Me/chronic fatigue syndrome

sleepymy

Rossatron305 wrote: »

Hi this is my 1st post and i am glad it is here and hope i can help.

i am one of 3 ppl i know with diagnosed cfs, the other 2 being my best mates little sister who had to leave school the year of her gcse's and be home tutored and luckily my managers wife has it also, which means he knows exactly how i feel and has been great help to me, i am currently on my 5 month off work and i am only 20 (21 soon) i find it extremely hard to do anything, have been on more tablets than my 75 y/o nan that has severe diabetes as well as a few other conditions bless her.

one thing that my gp and neurologist recomended was going out more and doing more, i go for an hour walk everyday, live in the country so its not too bad, but even if i return home exhausted i feel like i have achieved something and after a week of doing it i started to have more energy, before i was stuck in my room just on the computer, this really doesn't help and makes you feel depressed, if your son is my age or younger, try taking him out on the weekend, i get severe headaches just being outside but the tablets have supressed that greatly, just makesure whatever tablets they give him they dont make him put on weight, i put on a stone in 6 weeks taking one lot and it just made me feel worse, i am here to help if you have any more questions, Ross

Encouraging someone who may have ME to go for hour long walks goes against all the pacing guidelines. I'd be surprised to find that works for anyone who really did have ME (it's often misdiagnosed). Getting out and about more is encouraged but only within your pacing limits. Pushing yourself until you feel exhausted is not recommended for ME patients.

NEH

absoluteutopia wrote: »

The new DLA cash cow

Guess what i have fibromyalgia and applied for it as my husband was having to help me out with a lot of things, i was advised to appeal but i said i couldn't face months of interrogations....So not everyone who has Fibromyalgia is on it....You honestly think that we would lie and go through medicals and endless form filling for a measly sum a week....???

If you had this illness for a week you would struggle to cope, it's a horrible nasty disease that even when in remission is ever present....

Anyway back to the point i had ME before it was rediagnosed as fibromyalgia, i live in the UK but i was just going to say as someone else said to contact the ME association here as they are usually quite helpful and informative...

pinkfluffythings

I don't get DLA either, so I am not using my illness as a cashcow for DLA. I honestly hate the way there are some narrow minded people on this site that jump on genuine people giving advice.

thetope

I am sorry to hear that your son is suffering from suspected ME. I just wanted to offer my own experience. I suffered chronic pain in all my joints and fatigue for over three years, during which time i had tests and more tests and more tests from the GP including x rays. I was eventually referred to a haematologist then a rheumatologist. The rheumatologist determined that i had fibromyalgia and basically said "there is no cure, but we can put you on anti depressants, which can help". i wasn't terribly happy with the situation, but agreed to start on anti depressants. They didn't help.

Some months later, I developed acute, unbearable back pain and associated sciatica which left me virtually unable to walk. I lived near the ulster spine clinic and called in in desperation, in the hope that they could sort out the sciatica (had visited a chiro some years previously pre-fibro and it had helped then so i thought it might help again. I underwent more x rays and was very surprised indeed to find out i had quite a significant scoliosis/abnormal curvature of the spine (especially since the nhs had also xrayed me with no apparent results). it was so pronounced that even i could see it in the xrays.

so... i decided to commit to a course of treatment. i won't gloss it over, it was expensive, intensive (3 times a week traction, physio and chiropractic for 9 months) and although the cost was partially borne by a cash health care plan, it left me in debt. But, after only a couple of weeks the difference to my pain levels was amazing (which left me in no doubt i should carry on, regardless of cost) and once the main course of treatment was complete, my spine had been significantly straightened (again clearly visible in x ray, so not placebo effect) and virtually all my pain and fatigue symptoms were gone. At the time, the chiropractor (an australian) said that fibromyalgia and ME are virtually unheard of in Australia which he attributed in part to the sunshine (FM and ME are often associated wtih vitamin d deficiencies) and in part to a more widespread integration of spinal health into their healthcare system as poor posture or abnormal curvatures can cause nerves to be pinched leading to widespread pain. Whatever the cause, it worked for me... So if you are at your wits end, I would not rule out a spine check.

