older members of my family that have arthritis. Sometimes other people will comment "was that YOUR shoulder making that noise". I have problems with most major joints (shoulders, elbows, wrists, hips & knees). Most of the time my shoulder will start to develop a dull throbbing which can travel down the humerous to the elbow while I'm relaxing etc. When i ride my bike it feels like i'm riding my hip out of the socket and it is quite painful. I have to stop and try to straighten my leg which almost always relieves it, but it happens every time i go out on my bike. Some days my hips just ache all day whether I'm doing anything or not. I had thought it was caused by the CM or SM, but I just want to know whether this is me, or whether there is another cause.
What do you think Selma? I will look at elhers-danlos again in more depth to see if it could be that. My apt with the rheumatologist is on the 3rd Aug. Do you have any questions you think I should ask. I'm pretty rubbish at being my own advocate and never seem to ask the right questions. I can do it for anyone else though!

[jenniferk86]

I do think you need to be heard and your pain and concerns need to be addressed.  I also do not think charcot joint would be your answer, not because of the pain, ie, charcot joint usually causes the person to lose complete sensation first and then they feel some pain but not the amount they should in relation to the injury, so, you are right in the fact you could have it but not be in complete agony and your doctor is wrong there... the two things that make me think its something else is that a) you can lift things and to stuff.... charcot disease litterally fractures, and disovles your bones to where you cannot use the affected joint... and b) it usually only affect 1 joint... and it is usually the foot and then second most commonly the shoulder, but it is not something that affects all of your joints, just 1 joint...

on the other hand  osteoarthritis, osteoporosis, arthritis, polyrheumatica, and a few other joint degenerating diseases are out there... there are actually quite a few plus there is the other , old age... I am not sure how old you are, but all of these you can lose the water in your joints, and you lose bone mass, and it can case pressure and you could also  have small stress fractures, these would be more typical of the achy sensation.  If you are concerned , you should have a esr and sed rate done for inflammation and an mri of the spine done.  this should rule out or confirm anything.

[selmaS]

  Hi Lisa...since ur hip joint feels like it is popping out of joint that is most likely a EDS issue....and it can make the sounds u mentioned....and it can be quite painful...I know as I also have it and am in a flare right now.

Have they ruled out Lupus for u?....I would ask ur Dr to look into that as well...I am always borderline for it...and my pain always make the Drs think that is my issue.

The r rheumatoid Drs that can dx and treat EDS...but many times u must also see a  geneticist.....

  RA ia not an uncommon condition for those with chiari to develop either...plus the way the joints can swell up with EDS when hurting it is very much like RA.....so it can be diff to tell .

Do look at the Health Pages for anti inflammatory foods  it may help u with ur joints and the pain a little  and that is better than nothing .
  It can even help with the chiari pain.....

  Please update after ur Rhuemy appoint.

    "selma"

[LisaRiu]

I have looked again at EDS and it could be that. Then again, like you said, Lupus also shares some symptoms too. Lol. I just hope the Rheumatologist can get to the bottom of it, and that he/she takes me seriously. I have seen what RA does to joints when it flares up, so I'm pretty sure it's not that. I was also tested for it a few years ago.
I will definately update you after my appt. Thankyou for your support Selma.
Lisa

[selmaS]

  U  r so welcome.....and I look forward to the update : )

   "selma"

[LisaRiu]

Hi Selma,

Well, I have been to my rheumy appt. He said that all my joints are normal. Said it was probably soft tissue. I'm not sure whether he is implying that i have a soft tissue problem, or whether it is a normal process of ageing (aging). All is not lost tho, because he has ordered an x-ray of my c-spine. I went about my shoulder (& some other joints) but he's more concerned about my neck. He did the usual 'hand on top of my head then tried to force my head down' and wondered why i said STOP!!!  Then head backwards, then side to side. They all seem to do that to me. At least when I go back to see him later this month, I can quiz him further. He also said he didn't hear and noises from my joints, but they never do during an appointment. At home it occurs all the time.....what can you do eh? I'm having the x-rays on 22nd then see the doc straight after. I'll keep u posted :)

[selmaS]

  Hi Lisa...ugh...I know it is like those dang walk  a few steps that way...in a small office  to see if u lose balance...well I am so focused on walking right now I know I will not lose my balance...it is when I am busy doing multi task things focused on many things I tend to lose my balance....but  if I am focused on what I am doing not so much...duh!!

sigh......so, I hope this guy finds something that is useful in helping u.

