Chronic Fatigue Syndrome/M.E. Society

Original post by Anonymous

I've been trying to find the right drugs, treatment and care with this condition ever since I was confirmed to have in Apr 12. But I am still struggling day by day, and insomnia by night on amitriptyline. Not tried pain meds, aside from over the counter, and trying to use mindfulness techniques to oversee through the problems of ME.

That was me. Ugh anonymous is annoying :smile:

Reply 362

fredscarecrow

18

Original post by Anonymous

I've been trying to find the right drugs, treatment and care with this condition ever since I was confirmed to have in Apr 12. But I am still struggling day by day, and insomnia by night on amitriptyline. Not tried pain meds, aside from over the counter, and trying to use mindfulness techniques to oversee through the problems of ME.

Original post by Quiet _One86

That was me. Ugh anonymous is annoying :smile:

it can be hard and depends entirely on your doctors. I had many unhelpful ones and whilst one put me on the gabapentin, she took that as the only solution I needed. I was lucky in that I had to move a lot for uni so saw a lot of different doctors! It was Bath that finally saw me taken seriously, I think because they have a specialist department within their rheumatic diseases hospital, the local doctors are more clued up.

Just stick with it. If you're not happy on a drug, make it clear youre not willing to take it. On amitriptyline I preferred the pain over the side effects, and I made that very clear. Gabapentin isnt a popular drug so im not surprised youre struggling to get prescribed it. But amitriptyline isnt working for you, so maybe raise gabapentin as an idea? Dont insist but explain you know of others with CFS who have had success with it.

Nothing is a miracle cure though, remember. I managed to achieve a-levels, BA and MSc whilst not having anything but the most basic treatment simply because I boom and busted to a huge extent. By far the hardest phase I went through was when I was undergoing treatment with the hospital. I had to let the illness take almost complete control of me to find a way of working with it and reducing the symptoms. That meant not booming and accepting the pain and exhaustion.

I now work 50hours a week in my feet, so you could say Im cured, but I still cry myself to sleep from exhaustion and discomfort.

I dont mean to be negative, there is a light at the end of the tunnel for most of us. But im warning you not to get your hopes up for a miracle recovery because I dont think it exists. I Will never be like non-cfs sufferers. But I have learn to cope with what I have. The disappointment when another drug, another method etc doesnt work can almost be more damaging than anything else.

Reply 363

Thanks for the reply fredscarecrow (for some reason the ipad won't let me quote you)

i have also tried sumatriptan for my headaches, it's a migraine treatment but I was told to try it anyway. It was awful, it causes blood vessels to constrict so you get tightness and heaviness in parts of your body. It did nothing for my headache and make me feel like I was dying!

Im im a bit reluctant to try the gabapentin now after that experience, it's difficult when I'm trying to revise for my exams. I think I will speak to the consultant again about leaving it a couple of weeks. I am taking paracetamol every four hours and although it doesn't get rid of the pain it helps me manage it better so I can sleep more comfortably, it also doesn't make me feel sick and groggy so I can get on with my revision!

Reply 364

fredscarecrow

18

Original post by DollyMaii.x

Thanks for the reply fredscarecrow (for some reason the ipad won't let me quote you)

i have also tried sumatriptan for my headaches, it's a migraine treatment but I was told to try it anyway. It was awful, it causes blood vessels to constrict so you get tightness and heaviness in parts of your body. It did nothing for my headache and make me feel like I was dying!

Im im a bit reluctant to try the gabapentin now after that experience, it's difficult when I'm trying to revise for my exams. I think I will speak to the consultant again about leaving it a couple of weeks. I am taking paracetamol every four hours and although it doesn't get rid of the pain it helps me manage it better so I can sleep more comfortably, it also doesn't make me feel sick and groggy so I can get on with my revision!

I think its sensible to wait until after exams. Messing around with medication is never fun, but I certainly wouldnt want to do so during exams!
Make sure you do go back though as its really not good to be taking paracetamol like smarties - not suggesting youre reckless but from personal experience, its a vicious cycle.

