Does cmt cause neck pain

[kingswood57]

I have cmt type 1a and the usual problems with my hands and feet. I have severe pain in my neck, my doc said its being caused by my cmt. Has anyone else had this problem

[Amanita]

Yes, Kingswood. Though I wouldn't call mine severe, it can certainly be bothersome, and sometimes shows signs of trying to colonise my shoulder as well. I have been given exercises for it, by the physiotherapist whom I have been seeing since my CMT (1A) diagnosis. She didn't exactly say it was part of the CMT package, but she didn't seem surprised by it either. The neck exercises certainly help (and the pain creeps back when I don't do them) but it would be extremely challenging to describe them accurately in mere words !

I hope you'll be able to get some exercises to help you.

[williamalfred]

hi kingswood57

my name is Sue and i`ve suffered with neck pain for a few years found out last month this is not all down to cmt iv`e been diagnosed with vitamin D dificiency and some of the symptoms are like cmt muscle weakness and beiing very tired i`ve suffered with this for q uite a few years taking tablets now and hope they`ll help cos doctors put everything down to cmt.,

[UTTERJOY4 in reply to williamalfred]

Hi Sue,

I've been through the Vitamin D deficiency recently too and it really doesn't help when so many symptoms mirror those of CMT but after going on a course of tablets to help my Vitamin D levels are back to normal so I hope you have the same results. I would say you'll feel alot better after but along with this my doctor also told me I had an underactive thyroid which also mirrors the same horrible symptoms of the other two but I had to get the Vitamin issue out of the way 1st before starting on lifelong tablets to keep my Thyroxine levels normal and that may take some time. However, I try to keep my chin up and keep smiling and won't let it all beat me.

Best of luck and hope your Vitamin D problem is sorted soon.

[williamalfred in reply to UTTERJOY4]

Hi Utterjoy4 haven`t been on here for a while thanks for your reply, i`ve had a second lot of tablets because couldn`t tolerate the others and if these are no good i have to have injections yuk!!. I hope i feel better because i`m just tired all the time only got these tablets because my nuerologist insisted i had a bone dencity scan which was good for me because i now know i have osteopenia as well. I`m sorry you have an underactive thyroid think we ha ve enough to contend with don`t you. Good i won`t let it beat me either. Best of luck to you too and hope you get your thyroid problem sorted soon.

[Tracytp in reply to UTTERJOY4]

Wow! Me too! My doctors are the opposite and don't contribute anything to CMT. I have your same issues with Vit D and thyroid. I really don't think it's ALL coincidental that we CMT people have similar issues???

[Tracytp in reply to williamalfred]

Wow! Me too! My doctors are the opposite and don't contribute anything to CMT. I have your same issues with Vit D.

[Jazzyjoan]

Hi Kingswood, I've suffered with severe degenerative neck problems for some time (I'm 66). Because of my CMT type 1a, I tend to trip over absolutely anything and everything (and nothing at all!!) and consequently I look down at the ground all the time and I'm sure that this has contributed, if not caused, my problems. I recently read that people given bifocals for the first time tend to look down when walking and it is been found that lots of them are now suffering with neck problems, so this seems to confirm my theory.

[curlyburli]

I also get a 'bee sting' type of pain in my neck. I also have a displaced C7 . I have spent a lifetime constantly looking down to see where I put my feet when walking, so yes caused by my CMT.

[beachwine]

Hi Kingswood, as a fellow CMTer here is my neck story. In October I took one step up from parking lot to sidewalk & even though I was wearing my AFOs & carrying a cane I still lost my balance. I fell backwards & hit the back of my head & behind. Hubby had just dropped me off because I can't drive (CMT numbness). He rushed & picked me up. Long story short. I went to ER & had head to hip CT scan to check for concussion or broken bones or internal damage. Thank heavens for insurance. I found out later that fun day cost $56,000. Anyway I was OK from fall but CT scan showed I had severe arthritis in my neck. I have rheumatoid arthritis & take medication for it, but never knew it was in my neck. I was used to it in joints just didn't think of neck as joint. So lucky me I battle rheumatoid & CMT pain daily. Have you been tested for arthritis? It's a quick & easy blood draw. More than you wanted to know, but just a suggestion to check out. Doctors have told me it is common if you have one auto-immune disease you are likely to have more than one. Good luck.

[Tracytp]

YES! Severe neck pain! I take Tizanidine, Lyrica, Cymbalta and Hydrocodone (as needed). The neck issues also cause headaches. I finally "impressed" upon my pain doctor that SOMETHING... ANYTHING needs to be done--And I don't want to be a drugged Zombie!! They are telling me they can do an ablation, where they cut the specific nerves that are causing my muscles to tense and cause pain. I also have stenosis. The procedure is scheduled for the 28th of August. At the same time, I have an implanted spinal cord stimulator. It's a game changer from the waist down. It helps so much with leg and feet pain--which in turn helps my neck relax better. It took forever for my insurance to approve this procedure, but it's worth the wait. It's amazing that some doctors just schrugg their shoulders and tell you to live with it, while others actually do their homework and treat the many issues that crop up like a chain reaction with CMT. I have gone through several doctors, firing them and searching until I think I have found the right team. I am in America, so I have private insurance. But, it is my understanding that the UK has many more doctors familiar with CMT than the US. Nevertheless, those of us with CMT need doctors with whom we must have confidence. Otherwise, the obstacles we face with CMT become too much.

[Gardenflower1012]

I have CMT and notice that as long as I take vitamin "D" I do not have neck pain. Give it a try!

[SueP0]

I have CMT1b (MPZ) and have had a lot of neck pain and radiating arm pain to fingers. My nerves are thick as I understand it from my Neurologist.