Does anyone else with CMT have burning hot thighs? About half way up on outer thighs. Also when I press this area it hurts quite a lot. I was wondering if this nerve problem has anything to do with CMT or if I'm the only one with this problem.
Actually I am quite surprised just how far this goes. Of course you know CMT effects the nervous system. When I was diagnosed at 13 years old the Dr said it effected the lower legs,feet,lower arms and hands. Jump ahead 33 years not true! Yes,I have experienced the hot thigh sore to touch. In fact most places on my body are extremely sensitive to touch. Example if pressure is applied to after it’s let up I feel pressure as if they are still there. Kinda like riding a bike or riding a horse you feel it for a few mins after.
I to have a question. I was diagnosed with sever panic and anxiety disorder 18+ years ago I was put on Xanax. Took for 16 years the switch me to Valumn for the last 2. The Dr dropped me off of them at once. Very dangerous! Those meds effect the central nervous system. I am having great problems being cut off now I am hypersensitive to touch very nervous and any louder sound just vibrate my body. Most it’s I am sure detox but has the med been holding back on some of the CMT nerve pain?
I have seen a whole list of meds that have adverse effects on CMTers. I printed it off and gave a copy to my doctor to keep on record.
Drugs Contraindicated with CMT
Drugs which may aggravate or exacerbate CMT
Adriamycin - for cancer
Amiodarone - for irregular heartbeat
Chloramphenicol - antibiotic
Cis-platinum - for cancer
Dapsone - for chronic and certain rare skin diseases, also for leprosy
Diphenylhydantoin (Dilantin) - for seizures and pain
Disulfiram (Antabuse) - alcoholics
Ethionamide - for tuberculosis
Flagyl (Metronidazole) - for trichomonas infection - read the labels on prescriptions for vaginal bacterial infections - alert doctor - can be found in combination with another drug for vaginal yeast infections, also used topically for acne and orally as an antibiotic by some dentists and doctors
Glutethimide (Doriden) - sleeping pill
Gold - for rheumatoid arthritis
Hydralazine (Apresoline) - high blood pressure
Isoniazid (INH) - for tuberculosis
Lithium - for manic depressive illness or headache prevention
Misomidazole - for cancer
Nitrofurantoin (Furadantin, Macrobid, Macrodantin) - for urinary tract infection - alert doctor
Nitrous Oxide (chronic repeated inhalation) - an anesthetic
Penicillamine - rheumatiod arthritis
Perhexiline (Pexid) - for angina
Pyridoxine (Vitamin B6) - a vitamin
Suramin, Taxol, Vincristine - for cancer
Megadoses of vitamins A, B6 and D can be harmful. Check carefully with your doctor and pharmacist before taking any drug. Ask them to look for the words "could cause peripheral neuropathy" in the drug description. In almost all the conditions in which these drugs are used an alternative can be found.
If you need lithium, or misomidazole for cancer or other cancer drugs, discuss possible repercussions with your doctor.
Zoloft can cause increased fatique but is not necessarily dangerous to those who need it.
Remember that all drugs have side effects. You could be extremely sensitive to drugs not listed here.
Megadoses of some vitamins can also be toxic.
Blood pressure medications that can affect the nerves:
Aceon, Altace, Avapro, Bumetanide, Bumex, Coreg, Corgard, Cozaar, Diovan, Enalapril, Ethacrynic Acid, Edecrin, Felodipine, Hydrochlorothiazide (HCT), Hydrodiuril, Hyzaar, Lasix (Furosemide), Lisinopril, Lopressor (Metoprolol), Micardis, Norvasc (Amlodpine), Perindopril, Prinivil, Ramipril, Univasc, Zestril.
Cholesterol medications that can affect the nerves:
Advicor, Altocor, Altoprev, Atorvastatin, Baycol, Caduet, Cerivastatin, Crestor, Fluvastatin, Lescol, Lescol XL, Lipex, Lipitor, Lipobay, Lovastatin, Mevacor, Pravachol, Pravastatin, Pravigard Pac, Rosuvastatin, Simvastatin, Vytorin, Zocor.
and Omeprazole. There may be more - these are just the ones I know about
Thanks so much for the med information. PCM. I too take a generic form of Valium for anxiety disorder. I don't take it everyday but still good to know that it can be dangerous for us.
That's quite and extensive list, isn't it?
Yes I think it is too. I am trying to find out whether or not I can take the pneumonia, flu and shingles vaccines at the moment. Doctors say I can but there is an awful lot they don't know about CMT. The last thing I want is to be worse than I am. Does anyone know how to find this out? I wouldn't be taking them altogether of course. The flu is every year, but the other two are one-offs. Has anyone had these? If so how did it affect you?