Hand, palm, wrist and arm pain...again

[StephS430]

Hi,

I have Chiari 6mm herniation and a syrinx as well and have been having increased problems lately. I'm trying to figure out if it's from the Chiari and Syrinx or not or if it's some kind of auto immune problem.  

Last year for months I had this pain in my hands, wrists, palms and arms that was so bad I couldn't lift my files at work, I had to have a co-worker do it.  Now it's back, but now that I'm in pain management (thank goodness), the pain isn't as bad but I know that's the only reason.  But it's so bad when I first wake up in the morning that I can barely stand it.  Then as the day gets better it feels better, but mostly after I've put my hands in cold water or ice. It seems when I lay down is when it starts to hurt more.

My hands get extremely puffy and swollen and hurt really bad.  They feel like they're going to implode they feel so swollen and the only thing that makes it feel better is the cold water/ice. When I try and squeeze my hand it hurts my palms and also feels so swollen, they will pop.

I'm just at a loss as I've had so many things happen to me in the past year that I can't keep count...swollen lymph nodes with negative biopsy, thyroid scan (I'm hypothyroid). CBC's all over the place, throat closing, hard to breathe, you name it, I've probably had it,  My thyroid keeps going in and out of whack (tested negative for Hashimoto's), but tomorrow the doctor wants to do more testing to see if it's auto-immune like Lupus. Also tested negative for Lyme.

What I want to know is if anyone else has had this arm, hand, palm, wrist problem and swelling in other areas of the body like ankles and legs (they are so swollen they don't move if you try moving the calf area).  I'm nervous about paralysis because of the syrinx and have had some episodes where I've had tingling in the extremities and on my spine and once I couldn't feel my foot when getting up out of bed (sprained my ankle because of it), but I just want some answers.  

I'm tired of the doctors not being able to find anything and I know something's wrong.  Thanks for letting me rant, hopefully someone out there has something to share.

Hoping everyone is having a pain free day. <3

[selmaS]

  Hi and welcome to the Chiari forum.

The member you are addressing your comments to, is not currently active....if you would like, you can send a PM (private message) which generates an e-mail so the member knows someone is trying to communicate.

You may also just want to create a new thread or add your comments to a current thread..

In reading the older thread for StephS430 she was concerned about having a thyroid issues, or the syrinx causing her issues....I do not recall if she got answers.....let us know how we can help you <3

[Bethhelp]

What is the update on your situation. I am going through similar situation right now. Thank you. Beth71

[selmaS]

  Hi and welcome to the Chiari forum.

As Steph said try not to get too stressed out, but stress is a symptom from chiari as it is a brain stem function....sinus issues are also related to chiari...so do try to find a Dr that can help u...we have a list of Drs and there is one for the UK it is a list for the Ann Conroy Trust-http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS-UK/show/1503569

  Keep us posted on what u find out

      "selma"

[StephS430]

Don't let the anxiety get to you, that's the worst thing.  Just remember it is out of your control and there is nothing you can do but go talk to someone and get MRI's and have them tell you what level you are at.  

Hang in there and just know there are lots of people out there that are willing to listen and lend you support.

[StephS430]

I'm going to the Neuro tomorrow, so hopefully they will find something.  I am sure he will order another round of MRI's to see what's going on.  I have been able to tell it gets better over the past couple of days with the setting of my bed (I have a select comfort bed).  So I'm wondering if it has to do with my cervical bulging discs or if it's Chiari/Syrinx related.  

I'm so sorry you are feeling that way, I hope it doesn't last but I'm with you, I understand how bad it gets. :(

[rasha25]

my recent mri scan has confirmed Arnolds but my family gp does not know the stage, i will see a specialist in the new year but the anxiety this is causing is unbearable this evening.
How do i prepare myself now and in the future is this going to be lifelong, i dont know what symptoms are what at the moment as i am suffering with sinus and stress.

[cash242]

I have been experiencing this so much this month please keep us posted on what you find, I hurt so bad this morning I didn't think I could get out of bed.

[StephS430]

Thanks so much Selma for the information.  I went to my Pain Management doctor and he is referring me to a Rheumatoid doctor to see if they can find out the cause.  Sometimes I just feel like it's down deep in my tissues (especially in my forearms when I experience pain there) along with the joint pain and then this morning I woke up and now the joint pain is all over, every joint seems to hurt now when I wake up and I'm always on my back when this happens.

I have a sleep comfort bed which you can change the firmness settings on and at first when it was firmer it seemed to feel better but now it doesn't seem to be.  One thing that is odd is that when I fall asleep on my hubby on my side when we're laying on the couch, I don't have the pain, so it's really odd.  He was the one to mention that to me. I hadn't thought about that before.

The last MRI showed the syrinx was actually shrinking, but it's that time again to get my annual MRI.  So I need to go to the neurologist after the first of the year to get that done.  He had in the past when I had the joint pain diagnosed me with fibromyalsia but I honestly don't think that's what it is. I tend to think that's a diagnosis they use when they can't find out what's wrong, but I'm def not a doctor, so I don't want to say that's for certain, just can't help but feel like there is something more to it.

