Fatigue

Hi everyone-I'm new to the site and haven't read a lot yet, but was wondering if anyone else suffers from fatigue, very similar to Chronic fatigue syndrome? I am fortunate that my cmt is just moderate, but the fatigue and tired muscles are sure getting worse. It seems that exercise makes me feel worse instead of better, and being a very active person my whole life, it's frustrating.

I am very fatigue and at the same time I've problems with the sleep

Yes, sleep is a problem for me too. I’m waking up all through the night, finally having a sleep study next week, but it’s frustrating waking up so tired. Have you tried anything or found anything helpful? I hope you do

One good worth to try is melatonin.

Hi Tom and HM,

As you know, I'm the only one here that does not have CMT, but I can tell you that fatigue and sleep problems are on every single site of Ben's Friends that currently total about 36 rare diseases. These seem to go along with chronic illnesses of all types.

I have 2 systemic autoimmune diseases, where the immune system goes into hyper overdrive and attacks healthy tissue, bone, discs, organs... and it's exhausting. On a good day you feel like you have a bad case of the flu.

4 mg of Xanaflex usually does it for me! Hope you can find something that will allow you to sleep well too!

Wishing you well,

SK

Yes, I think most of us do. We have to pace ourselves and forgive ourselves when we are having a bad day (or two or three) and just do our best when we can.

I have had CMTs for 36 years. Lately I have had extreme fatigue. Ian also curious are most of us over weight? I had gastric bypass surgery 5 years ago loss 130 lbs I felt great almost like I could float! But I have hypothyroidism and with not being able to exercise because of severe stomach muscle spasms. So over the years I have gained the weight back. I am having the revision surgery. Reason being I atrophied more during the loss. Now I have be swelling really bad that the weight from the swelling in my legs are so heavy to carry. I lay down a lot because my body gets so tired but my brain does not shut off. I have ADD and my brain won’t shut up or shut off. I do not hear voices I just want to make that clear but I think because I am limited to what I can do. My mind goes places I can not. So I can’t sleep so I have take meds for sleep.

Thanks for the responses everyone. It seems that many also have other issues as well, I have had 7 surgeries this year which has been hard to distinguish between what is causing such fatigue, it's probably "all of the above". I have had my 10th knee surgery, thyroid cancer/tumor, prostate cancer, melanoma, and others. I greatly appreciate the tome and support from those on the site. One thing that I'm trying is Sandy Cappy's "Yoga for pain" it seems really good and I encourage people to try it-helps mind and body and breathing is so Important to pain relief, I find myself not breathing well when I'm in pain.

I agree with everything you mentioned, PCM! Well said!

Hi Whippoorwill,

Good to hear from you! So sorry to hear of these other struggles, like CMT isn't too much already!

I lay down a lot because it's so hard for me to sit, I push an office chair around the house with me, from the computer to the kitchen or dining room table as it is so hard to sit on a regular chair, and I am the one who chose all of the furniture! It's not the furniture, it's my back!

I do not travel well, it's the back there too. My husband was just talking to me about wanting to go to the beach, and I felt that pang in my soul to go. Five hours in a car, even if we stop every 30 minutes is just murder! I'd be in so much agony by the time I got there, that I'd be down flat and dreading getting back in the car to get home! So I get the mind moving at the speed of light, and I know how hard it is to 'turn it off' to be able to sleep!

I hope you can get through this next surgery successfully, we're all pulling for you!

Wishing you well,

SK

Oh Tom! You surely have been through the ringer! You have a great spirit for someone who has been through so much!

I used to do yoga, pilates, aerobics, kick boxing each morning before work, and loved it. The third time I was rear ended, brought on all of the autoimmune that I was genetically predisposed to, and my worst area is my back.

With every single DVD I have bought for mild yoga, even stretching, the first thing they do is have you lay on the floor! Can;t do it, but I'm wondering if I could lay on the bed and do it. I'm even considering going to the beginnings of Pilates for help. Pilates actually has it's genesis in bed bound patients.

I have never heard of Sandy Capy's yoga for pain, but it sounds like a very good idea to me, it doesn't take much for me to stiffen and lock up, and pain is certainly a big presence in my life!

Thanks so much for sharing this, I send you the very best wishes for wellness!

Here is some good info on Pilates, which began as PT for the bed bound.

http://www.pilateshudson.com/History.html

Cannabis. Make sure it is an "indica" or primarily indica hybrid.

Edibles work especially well at improving sleep as they last longer.

Ask the sleep study guys who will likely ask if one uses cannabis to help with sleep.

Hopefully you live in a medical marijuana state.

Eric


Tom said:

Yes, sleep is a problem for me too. I'm waking up all through the night, finally having a sleep study next week, but it's frustrating waking up so tired. Have you tried anything or found anything helpful? I hope you do

Hi Tom, I have a mild case of CMT called type 2, but it sure takes a toll on my body. I'm tired all the time and feel like I could stay asleep like rip van winkle. Good luck to you. I drown myself in caffeine to get going.


So sorry to hearof your accident, her video may be able to help you. She is on PBS once in a while and ypu might be able to preview some on the PBS website-all my best to you
SK said:

Oh Tom! You surely have been through the ringer! You have a great spirit for someone who has been through so much!

I used to do yoga, pilates, aerobics, kick boxing each morning before work, and loved it. The third time I was rear ended, brought on all of the autoimmune that I was genetically predisposed to, and my worst area is my back.

With every single DVD I have bought for mild yoga, even stretching, the first thing they do is have you lay on the floor! Can;t do it, but I'm wondering if I could lay on the bed and do it. I'm even considering going to the beginnings of Pilates for help. Pilates actually has it's genesis in bed bound patients.

I have never heard of Sandy Capy's yoga for pain, but it sounds like a very good idea to me, it doesn't take much for me to stiffen and lock up, and pain is certainly a big presence in my life!

Thanks so much for sharing this, I send you the very best wishes for wellness!

Thanks again, Tom, I'll check her out!

Hi my name is Denise (Whippoorwill) I have had CMTs since I was 10. 36 years and I am sorry to tell you it gets worse. From 2-13 I could run but 10-13 when all the sprained ankles happened. I miss running I would love to be able to get on a horse and run it close my eyes and be the horse. I live in the country and in the field down the road right across from my living room window. I love watching them!

Hi Denise. Yes, I also miss the things I used to do and would give anything to be able to play squash, go dancing and swim again. Also walk properly and without a frame. I would also give anything to be able to feel my lower legs and feet and also no feel like I am going to fall constantly. But I have to tried hard to count my blessings and think of all the things I can still do. Just keep positive and optimistic and mentally list all the things you can still do. No one can take away your imagination. So imagine away to your hearts content.