I can see why they prescribed amitriptyline - its meant to be very good for headaches. You might benefit more from the 'mindfulness' side of cfs treatment than medication. Have you ever tried yoga, meditation etc? Again I know it sounds dismissive but it did me a world of good because you get into a pain cycle and the only result is your muscles are crazy tight and you get a massive tension headache, plus aching limbs. My occupational therapist taught me some excellent breathing/memory tasks to help 'rest' (not sleep!) And give my body a chance to recoup every now and then.

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Reply 365

Original post by fredscarecrow

I think its sensible to wait until after exams. Messing around with medication is never fun, but I certainly wouldnt want to do so during exams!
Make sure you do go back though as its really not good to be taking paracetamol like smarties - not suggesting youre reckless but from personal experience, its a vicious cycle.

I can see why they prescribed amitriptyline - its meant to be very good for headaches. You might benefit more from the 'mindfulness' side of cfs treatment than medication. Have you ever tried yoga, meditation etc? Again I know it sounds dismissive but it did me a world of good because you get into a pain cycle and the only result is your muscles are crazy tight and you get a massive tension headache, plus aching limbs. My occupational therapist taught me some excellent breathing/memory tasks to help 'rest' (not sleep!) And give my body a chance to recoup every now and then.

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i definitely will go back, im taking soluble paracetamol as it's meant to be more gentle on the stomach but even so it's still not good.

My CNS has given me some information on mindfulness meditation and she said we can look at it properly at my next appointment so I am quite looking forward to this.
I have the problem with tight muscles, sometimes I wake up and my legs are so stiff I can barely walk! Not pleasant!

(edited 10 years ago)

Reply 366

Hello everyone,

When I went to my consultant appointment a couple of weeks back she did some blood tests. My vitamin D was quite low which she had already suspected so prescribed vitamin D tablets. It also said in the letter that I had a neutrophilia of 9.9 when in all my other blood tests it's been between 3.1 and 3.5. I've read this can be due to bacterial infection so am wondering if I should make an appointment with my GP, I've had a lot of stomach pains the last few weeks so maybe it could be that?

Reply 367

Either I've done too much, or I have a bad case of hayfever or a summer head cold. I'm shivery, coldy, and disorientated. I can't focus on anything and feel absolutely wiped. I have done too much me thinks and my body has had enough.

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Reply 368

AMPezza1

Hello!

I've had M.E. for 6 years now, I'm currently in year 13 revising for my A2 exams. I found out a few weeks ago that I'm lactose intolerant, apparently this is quite common for people with M.E. and that some recent research findings on this link have just been published. Hope everyone is coping ok :smile:

Anna

Reply 369

Original post by AMPezza1

Hello!

I've had M.E. for 6 years now, I'm currently in year 13 revising for my A2 exams. I found out a few weeks ago that I'm lactose intolerant, apparently this is quite common for people with M.E. and that some recent research findings on this link have just been published. Hope everyone is coping ok :smile:

Anna

Hi Anna,
I too am gluten and dairy intolerant. Keeping a food diary helps to conclude this. Welcome and good luck with your studies :smile:

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Reply 370

Original post by AMPezza1

Hello!

I've had M.E. for 6 years now, I'm currently in year 13 revising for my A2 exams. I found out a few weeks ago that I'm lactose intolerant, apparently this is quite common for people with M.E. and that some recent research findings on this link have just been published. Hope everyone is coping ok :smile:

Anna

Hello! I also have lactose intolerance but luckily there are somethings I can eat :smile:

Right now I'm snuggled up in bed with about 3 blankets. I freezing cold and exhausted, I've had a really bad cold all week and I've got exams to revise for but I'm just so tired and my headaches are getting worse :frown:

anyone got any suggestions? Xx

Reply 371

AMPezza1

Original post by DollyMaii.x

Hello! I also have lactose intolerance but luckily there are somethings I can eat :smile:

Right now I'm snuggled up in bed with about 3 blankets. I freezing cold and exhausted, I've had a really bad cold all week and I've got exams to revise for but I'm just so tired and my headaches are getting worse :frown:

anyone got any suggestions? Xx

I really love soya milk, almond milk and the alpro vanilla yoghurt :smile:

I'm the exact same I cannot get warm at the moment, I'm living in fluffy socks and dressing gowns haha! I have the same problem exams wise and I know its really hard, but you have to prioritise your health. Getting better is the most important thing because at the end of the day if you get a really bad headache during your exam it doesn't really matter how much revision you did. I hope you feel much better soon :smile:

Reply 372

Original post by AMPezza1

I really love soya milk, almond milk and the alpro vanilla yoghurt :smile:

I'm the exact same I cannot get warm at the moment, I'm living in fluffy socks and dressing gowns haha! I have the same problem exams wise and I know its really hard, but you have to prioritise your health. Getting better is the most important thing because at the end of the day if you get a really bad headache during your exam it doesn't really matter how much revision you did. I hope you feel much better soon :smile:

Thank you, yes I really like almond milk too :smile:

and I know the feeling, I've brought some really nice summer bits like playsuits and flip flops but I'm always too cold to wear them! I am trying to have lots of revision breaks to rest up, I've woken up with a horrible cough so I hope I haven't got a chest infection on the way, that's not what I need right now! Xx

Reply 373

Had a gluten free Victoria sponge but it had whole milk cream filling and didn't realise this till after. In short the Tesco one is ok with no dairy and this one I had today was from m&s. Upset my system no end. My ME is progressing towards Fibro.

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Reply 374

kat91s

11

Hello,

This is my first time posting here, and I wonder if anyone has any advice on how CFS is first diagnosed. Like how long does it take? My GP thinks I have several of the symptoms, the main one being that I've been constantly tired for 16 months, but says that it is too early to say for sure and cannot offer any kind of help for me at the moment.

Thread with the full story here:
http://www.thestudentroom.co.uk/showthread.php?t=2709010

Thanks :smile:

Reply 375

Original post by kat91s

Hello,

This is my first time posting here, and I wonder if anyone has any advice on how CFS is first diagnosed. Like how long does it take? My GP thinks I have several of the symptoms, the main one being that I've been constantly tired for 16 months, but says that it is too early to say for sure and cannot offer any kind of help for me at the moment.

Thread with the full story here:
http://www.thestudentroom.co.uk/showthread.php?t=2709010

Thanks :smile:

Hello there :smile:

depending on your age there are different ways to getting a diagnosis. If you are an adult some local hospital consultants can diagnose it and start treatments. As I was younger I had to see a specialist in London who is still currently treating me.

Unfortunately it does take a while. Everything else has to be ruled out first. I've had CFS for three years and only been diagnosed for one, some people can take longer though. The main thing to do is just keep pushing the GP for referrals! Best of luck!! Xx

Reply 376

Also a quick update for you all. I've been having stomach pain on the lower right side since around Easter time now. I had a pelvic ultrasound done yesterday and it was all clear. My doctor thinks it could just be my bowel getting cramped up as this sometimes happens in other places in my stomach but I'm just wondering if any of you here experience anything similar and what you do to help the pain? Xx

Reply 377

HearMeRoar

17

I just thought I would comment on this thread. I was diagnosed with ME in 2012 and have never encountered anyone else with it; it's so lovely that other people here understand what it's like!

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Reply 378

kat91s

11

Original post by DollyMaii.x

Hello there :smile:

depending on your age there are different ways to getting a diagnosis. If you are an adult some local hospital consultants can diagnose it and start treatments. As I was younger I had to see a specialist in London who is still currently treating me.

Unfortunately it does take a while. Everything else has to be ruled out first. I've had CFS for three years and only been diagnosed for one, some people can take longer though. The main thing to do is just keep pushing the GP for referrals! Best of luck!! Xx

Thank you, that is really encouraging to know. :smile:

I am 22, and it's just frustrating being left hanging indefinitely with no treatment, when even if I don't have a diagnosis I still have to cope with the symptoms. Some days are a real struggle.

Reply 379