Hi, CMT community. Can anyone tell me if chronic fatigue is a curse of CMT? It doesn't matter how much rest I get I cant seem to get over it. I struggle to accomplish my work but sometimes I just wish I could find a supplement to help me.
Sorry to say I haven't found anything for the fatigue. If I get a real good nights sleep I might feel slightly energetic for the first 2-3 hours of the day--only if I wear my AFO'S though. Walking without them & I am worn out fast.
Speaking of AFO'S mine needed repair the other day & the Orthotics guy showed me the latest carbon fiber afo's. I really liked them better than my old bulky variety--I should have a new pair in a month or so..& can't wait to get them
Anyone ever try acupuncture, massage etc ?. Physical therapy & exercise don't seem to do all that much for me but I still do some excercise--biking & swimming.
Just like everyone on the board we are all looking for answers.Hope we can come up with new ideas that help
Thanks for the comeback. I was just making sure it wasn't something in my head. I heard that phrase all my life.
Hi Martha,
As you know, I'm the only one here who does not have CMT, but I can tell you that fatigue, sometimes crushing, seems to be present in all who suffer chronic pain and illness.
I think khill has a good point about getting a good night's sleep, which seems to also be linked to chronic illness and pain.
There is a gal on our Sjogren's group who has been studying eastern and western medicine for years, who hopes to soon complete her degree, and she tells me that vitamin D3 and B12 are often deficient in us. Both of these are easily checked in your bloodwork, and your Dr can tell you if and how much to take.
There are also some meds that are available for severe fatigue, and one is Nuvigil. Here is some info on that. There are a few ladies in other groups who take this and swear by it.
There is a free coupon available through your Dr to try it.
Hope this is helpful to you, and that you can get through this. I know I battle it too sometimes!
Wishing you well,
SK
Fatigue? My cmt fatigue is the same way. Live tired on most days but I have a 44 year old brother who does not suffer with tiredness? Makes me mad! Lol. I just started taking muscle relaxing pills last week to help mellow me out mentally to fight the angry mood that unfortunately cmt can put me in. It has helped a lot even though I use them sparingly.
I suddenly noticed that I'm not anymore so tired I was...the situation is better.. it certainly has something to do with the combo PXT3003 (Naltrexone, Baclofen, Sorbitol). Also my sleep is better now.
Coffee is used to combat fatigue in people with chronic fatigue.
Eric
SK said:
Hi Martha,
As you know, I'm the only one here who does not have CMT, but I can tell you that fatigue, sometimes crushing, seems to be present in all who suffer chronic pain and illness.
I think khill has a good point about getting a good night's sleep, which seems to also be linked to chronic illness and pain.
There is a gal on our Sjogren's group who has been studying eastern and western medicine for years, who hopes to soon complete her degree, and she tells me that vitamin D3 and B12 are often deficient in us. Both of these are easily checked in your bloodwork, and your Dr can tell you if and how much to take.
There are also some meds that are available for severe fatigue, and one is Nuvigil. Here is some info on that. There are a few ladies in other groups who take this and swear by it.
There is a free coupon available through your Dr to try it.
Hope this is helpful to you, and that you can get through this. I know I battle it too sometimes!
Wishing you well,
SK
Hi Buck,
I know, seems we all have our anger creep up on us sometimes, especially when we try so hard to keep up with the demands of life. Being ill is hard work! Always an appointment, a med to be filled, a challenge to overcome...
I have been fighting crushing fatigue and ague, like a flu you just never get rid of... I have to literally drag myself off the couch or out of bed lately, and cannot get enough sleep and rest! I don't even have the energy to get angry lately!
I have Tizanadine (Xanaflex) that I can take for muscle spasms and 'attacks', these attacks are so severe they look like a seizure, but there is no brain involvement, it's all muscle and tendon, and when it hits it draws up my entire body! I feel like I've been ripped to shreds when they are over. Problem is when I take enough Xanaflex 4mg, it can make the fatigue even worse, almost like a hang over. So needless to say when I'm fighting fatigue, the last thing to take are these!
I hope we can find a balance, a good place, Buck.
Thanks for sharing and for listening to me vent!
Wishing you well,
SK
HM,
I am so very glad to hear that you are getting to a better place through the PXT3003! This is just the best news! About the only option I have for severe pain is narcotic, so I know that the LDN will not work with it! Though I don't have CMT, I do have Fibromyalgia along with the autoimmune and have friends on the BF Fibro site who use the LDN with good results!
