You're not crazy, or alone. I have joint pain also. It sucks. I had xrays of my hands done, and they said that I don't have arthritis. I have some form or another of an inflammatory undifferentiated connective tissue disease. However, I think that the syrinx plays a big role in this also. When do you see your doctor next? If it's a long time from now, I think that it warrants a phone call.

Do you get pain in your fingers that feels like someone is squeezing your finger really hard?

Yep, pain and stiffness. First hands. Then knees, ankles and elbows..comes n gos when it wants!!!

I have it in elbows, knees and ankles as well as the third toe on my right foot.

You're definitely not crazy! I have pain and stiffness in my neck, shoulders, elbows, hands, knuckles, knees (horrible pain here lately), ankles, and toes (sometimes they won't bend). I recently took a medrol pak and it didn't work. It started out being just every now and then but, now it's pain and stiffness everyday for the past 2-3 weeks...it's very frustrating to feel this way all the time.

I have the same pain but, you can add mid to lower back pain as well. The pain continued to increase and the stiffness if horrible! Please don't relate everything to SM. I asked for blood work...I wanted to be tested for everything! Thyroid, arthritis, hormones, CBC...etc...I was tested for many things and came back positive for HLA-B27, which is a form of arthritis called ankylosing spondylitis. This is a serious condition and shouldn't be discarded. Go to the Dr and request blood work and xrays. :) Take care

Thank You for all the info

You're welcome :) I hope it helps you.

Omg this always happens to me. I mean always. My second toe...my pinkey in.my hand...it started.off.where i woke up.one day and.thought man i must have broke.my.toe...killed me all day.nxt day i woke up.and its totally gone. It went on for like two months and was starting to.include my left foot or.right foot big toe.or.second toe maybe third toe but.not that much. Never both feet at same time til last week. And also my hands went thru the same thing. My pinkey and ring finger. Left hand right hand. Then after a like a month or two both hands at same time. But not all the time. And it used.to last one day now it can last for like 5-8 days with a broken toe or whatever. I never heard of anyone with syringomyelia that has had this happen. Thank u thank u thank u so much for posting. As soon as i read ur post i just started crying. Immediately.almost a relief.to know im not insane.lol!

nope not insane at all!! Mine comes and goes all the time. I have had ex rays and there is never anything wrong.

Woke up this morning with severe pain in my left foot just the big toe and the second toe. Im sitting with an ice pack and have taken a few hydrocodone and so far its a little better but i was crying before it just feels like the toes r freakin broken. Completely broken. My friends son turned one today and its his.bday party at 12pm and i just sent her a text saying i dont think i can go i can hardly freakin walk and to keep up with my three and four yr old is crazy!! Do u mind me asking how old u r? R u from new england part of the US? Married? Kids? How long have u had this lovely disorder for?!

sure, I am 36 years old and I have 2 kids, I live in the USA. and I have had this for 9 years

Im in so much pain right now im.rocking.back and.forth in.my basement cryjng hysterically bc my left big.toe.and.second toe r in severeeeeeee pain. I ived it i have icy hot.on it.riht now.and have taken like 10 vicoden 10's/325 and nothing its so bad. Dont want my kids to see me shaking in pain. So im hiding in.basement smoking a cigarette. My husband is.home thank god taking care of the kids like he always does. God he must feel like a single father. He is a wonderful person. He is my hero. He does.everything.in this house. Plus works two jobs and any side.job he can get which is a lot....poor thing. He must luv me lots....k i feel a lil better cuz i just venred. I freakin hate syringomyelia. Hate it hate it hate it...

If u look at my three pictures i posted this morning one of them is of.my left foot....it changes from big toe red and other toes bright white.to.big.toe bright whire and other toes dark red purplish....switching.meds on 10/25 at my nxt appt....upping my hydromorphone bc it doesnt do.anything i swear

Im 33 and have two kids too and live in the new england part.of the usa...u close to CT by any chance???? Im starting the first CT support group.for the ASAP.national organization..its gonna start in about a month

Sorry StaceyRa, I was gone foe most of the day at church. Sweetie I am so sorry you are in so much pain. My heart goes out to you. I have been there and I understand. I wish there was something I could do for you.
As for your question, I live in MO. I would love to be close to a support group but there is no such thing here. Most people have never even heard of Syringmyelia!!
I am having gastric bypass in a week to get some of the weight off my spine, most people think I am to small to have it done but the doctors seem to think it will help a lot, so I am willing to try it in order to relive some of this pain! God Bless you dear I will be praying for you