Charcot-Marie-Tooth UK
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Is chronic pain in yor arms,legs and back normal when you are trying to sleep? I haven't slept poroperly in a week, PLEASE HELP someone!

Does anyone get chronic pain in their arms, legs and back whilst trying to sleep? I haven't had a good nights sleep for a week! I have had HNPP since 1997 but the past 6 months have been horrendous. Has anyone any suggestions? PLEASE! The pain makes me cry and my painkillers are not touching the pain at all. I can accept my body is getting older but it has only been the past 6 months that these chronic pains are happening, my skin feels like it is on fire and all the nerves are sitting on the surface, even raindrops hitting my skin is excruciating Can anyone explain why all this is happening to me after all these years? I need answers and my GP is hopeless!.

18 Replies

Hi Pam, I am so sorry you are in such pain but you don't say what medication you are on already s this may be the cause. The only thing that has aided me is Amitripline, particularly allowing me to get a good nights sleep,I also advocate finding a good medical herbalist. Let us know how you get on. Kind regards


Hi Whiterose,

thanks for your reply to my predicament. The medication I take already is 6x Gabapentin, 8x Dihydrocodiene, 6x Tramadol and 4x piriton (stops the itching) I have been taking these for years and to be honest I think my body has got used to them and they are not as effective anymore! I am still in so much pain and all I ask is for A GOOD NIGHTS SLEEP!


this sounds like neuropathic pain try taking an anti-inflamatory like ibuprofen or something like that or diclofenac take about an hour before you go to sleep and see if that helps if not try elevating your bed a little


Hi Bev,

Thanks for your reply but unfortunately Ibuprofen does absolutely nothing and Diclofenac make me sick so I cant take them either, I am in a right mess really but I just cannot explain why I am in so much pain after all these years with HNPP


Hello Pam....

As a long term sufferer of CMT Type 1A (69 yrs), my very supportive G.P. has prescribed for me, to be used as required: 1No. x 5mg Diazepam Tablet + 2No. x 500mg Paracetamol Tablets to assist me to relieve the musculo-skeletal, and muscular spasm's pain associated with this disease:

Remember, most importanly that you, your self personally must always fully be determined to ADOPT A MOST POSITIVE MENTAL ATTITUDE !

Say to Cmt, so sorry!

"your ongoing, and progressively worsening, and debilitating neurological medical disease, ain't gonna beat me" !

Just a recent update (Feb 2014) to my ongoing Cmt disease, which was causing me severe neuropathic nerve pain whilst I was sleeping :

My extremities, ie Toes / Feet / Fingers, and skin were all tingling + burning sensation's which were keeping me awake at night, bedclothes covering my feet were a total "No-No":

Again most my supportive G.P. prescribed for me a starting dosage of Amitriptyline 10mg, which had limited success : However, two weeks later the daily dosage was increased to 25mg, and again later, finally increased to 50mg taken before you go to bed !

Wow ! what a total difference it made to me, to me, with no "hangover" symptoms in the mornings:

I now "sleep like a baby", all my previous neuropathic nerve symptoms, have gone, also my Doc explained that Amitriptyline is now an 'older' class of "anti-depressent" drugs, that were once commony used to treat depression, however the medical professionals since then have, also discovered that it was a most useful drug, which can assist in the treatment "calming-down" neuropathic nerve pain(s) :

Best of luck to you ....

John .... (Glasgow) ....


Hi John, thanks for your reply I am off to the doctors tomorrow (Tuesday) so I will mention these drugs to him, but with the medication I take now I will be surprised if he gives them to me! I take daily for my HNPP 6x Gabapentin, 6x Tramadol, 8x Dihydrocodiene and 6x piriton (They stop the itching from the Tramadol). Mind you after all these years I don't think my medication is working too well now!

The fact that it feels like my nerves are on the surface of my skin is awful, my hubby is so careful when he puts his arms around me and it shouldn't be like this, even when the kids go by me and brush against my skin its an horrendous pain. Why it'shappening I would really like to know and I would like to know if it could get any worse!