I am ever hopeful you continue to improve and that this will be something more available to all very soon!
I am so glad that you are still able to play piano. I turned on your video the other night, it was very soothing!
Thanks for keeping us in the loop!
Wishing you continued wellness,
SK
Hey Amsterdam Eric,
You bet! Though I'm not a coffee fan, I have a good cup of strong tea with me right now!
You know that dancermom just moved to Amsterdam! She said she is still trying to adapt to the cold, damp weather! That would be a big downside for me too, but I'd love to visit there! My mom's side is Dutch!
Always good to hear from you,
SK
Vitamin D3 supplements are a big help for me. Before taking 1000 mgs of vitamin D, I would be totally exhausted after lunch, and then I would rest for most of the afternoon. I still rest in the afternoons, but I have a lot more endurance. It made a big difference, and I was only slightly deficient. I didn't understand why I was deficient, since I was taking multi-vitamins and vitamin D with my calcium pills. Never connected it with the CMT.
My best to everyone.
Phoebe
Thanks for the heads up on the D3, Phoebe! I have never tested deficient, but feel like I must need a truck load!
Hi Martha,
Checking in on you to see how you are. Hope you are feeling better and getting recharged!
Wishing you well,
SK
Hi all,
Am new to the group and don't know, yet, if I have CMT. I do have Lupus and 4 other rare auto-immune diseases. I have battled with fatigue for many decades, and found the first step is to always stay in tune to how much energy I actually have, which is often contrary to the amount I want. Pay attention to how many spoonfuls of energy you have. http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
Second, I had to stop apologizing for my lack of get-up-and-go. The self-imposed guilt trips make it worse.
Third....... finding activities that were low energy that I enjoy and that do not turn my brain to mush, like too much "bad" tv. My DVR is a medical device! Lol. I draw and write and do other forms of art. I've not worked for 14 years, but these tips helped me, even then.
We must walk the fine line between taking care of ourselves and getting in a rut, which leads to depression, or worsens depression.
Blessings,
Faith
Hi, SK. Thanks for caring. I'm trying D3 and COq10 and will get B12 as soon as possible. May help. I found out my thyroid level is off. That can have a lot to do with the fatigue. I'll keep you posted.
HI Faith!
Good to hear from you! I am the only one here who does not have CMT or think I have it, I'm a helping hand.
I have the autoimmune diseases as well, and though I do not have a dx of Lupus, SLE has been suspected from the start. I've had 3 brain MRIs so far to continue to rule out SLE or MS, not that I don't already have my fair share of them!
Your advice is surely good, I draw and color with my grand kids, and they show me up every time! ha! It's always fun and I try to keep adding new things to keep it interesting!
Oh I know it, those ruts can be deep and hard to get out of! Glad to have you here with us!
Wishing you well,
SK
Oh, you are so right about the Thyroid, Martha, it can really zap the energy! Are they sending you to an endocrinologist?
Do take good care of yourself and keep us posted please! Yes, I really do care!
Wishing you well,
SK
i am tired forever 24/7 i never sleep more than 3 hours a day my dr is gonna try steroids or something on my back not sure i dont care my quality of life is minimal i will trade sadly i dont think i got the time left.
Hi bruce,
Good luck sleeping on steroids! You may want to ask for sleep meds so you can get at least 3 hours sleep! Don't mean to be a kill joy, but they really ramp you up! At least they did me, along with insatiable appetite, and unbelievable indigestion!
Hope you can get some relief, I go for months without sleeping well, and then for months where all I can do is sleep and lay around! It's hard to find a balance sometimes, but I'm still trying!
Hope something works for you real soon!
I hate to say it to you, but cannabis is a tried and true sleep inducer, so long as you get the right kind. A heavy, full Indica strain, and perhaps that in edible form.
Cannabis is so well known as a sleep -aid that you will be asked before a sleep study, to see if you have sleep apnea, if you have tried it as a sleep inducer,
Do not use alcohol, as it will wake you.
If your sleep problems are due to anxeity, which would need to be assesed by a psychologist at least, and a referal made to a psychiatrist.
I feel for you, but you can find solutions, don't stop trying.
Eric
bruce2u said:
i am tired forever 24/7 i never sleep more than 3 hours a day my dr is gonna try steroids or something on my back not sure i dont care my quality of life is minimal i will trade sadly i dont think i got the time left.