NEH

thetope wrote: »

I am sorry to hear that your son is suffering from suspected ME. I just wanted to offer my own experience. I suffered chronic pain in all my joints and fatigue for over three years, during which time i had tests and more tests and more tests from the GP including x rays. I was eventually referred to a haematologist then a rheumatologist. The rheumatologist determined that i had fibromyalgia and basically said "there is no cure, but we can put you on anti depressants, which can help". i wasn't terribly happy with the situation, but agreed to start on anti depressants. They didn't help.

Some months later, I developed acute, unbearable back pain and associated sciatica which left me virtually unable to walk. I lived near the ulster spine clinic and called in in desperation, in the hope that they could sort out the sciatica (had visited a chiro some years previously pre-fibro and it had helped then so i thought it might help again. I underwent more x rays and was very surprised indeed to find out i had quite a significant scoliosis/abnormal curvature of the spine (especially since the nhs had also xrayed me with no apparent results). it was so pronounced that even i could see it in the xrays.

so... i decided to commit to a course of treatment. i won't gloss it over, it was expensive, intensive (3 times a week traction, physio and chiropractic for 9 months) and although the cost was partially borne by a cash health care plan, it left me in debt. But, after only a couple of weeks the difference to my pain levels was amazing (which left me in no doubt i should carry on, regardless of cost) and once the main course of treatment was complete, my spine had been significantly straightened (again clearly visible in x ray, so not placebo effect) and virtually all my pain and fatigue symptoms were gone. At the time, the chiropractor (an australian) said that fibromyalgia and ME are virtually unheard of in Australia which he attributed in part to the sunshine (FM and ME are often associated wtih vitamin d deficiencies) and in part to a more widespread integration of spinal health into their healthcare system as poor posture or abnormal curvatures can cause nerves to be pinched leading to widespread pain. Whatever the cause, it worked for me... So if you are at your wits end, I would not rule out a spine check.

ME is widely heard of in Australia, not sure if you will be aware of it but the sheep farmers were sometimes diagnosed with ME due to the chemicals used in sheep dipping...There is a national ME society over there as much as there is here and fibromyalgia is also known over there.....The chiropractor in my opinion is talking rubbish otherwise there wouldn't be the need to have the societies over there....if you google ME or fibromyalgia Australia as a start you wiil get several links....

I do however believe in chiorpractic treatment, it does help with some of my fibromyalgia pain due to a pelvic girdle i have that keeps going out of place affecting my spine. I am also one of the ones for which heat and sunshine does help but there are a few ME and Fibormyalgia people i know for which heat and sunshine makes their symptoms worse so it can swing both ways...

Rossatron305

sleepymy wrote: »

Encouraging someone who may have ME to go for hour long walks goes against all the pacing guidelines. I'd be surprised to find that works for anyone who really did have ME (it's often misdiagnosed). Getting out and about more is encouraged but only within your pacing limits. Pushing yourself until you feel exhausted is not recommended for ME patients.

Didn't say i had ME though did i, i am just going on what my dr and neurologist told me, getting out really helped me, and is still helping me

sleepymy

Rossatron305 wrote: »

Didn't say i had ME though did i, i am just going on what my dr and neurologist told me, getting out really helped me, and is still helping me

You said you have cfs, which is the same thing?

Mojisola

I find Dr Myhill's site very useful - https://www.drmyhill.co.uk/wiki/Category:Fatigue

She has a lot of free information about ME and you can download her treatment protocol for free - https://www.drmyhill.co.uk/wiki/CFS_-_CFS_Book_published_by_Dr_Sarah_Myhill

The national organisations also have useful information - https://www.afme.org.uk/ and https://www.meassociation.org.uk/

Definitely make sure that the doctors eliminate other possible causes of his symptoms before settling on ME.

booklover

Thanks everyone for all your very helpful replies.

Will update tomorrow as having a bad night tonight....

Fiona