Connective tissue disorder (not knowing exactly how it feels) seems like it might be an answer, but this all just started last year after I had a really bad sore throat for a couple of months.  It was weird, never had that happen before and they blamed it on acid reflux.  Same symptoms happened in order again recently, sore throat (ENT saw spot on back of throat which feels like it healed with acid meds) diagnosed me with LPR (Laryngopharyngeal reflux), then tingling in the upper middle area of my spine, then all over joint pain.  It's odd the symptoms all appeared in the same order like last time, and that they've happened twice.

I've had tingling all over my body, legs that have fallen asleep very easily, numbness, etc. Maybe that's from the syrinx, but I'm not sure. Since it's shrinking they don't want to touch it. I want to have children still, so I'm hoping that they can figure all of this out soon because I'll be 37 in April.

Hopefully the Rheumatoid doctor can help, at this point I don't care what it is (I say that but don't really mean it), I just want answers.  I can't keep waking up every morning feeling like someone beat me up and broke all of my joints. :(

Thanks for listening, it helps to talk to someone who can understand what I'm going through.  Happy Holidays. :)

[selmaS]

  There are basic tests, and not everyone will have all the symptoms, I was the  first one to fight and say no this is not me, I do not have this, BUT I do.

A Rheumatoid Dr is the one that will test u for this...and then they do a skin biopsy once u test positive to see which type u have ....there are many types.

Surgery for Chiari is done many times to help prevent the formation of a syrinx, if u already have one, u should be looked at for surgery to help restore CSF flow to help reduce the size of ur syrinx other wise it can continue to grow....they also put pressure on the nerves and if left too long can cause perm nerve damage....

  I do have EDS as well as tethered cord, and chiari and a few bulging disks....the pain from my joints can feel like it is just all over pain....weakness and fatigue.....numbness  is typical too.

And the fact u have a syrinx it is going to be diff to know if it is that or not....

Here is a link to the EDS group here on MedHelp...check out the videos by a Dr that also has EDS-http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc

http://www.mayoclinic.com/health/ehlers-danlos-syndrome/DS00706/DSECTION=tests-and-diagnosis

   "selma"
  

  

[StephS430]

Hi Selma,

They did an antibody test in 2006 that tested me negative for the Hashimoto's.  My dr just raised my levothyroxine again, it goes back and forth a lot lately, he's upped it to 75 mcgs then down to 50 and back to 75 again.  I don't want to get re-checked for the Hashi's just auto-immune disorders in general.  I don't know how they all work, which is why I'm hoping my doctor can help me tomorrow figure this out, at least help me get there.  

One of my doctors referred me to a Rheumatologist which I will go see in a few weeks.  I tested negative for RA last year, so I know it's not that.  I don't recall ever being tested for EDS, but I never really showed the classic signs of it so never thought to get tested. Is there a specific test for it or do they just test you based off symptoms?  

I know another visit to my NS is in order, I just think I need a new one.  He hasn't really done much for me and I need to do some more research to see if there are any top rated ones in my area.

I was also thinking about connective tissue disorders but wasn't sure how that worked or if it was the same symptoms as I was having or not.  Do you have this? If so what are the classic symptoms?  I've also had a lot of tingling and extremities falling asleep and a tingling, crawling sensation at the middle of my spine which I'm not sure if that could be from the syrinx or not.

Thanks for the reply and any help you can provide.

[StephS430]

Thanks so much linnielou, it's so nice to know there are people out there who support you through times like this. It's amazing how many wonderful people I've found because of having Chiari.  

One of my doctors told me all of the stuff I was going through was in my head and wouldn't let me leave his office without valium. I had to talk him down from xanax how bad is that?  One of my other doctor's told me she hasn't found someone more in tune with my body. So you just have to weed your way through the doctors who are supportive and who just want your money.  

It's interesting to know that you've had the lymph node problems too, at least your NS told you that's what it was related to. I thought maybe it was something worse because they kept coming and going every so often which is why I was thinking auto-immune.  

Hopefully they will find out something either way.  Thanks again for your support and the info. It means a lot :)  

[selmaS]

  Hi...sounds like u have many of the chiari xtra's.....I am confused when u said u tested negative for Hashimoto's but want it tested again in case it is an auto immune condition, Hashimoto's is auto immune, did they just test the TSH? or did they do the free T3 and free T4 and TPO antibodies?..an ultra sound of the thyroid can help too.

The arm and body pains u r talking about.....many with Chiari have related conditions in addition to auto immune conditions we also get connective tissue issues too...like Ehlers-Danlos which can cause a lot of pain...coupled with the pain and weakness from Chiari it is diff to know which is which.

   Have u been checked for related issues like EDS?

     "selma"

[linnielou232]

I feel your flustration's.  As for your lymph nodes.  That is actually how I started on my journey of discovering I had Chairi.  I think that is the problem with getting the right dx's because we all have different symptoms and we feel like we run around in circles to find answer's.  I have had surgery. 4 in all and my NS keep's telling me that is why I am still having problem's.  I requested a full spine flow study which I am having done next week.  Just wanted to say to you to keep being persistant.  You know your body and you know something is wrong.  It's finding the right dr to listen.  I have been very blessed with a dr that will listen and look for answer's for me.  I wish the same for you.  We are here for you.  I can't give you the aswer's you are looking for, but I can relate to how you are feeling.  Your not alone.