Hello Pam49....

Here is a short description of your C.M.T. condition !

The brain transmits electrical impulses (velocity/speed) to our muscles via sensory (near to the surface) axon/nerves that provide information/feelings/touch back to brain):

Also your motor nerves (command/instruction pathways to muscles), which are both wrapped around in myelin sheathing which provides the insulation to the nerves:

These peripheral nerves are likened to electrical cables, with the axon wrapped in a substance called myelin. If the myelin is damaged and “leaks”, then the nerves impulses will be conducted at slower velocity than is usual: In CMT, the myelin sheathing is defective and “leaks” therefore the velocity, or strength of the electrical impulses’s, or signals is significantly reduced at the receiving muscle:

Catch 22 > Exercise whilst good, results in FATIGUE : Lack of exercise results in further deterioration/lack of muscle control:

Muscle Spasms / Sensitivity of Surface Skin / Anxiety / Walking (Gait) Difficulties / will follow on with this debilitating disease:

PS : POSITIVE MANAGEMENT ! of your condition is the solution, remember a typical G.P. may never see your condition in his life time !

YOU only YOU can cope with this disease : Fight it / Manage it / Don't let it grind you down...

John 1945


Thanks for your lovely reply John and all the info too it is really sweet of you to explain things to me. I think personally I am already having the muscle spasms and the surface skin sensitivity, the walking depends on how bad my legs are on the day and according to my kids Anxiety is showing too, basically I am falling apart! I have asked my GP to refer me to a neurologist as the last time I saw one was upon initial diagnosis in 1999! I know myself it has got worse by the amount of pain medication I keep being supplied with (although it doesn't seem to be working now) as back in 1999 I only took 5 tablets total in a day compared with the 26 or so I take now, I do try so hard to fight /manage this HNPP but this last few months I could just sit and cry because of the pain. I washed an polished my car yesterday and my god did I know about it when relaxing in the evening, but what else can we do? Like you said do nothing the body ceases up, do too much and the pain worsens, but hey it is now so nice to talk to other sufferers and read their experiences of this debilitating condition, I have always felt so isolated in the past as I don't know of anyone else round where I live that has it, Thank you all that have answered my questions it's lovely to know there are people that care!


Hi Pam

I was like you and tried all sorts of stuff that just made me a zombie, BUT I now have 75mg of amitriptyline at night, with 20mg citalopgram and two cocodamol and generally sleep really well. I also had my tonsils out recently and this has stopped the sleep apnea (which is something else you might be experiencing).

good luck,


Thanks KarenNic

I have been prescribed amytriptilene now but only 1 or 2 10mg tabs per night, I have also had the citalopram for depression and never realised they would work too, I might try your combination as I have them all in but I will ask my GP if I can increase the Amytriptilene first, Many thanks for your reply.


John are you the guy in the CMT booklet that has HNPP? The reason I ask is that when I put a question to them they tell me to email John at CMT UK so I tried but it got returned to me as I had the wrong spelkling of the name, they said JON and it is John, just wondered if it is you!


diclofenac are helpful but the gastro tablets I was given upset my stomach really badly so I need to try something else as they can give you stomach ulcers.


Hi Pam,sorry to hear your trouble. I have terrible muscle fatigue and aches with neural skin sensitivity. I don't like bed clothes on me or some clothing materials. I take ibuprofen with a herbal ginger tea an hour or so before bed, which does seem to make it easier to get to bed. I have read that both ginger and turmeric have anti-inflammatory and antioxidant properties. So more curries and ginger tea for me. You can get ginger supplements but you can't eat any other ginger when you're on them so I decided against that. My doctors are also useless - I once asked have 'you any suggestions about my sinus headaches I'm worried I'm taking too much ibuprofen?' upon which my doctor replied 'try to let the headache take its course sometimes instead of relying on the ibuprofen all the time' (which doesn't work if your headaches turn into migraines!) So frustrating isnt it?


