New things going on... Can anyone relate?

[Givenstrength]

Lately I have noticed that just part of my left foot is staying cold. Like my last 3 small toes and balls of feet around them! Like really cold even though rest of foot and right foot is fine/comfortable.

Also... Not all the time but every now and then my upper back (between shoulder blades) hurt... Sometimes bad and sometimes almost feels like a burning feeling!

Don't know if those 2 are related but noticed them around about the same time! And like I said in my other post...my neck pain has been getting worse and my head throbs more often! I actually told my dr last visit (month or 2 ago) that I will deal with the everyday headaches and pressure if I have to but when it throbs I can't handle that!

Anyways... Anyone experiencing either one of these new symptoms of mine that I mentioned? Is it something to go back to dr about or just deal with for now?
Thanks

Holly

[chriss130]

I also have the burning pain in the middle of my back, about where my bra strap would be. My bottom lip burns all the time. My NS put me on Lyrica for the burning pain. It did help for a while, Dr. Kula in New York told me to quit taking it, if it don't help. So I have learned that when the pain gets real bad to just lay down on the couch or bed and relax. I also at times have the burning pain from the top of my head to the tips of my toes. It will crawl down my body.

Kristi

[selmaS]

  Well for yrs the only markers I would have said yeah ok...I have those, is the easy to bruise and slow to heal...I never thought I had ne of the others....and something u may want to check, as I said these r markers for only one type of EDS, there r several types.

  "selma"

[Givenstrength]

Not regularly no but everytime I have ever checked it it's been fine. I plan on talking to one of them either NL or NS soon just bc I have quite a bit of new symptoms since last apt first of December.
New symptoms include...
*twitching in my chin (which is almost non stop)
*burning in upper back between shoulders
*the cold feet thing
*2nd & 3rd toes on both feet go numb ALOT mainly left foot though
*not new but neck pain and headaches has been lots worse here lately

I have many many more symptoms but these just come about this year. So I feel I need to talk to someone about it but not sure who. NS just wants to see me when I'm ready for surgery and I'm scared to call NL to try and get apt bc I ended up having to turn all his dr bills in on bankruptcy so not sure they will see me? I wonder if I should try a new NL? Opinions anyone?

[rod44]

Hi Holly. Burning pain is usually an indicator of Nerve problems, you should report this to your NL/NS and have it checked. The cold feet should be checked as it could also be a Chiari problem or it could be related to blood circulation.
Do you have your blood sugars checked regularly?

Ray

[Givenstrength]

Thanks Selma... I don't think I have any of those markers for EDS except maybe easy to bruise! So that's a good thing!

[selmaS]

  To test for EDS there r several key markers that would stand out...such as.... velvety soft skin.....hyperflexible skin, and hyperflexible joints, slow to heal, easy to bruise....

  There r several types of EDS and this is just for one type.....but, the NL at TCI doing my eval dx'd  ...once u r dx'd with a few markers then u may get sent to a geneticist and a rheumatoid dr as EDS will cause all over joint pain....

Take a look at the EDS group page here on MedHelp for some pics of the way the joints hyperflex.( I would have said no way  just looking at this, but my joints do this)

  Well back to the cold, since it does not cause pain it is most likely not Raynauds .....so it is more likely a nerve disruption issue....and with chiari or a syrinx that is going to happen to some of us....

   "selma"

[Givenstrength]

Thank you Selma I really appreciate your response! No I wouldn't call it pain just really really cold and like I said it only feels like that on my left foot and only the three small toes and balls of feet in that area! Weird!

Also... How do they test for EDS?

[selmaS]

  Hi...I am here, and everyone is saying what I would....but u do not have to have a syrinx to have some of the issues u r having either...I had CSF blockage and no syrinx and was having drop attacks...so it is possible not to have one....

AS for the cold feet...it could be a nerve that is pinched or it could be Raynauds Phenomenon which many with Chiari that also have one type of Ehlers -Danlos can have...my feet always feel like blocks of ice...I got myself a pair of Ugg like boots last yr so I had something to help as my ankles also got ice like as well....

When I am cold like that I hurt ....I did not see u mention pain...I also would have electric like shocks...almost like static electricity and I thought it was my one pair of shoes, never realizing it was inside my foot....

The overcrowding itself may be the cause of ur issues, but do ask them to test u for EDS as it could be that as well.

  The pain btwn the shoulder blades seems to be chiari related...too many without a syrinx has this as well...but, it can be from a syrinx depending on where the syrinx is what nerve it comes in contact with....and that is y overcrowding may affect some with out a syrinx it all depends which nerve it comes in contact with.

I hope this helps, sorry I took so long, but it did seem u all were doing great giving advice

  : )

  "selma"

[Givenstrength]

I was told I do not have a syrinx... Last cervical MRI was in June/July so could one form that quickly?
Then I had a lumbar/thoracic MRI in November I think it was and said no syrinx.
Both NL and NS seemed surprised bc I have overcrowding and blockage so was surprised I don't have a syrinx.

Come on Selma where r u lol!

[mdavid924]

Hi. I am not sure if you were diagnosed with a syrinx when they diagnosed you with Chiari, but it sounds like you have one...I would suggest go to a neurologist specializing on Chiari. Most NS would entertain you only when you want and need surgery, but a neurologist helps you diagnose where the symptoms ae coming from and what particular part of your CNS is affected.

I find the burning pain on my shoulders goes away a hot pack, sometimes streching(check out selma's profile page where she has posted exercises for post decompression surgery), and when things really get rough, take a muscle relaxant like robaxacet.

But, jennylynch is right, wait for selma, she does have very good and sound advices...

Good luck.

[jennylynch]

I have the burning also. i am still waiting for my first appointment with a ns i cant wait.. this pain is horrible sometimes but mine never goes away its always there.. and i have a new symptom too of vision going crazy. I would honestly call the dr that knows the most on your condition. whichever understands the Chiari better and what is related to it and how  the symptoms work. but thats my opinion. wait for selma lol she always has great advice

[niki3350]

Yes holly I can relate to the cold feet, mine are always freezing even in hot weather, and my nose is never ever warm, always icy to the touch.

Back in August I experienced a real bad flare the worst so far, the back and leg pain were immense and I experienced the most awful sensation between my shoulderblades, more so to the left, I can only describe it as if somebody had inserted a tennis ball in there, try to imagine the pressure and discomfort, and this is it.

I am at present still in and out of very bad days and a few good days but not symptom free now since August.  The longest by far.

I would go and see yr GP just to be on the safe side.

Niki x x x

[Givenstrength]

Well that would lead me to my next question? Who should I call? My PCP isn't well informed on chiari and my NL passed me on to NS and my NS said just come see him when I'm ready for surgery. I'm not ready for surgery so I feel I should go see my NL but not sure!

[dkdean]

I find that my symptoms ebb and flow and some are here to stay--Selma mentioned before to keep an eye on new symptoms as they can be early signs of a developing syrinx.  My vision has deteriorated in the last 2-3 weeks and I am getting in to see the dr.  I'd go on feel...but whenever I have new symptoms or an increase or things become worse, I call--at least to see what they say.