Hello all,

I have been suffering for nearly a year now although I still have not officially been diagnosed. My doctor went through the procedure of eliminating everything else it could be. After all this he decided to refer me to the fatigue specialists at a hospital but my refferal got refused as they did not apply for funding:mad:

Shortly after this I moved and had to change doctors so they are now back to having to eliminate things and they are convinced that my diabetes is to blame.

Over the last few months I have generally been quite good. Over the last few weeks I have started to exercise a little more as my elderly dog has come to live with me now I am settled. He can't walk far so 3 times a day i take him for 15 minute walks. Since doing this I am starting to have real problems and alot of my symptoms have become worse and I don't know whats the best to do. Should I keep fighting or is my body telling me to slow down a little. I am starting to have problems especially with walking and my legs. I can only walk a very short distance before my legs become weak and shaky and my knees hurt. I find my legs are the main source of aches and pains although recently my arms and back have started to get quite sore. Also post exertional malaise is getting very strong and I am constantly tired and needing sleep during the day even though I am not doing anything.

I also suffer badly with sleep disturbance (hence I am writing this at 2.30 in the morning) Stomach problems, headaches, memory loss, confusion and concentration problems.

Anyway, I just wondered if anyone can offer some advice. At present I am taking Gabapentin to help with the nuerological pain I get and I have codeine to take if the other aches and pains get bad. What else can I do to help? Any tips to help with sleep would be good as I have tried everything I can think of. I often can't sleep then feel really rough the next day and sleep through the day.

Thanks to anyone that can help with any of the problems.

Kev

Hi Kev, It's 4am where I am and I am totally annoyed that I haven't been able to get to sleep tonight. The last 3 nights have been the same. It has to be the worst thing about CFS (if that is indeed what I hav!). I hav been having CFS symptoms for around 2 years now and although I can't get a real diagnosis - they don't offer me any other suggestions so I am going with that for now. I relate alot to your post. The exercise thing for me varies - some days a walk down the street will do me and other days I can push myself for a half an hour walk a day. (happy days!) One thing I do find is that usually once I get past the first 15 minutes of the walk - I start to feel better. I think it might be an adrenolin thing (too much floating around the system making me feel shakey and anxious) I wondered what your neurological symptoms were. I hav this light on inside my head all the time and tingling nerves in my heels. I also get numb (pins and needles) alot easier than I used to. I could go on but it's boring. I guess I wanted mostly to say that you are definately not alone. I don't know how old you are or even if that matters - I am only 34 years young and feel pretty ripped off with all of this stuff going on. Not able to work and money spent on suppliments and natural therapies eats at the budget.

The things I have found that seem to help me are -

speaking to a psychologist regularly (it is such a big life change all of this stuff and u need to let off steam and talk strategies for keeping your chin up) Staying positive is so important and you have to fight for it.

meditation. Even just 10 - 20 mins per day. I can't tell you the difference this has made to my mental state and believe that it is helping with the healing process. A lady that recovered from CFS once sent me an email listing the things that helped her the most and meditation was on the top of that list. At first I thought "bah..humbug!" but I am so gald now that I decided to take it on myself. U read so much on meditation and it's role in self-healing. It's a big one.

The Alexander Technique - I go for lessons in this method which really helps you to become more ZEN with your body. It slows down the crazy mind too and aids in the body-mind connection. It's expensive and not an option for everybody.


Hair analysis - to find out what u are deficient or toxic in - followed by treatment with the necessary suppliments.

Anyway, these things seem to be helping me as I have gone through some really tough times. There might be something in there for you too. It is a real test of your resolve and patience.

The exercise question - it's hard to speak for anyone but myself but I have found that I need to find a balance between listening to my body and sometimes going beyond what I think it can do. If you can walk for 15 mins or more - you should. If you hav a real bad day - giv the walk a miss but don't let it get u down. Exercise is so important to mental health also. I usually walk even if I feel crap - but I don't walk if I feel really really crap. I figure that even if I just walk to the end of the street and back - it's better than nothing.

Insomnia sucks totally. I understand the whole not sleeping at night and then needing to sleep during the day. I allow myself a few hours during the day if I miss out at night but I force myself to get up by about 11am, have a coffee and hope this helps me to feel tired by night fall. It's tricky. Some nights I sleep like a baby (Halleluia!)

Stay positive - it's a wild ride and not for the faint hearted but there are worse things and at least we are still alive. :-)

Hello Rachel,

Thank you for the tips. I have not been for any help with a psychologist so I will bear that in mind. My neuro pain in mainly focused in my legs and feet, i get nasty stabbing pains and also very uncomfortable aches. Although recently the aches have become quite prominent in my arms too.

I will have a look at the other bits you have mentioned as I feel like I need a little extra help at the minute. Mind you since my last post I have been back to the doctors and they are sending of my referral next week to the fatigue services. At last the ball is rolling again.

One thing I do use alot of is essential oils, not the rubbish stuff you see advertised but the proper concentrates. I make preperations using a carrier oil that allows me to use them in the bath or massage direct to trouble areas. I have a friend that runs a business in that line and I get all the free advice I need which is a good perk. But like you mentioned when you can't work, buying all these things is a stress. I hate being like this at 28 years old, i feel like I am 80!!!!;)