Monday, April 26, 2010

Question to all CMT'ers

I am really curious to know what kind of pain other CMT patients struggle with. Recently I have been connecting with a couple of women my age who also have CMT and they don't exactly feel the same pain I do.

My surgeon thinks the pain I feel on my thighs is not typical of CMT cases, which is why he tried to help me with the steroid injection. Interestingly, my youngest sister was diagnosed with this disease about a year and a half ago and she feels the same pain/pressure on her thighs.

If you read this entry, please let me know how CMT affects you. I would really like to see if anyone else shares this thigh pain, and if so, have you tried anything that helped with your pain?


Milena said...

Hey...Look at me!!! =D

Lenka said...

Is the pain in the muscles?
My CMT pain is often secondary effects of the progression- high arches and tight tendons caused arthritis in my feet with is constant gnawing pain. My back has scoliosis so the muscles overwork and cause pain sometimes.
I've also had shooting nerve pain through my hips because the hip joints didn't form well, but that comes and goes, and is often a stress-signal, when I have a lot of stress in my life. It's like the nerve gets pinched and I almost fall over mid-step.
I also get sore muscles, aches, and huge fatigue. I haven't had the thigh pain you describe.
I do get numb fingers these days- nerves getting compressed in the joints.
I know some CMT patients have burning nerve-pain and take Lyrica for that as the nerve insulation is damaged. I'm lucky, knock on wood, not to feel that.
CMT is so different for everyone. But it's also important to pay attention and make sure you don't have an additional challenges making it even harder for you. Good to research it!
Best wishes, Lenka

Lenka said...

oh, yeah, I've had success with Ultracet (acetaminophen and tramadol) which I don't take daily, but as needed to get a break from the pain.
Good luck! Lenka

Esther said...

Hi Michele

I don't really have pain but do get spasms at times. I'd love to talk more with you.


matym said...

Hi Michele, I don't get much pain. Mostly in my feet and legs. The odd pain in my hand's. Although I don't get pain in my thigh, I do feel like they are not working right sometimes. I feel that they are weaker then the rest of my leg. Nothing new, hahahah. Anyways, it does bother me but not as much as my feet pain.

I have a blog as well if you would like to check it out.

Cheers, matym

Marcela Menan said...

Oi Michele!!!!
Tenho dores todos os dias em todo o corpo, mas cada dia numa área específica. Como convivo há mtos anos com isso, acho q me acostumei. Tenho fortes dores na coluna (segundo o médico piorou por causa da última cirurgia), sinto meus membros formigarem e travarem, tenho fortes cãimbras (principalmente nos finais de semana q não faço exercícios). Tenho muito cansaço e sinto q as coisas estão piorando conforme vai passando o tempo. Minhas mãos não foram afetadas, pq desde q foi descoberta a doença as exercito muito. Mas tem dias, como hj, q fica difícil até pra digitar. Minha vida é assim... nunca sabendo até onde vou...talvez lutando hj pro futuro de amanhã... qdo conto essas coisas às pessoas elas costumam dizer: "- Ahhhh, mas vc não tem nada!!!!" E, qdo paro pra pensar na situação de mta gte no mundo, vejo q não tenho nada mesmo...
Nos acostumamos aos nossos pézinhos diferentes (minha irmã diz q parece do Baby da Família Dinossauros) e a nossa vida com mais esforço. O q temos q fazer é agradecer a Deus por cada dia q possamos andar!!!!!!!

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