Over time, pain meds either don't work and you need to increase the dosage or switch to something else OR they, in turn, fuel your pain and keep it amplified.

Pam, you are taking a whole load of drugs that may be fuelling the problem. My husband was on Tramadol and the emetic as well for his pain. Once he came off of them, the pain abated. Gabapentin is useful only as long as it works and does not induce any of the side effects associated with it. You switch between Gabapenting and Amitriptyline but take one OR the other, not both at the same time. Your Dihydrocodeine may be also responsible for making you nauseated and feeling run down and it sounds as if you need to come off of that slowly.

Drugs are not always the answer to managing pain. There are alternatives that can help. Reflexology is helpful for some. It does not rely on your nervous system to do the work and do it properly. Acupuncture/acupressure is helpful for some. Lymphatic drainage helps with swelling and can be efficacious. Aromatherapy can help with pain because some aromas are restful and peaceful and induce relaxation which can only help relieve pain. Meditation works well to manage pain. These alternatives do not have side effects that damage your body even further... drugs, especially at high dosages, do.

I know it's scary to think about reducing the amount and/or dosage of the drugs you are now taking but, if they aren't working now, why continue with them? The higher the dose, the more you encourage side effects you don't need on top of your HNPP and the more you rely on them to control your pain. If you do decide to reduce or come off of your drugs, don't stop cold turkey. Plan to reduce them over time. If you decide to try alternatives, you can add these in at anytime.

For me, I take Amitriptyline 30mg in the morning and 40mg at night. This, along with meditation, helps me to manage my pain. My doctor allows me to adjust this as I need it. Once my pain is managed for a few weeks at a new level, I drop the level by 10mg to see if I still need to be on the higher level. My body will let me know. This allows me to stay at a lower dosage of Amitriptyline over longer periods of time.

I am going for a lymphatic drainage to help with the swelling in my feet and ankles on Monday. I hope this will enable me to walk more and longer (if I can manage my exhaustion).

I hope I've been able to give you some ideas to help you Pam. No one idea works for everyone but I encourage you to take control of your pain management and explore some of the alternatives. Your doctors don't know your body as well as you do. Their knee-jerk response is more drugs, not pain management. All the very best to you! Jean


Thanks Jean I will put some of your ideas to my GP to see if I can reduce slowly some of my medication, hopefully I can then take fewer tablets and be in less pain, and I do agree with you; doctors just throw more pain relief at you time after time instead of listening to us as the patient. I had some amytriptilene but when I asked for it on repeat it wasn't given so although it helped I wasn't given it again! Typical GP eh!

Regards Pam.


Well folks I have had a really bad few days and pain meds not working as they should so off to docs I trot and I came back with a) continue the Tramadol but take 2 x 4 times per day and two x 4 times a day paracetemol. b) Also take Naproxen twice a day (morning and night) and also take Amitriptyline 10 - 30mg. Well I took the Tramadol which I have been on for years and increased it to 2 and also took one paracetomol and at bedtime took the Naproxen and the Amitriptyline 10mg (note not 30mg as advised) and wow i was completely zombied for 48 hours. Today I am in work so have had to cut down the meds drastically and yes the pain is very high but better than feeling like a zombie. It bad enough having a disability but with my mobility being so bad I need to have my wits around me to ensure I dont trip or fall. I was on celecoxib for years and that worked a treat but guess what they wont let you have that any longer. Oh well see how we go with the Amitriptyline - One advantage is I dont sdem to give a damn so guess thats one effect it has had on me


Hi Bev

I have been taking tramadol too for years but it does nothing for me. I now take Pregabalin ,Dihydrocodeine, tramadol and the odd amytriptyiline but still no pain free nights, I am getting sick of going to my GP for help as they are not specialists and they don't understand just what degree of pain we are in. My GP is now trying me on Duloxetine 20mg x 2 daily, have taken 2 today and I am still up in pain at 12.30 at night. What works??? ANYONE!!



Yes I get this constantly 😣 I get pregabalin of the doctor which helps


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