   Good luck on the 22nd : )

   "selma"

[LisaRiu]

Hi Selma,
Sorry I have not filled you in on my RH visit sooner, but it was a bit of a waste of time to be honest. He took x-rays of my c-spine & hips when i went to see him about my shoulders (mainly). He said my c-spine was straighter than it should be which could be muscle related, and my hips were fine. Apparently the pains & near dislocations are ok. He said the shoulder pain could be from the srinx or soft tissue, and the same for my hips & other joints. So that is that. I was a bit dismayed initially because I just felt like he hadn't listened and doesn't value the 'prevention' route.

I have decided to just live my life the way i did before i knew about the CM & SM. I suppose that is easy to say right now because i am feeling reasonably good. I'm not going to be stupid, and i know what i am able to do and when i'm pushing it.
For some strange reason.....maybe you could shed some light here......sometimes walking can be a little bit difficult and / or painful.......but i can dance with far less pain & discomfort. Even if i have been in pain before dancing, it seems to get easier when i dance. Do you have any idea why that may be? Don't get me wrong....i'm no ginger rogers, but i do like to have a 'bop' to music. I'm seriously considering taking dance lessons because my movements are less 'coggy' and i am more comfortable.

Anyway, hope you are well, and thankyou again for taking an interest.

Lisa

[selmaS]

  Hi Lisa....I am so sorry u had yet another Dr blow u and ur condition off.....
I am curious as to y u would feel better when u dance, unless it is an endorphin u release when u dance as u r happy???

  But, I am also curious as to how he tested ur joints?....what all did he do?

Many of us also seem to have a straightening of the cervical lordosis, the c spine...and yes, it can be muscle related....PT can help...but if u were ever in a MVA it could be undx'd whip lash too!

It sounds like this Dr is not a specialist for EDS....like not all NS's r for chiari....I went to a Rheumatoid Dr and he found my chiari and then released me as a patient....never mind I also have a rheumatoid issue...ugh, they all have issues, and we have to remind them we know more  about our bodies ....then their books and xrays show!!

I love dancing too, unfortunately I was not able to keep on going....I kept slowing down till I couldn't dance at all....which made me very sad....u just may have found something that we all have not....but to enjoy what we r doing may very well help pain.

I am doing well, thank u for asking...and I do hope u continue to post updates : )

  "selma"

[LisaRiu]

Hi Selma,

I thought it could be something to do with endorphins, and yes, I am usually happy when I dance. I think being in a more relaxed state too. I'm not saying that I'm not a bit stiff afterwards, but anyone who does physical excersice also experiences this.

There were no real tests, he just moved my limbs etc. When he did my hips the left one was painful so he ordered some x-rays. Also when he tried to move my head, I had to tell him to go slowly (I can feel the bones grating as they're turned). I suppose that's why he asked for that to be x-rayed too. I have been a passenger in several MVA's many years ago, but never suffered any injuries that I can remember.

You are right about us knowing more about our bodies, just a shame they forget to listen.

I'm sorry to hear that you cant dance anymore. Hope you've found something equally as good that you are able to do. I really love music and find that I cant sit still when I'm listening to it.

Anyway, I'm off out to do some more dancing at our village fiesta...(it's an all nighter).

Stay well & take care.
Lisa

[selmaS]

  Well dance for me : )

I watch my DD and that is good for now....she is a dancer, I just liked to dance...big diff...lol....but I am the same as u I can't sit still with certain music playing I just want to move, but my body does not comply.....hopefully soon.

All nighter....goodness be careful....lol....

The MVA's u were in could be the root to much of this....many times we r not aware of injuries sustained.....especially whip lash....it can progressively get worse over time and takes time b4 it is able to b dx'd.

Thanks, u too : )

   "selma"