M.E./CFS sufferers, I have some questions please.

[CrapBag]

I have had it for about 10 years now. I've tried CBT which was a total waste of time. I had group sessions with an OT which was helpful to learning a bit more about it, but nothing in the way of treatments. I have been on amytriptyline in the past to help me stay asleep but it makes me so groggy in the mornings that since I have had DCs I don't take it anymore.

Apart from that, nothing. I haven't been to the doctors about it in years. I haven't been to my new surgery about it at all (been with them for nearly 4 years). Do you regularly go and see if there is any more they can do?

People ask me what can be done and I always reply "nothing" and just get on with it but reading another thread the other day made me wonder, are there tablets or things I could try to give me more energy/to make me less tired in the first place or to minimise the aches and pains after any sort of activity?

Also has anyone applied for a blue badge or is anyone registered disabled?

I have not and am not. I can't work and I have been on IB for a number of years now. I also get the lowest rate care of DLA but nothing for mobility even though on a bad day I can barely walk, but because it fluctuates so much and I live within the limits of my illness it doesn't happen very often. I actually thought I wasn't as bad as I thought until I went away with my friends a few weeks ago. We went out the first night. I did dance (alcohol numbs the pain until later) but I was only out for 2 hours, but then there was all the walking around I had done in the day, looking for our accommodation etc etc. I was crippled the next day and whilst all my friends had had a couple of hours sleep and all done far more than me, they all went out for a walk, on rides, out for a meal. I just laid on the sofa all day just so I could go out the following evening, then spend the following week hobbling about and doing as little as possible. It has only been today (2 weeks later) that I have been able to do some housework. It hit me how little I can actually do and it was the first time that my friends saw me on a 'bad' day and they were pretty shocked.

I hope others can share their experiences too and answer my questions. I am always moaning at my nan because she doesn't like taking too much medication for her arthritus and I say that if it means she can get about more, then surely it is worth it. Then I realise that I am exactly the same and I dont like taking things, but if it improved my quality of life, then of course it would be worth it.

Also does anyone occasionally use a wheelchair? The only time I ever have is when I was pregnant and had SPD but my friends said the next time we go away, they will hire one for me so I can go out and about with them in the day (I did feel horribly left out). I feel stupid for thinking about using a wheelchair but it has to be better than sitting in the apartment? Also when me and DH go in town or take the kids out, I get tired and achy very quickly and it takes days to recover again. Would it be worth using a wheelchair on these occasions just to get out and do a bit more? I went food shopping with DH recently and I collapsed on the sofa when we got home and it took me nearly 3 hours to get the energy to get up again.

This illness really does suck. I am 30 years old and feel like I have the body of a very old person.

i am at about the same level as you op. i have had it for the same amount of time but am older - 45.i don't bother my gp either as i have been told there is no cure/treatment etc.
i find mornings are best forgotten tbh that;s when i get some extra sleep as i am awake most of the night.i can manage about 2 hours light activity most days which involves being driven a short distance out for a drink/lunch and maybe a short burst of shopping.
i have gone away for short holidays but it really is hard work.
wheelchair is a personal choice but i find if i don't go out and try to do some activity then i almost have to start again iyswim so i chose not to use one.
i know of lots of people who have tried and are trying different treatments but tbh they don't seem any better off than myself.
you are correct it is a rubbish illness.

I'm sorry you are both suffering. Does dr myhill hold much weight in the world of me/cfs? I like her website but use it for info on hypothyroidism but I like her theories on blood tests and supplements
I have a friend who is fully recovered after 10 years - there is hope!

DD1 (23) has CFS (was originally diagnosed with FMS but it was reclassified about 8 yrs ago for some reason). She too has found that amytriptaline did nothing but make her zombie-like. She has found that Pregabalin seems to help reduce her pain and the frequency of her 'flares' - she still has pain but it's more manageable. She also found that cutting dairy and gluten out of her diet helped, but she managed to stick to it for 18 months before she missed butter, toast, tea cakes, Jamaican ginger cake and lasagne too much! She loves food and cooking and said the increased pain was worth it as the gluten free bread and cakes NEVER tasted good enough, even when she baked them herself.

She rarely visits her GP for her CFS as she knows there's nothing they can do for her. Her last visits were because she was looking into potential drug treatments and demanded to be put on Pregabalin to see if it worked for her, and to ask for tramadol for when the pain was just unbearable.

She has had a blue badge since she was about 10, not registered disabled though (I'm not sure you can anymore? I think you can only register as blind/deaf now, or be receiving DLA IYSWIM). WRT a blue badge, ask for an application form from your local authority and find out what information you need to supply - I know our LA wanted details of DDs doctor so they could ask for a report, and her most recent one asked about DLA, but this may be different for different LAs.

When she was younger (between 10 and 14) she would regularly use a wheelchair for school or going to cinema etc. with friends, but would force herself to try the best she could without it even though it often resulted in her being unable to get out of bed for several days. However, if you know a wheelchair is going to help prevent you from days of pain and exhauston, by all means use one!

Her fatigue is terrible; she's the only person I know who could sleep for 15hrs and wake up tired and it's the only thing she's not been able to alleviate.

It really is "truly sucky" as my DD would say.

I use a wheelchair.

I am hoping the research into Rituximab will pay off. It is a drug used for Rheumatoid Arthritis. It fixed 2 out of 3 ME patients in a Norwegian trial.

www.investinme.org/IiME%20Conference%202012/IIMEC7%20Agenda.htm#Olav

Brilliant! Let's hope so. Is also used for autoimmune kidney conditions so maybe will hold hope for a range of autoimmune conditions?

mercibucket - I think getting funding for the necessary larger trials is hard. www.investinme.org/InfoCentre-Library-NMEA-Newsletter-1203.htm

I have also read that Rituximab has helped with multiple sclerosis. If you google multiple sclerosis rituximab there are lots of results about it.

i HATE having ME. been to londin for two days with kids, 1st day wasnt too bad but was in bed by 8.30 second day we booked hop on hop off bus to reduce the amount of walking we had to do. by 5pm i could have cried i was so tired, and in pain, managend to last till 6.30, had some tea and was in bed by 8pm. Kids really dont understand! since i got back i have done as little as possible but i know im going to crash in next week or so.

I applied for disability allowance and blue badge and was refused both...so as a single parent i have to work. I recently started a new job (30 hours A week!!) I really dont know how im going to do it...i work all week and sleep most of the weekend (whilst kids are at there dads.) I am at my wits end. need a job with less hours but there is none, need a life need my body back!

tonight is my friends 40th...im obviously not going, because the thought of going out terrifies me.... because i already know im in debt for the 2 days in london....not only that i look like shit!!!

amitriptyline is my very last choice when i cant control pain with anything else. i do take zopiclone to help me sleep, and it gives me 6 hours from when i take it!! which was better that the 2 i had before, thing is i am now reliant on it (not a good thing)...

so guess we are all in same boat.... its crap int it!!

Hi, I don't have ME/CFS but I care for my hubby who does. He is 29 and was first diagnosed new years eve 2008, it went away but has come back with a vengeance. Hubby has DLA highest mobility and lowest care (which we will be hopefully changing) He did have to appeal though- anyone I know who is disabled HAD to appeal their first application!!
He has walking sticks purely due to his ME/CFS (he does have other problems too- a lot but these have mainly come out in the past year or so) and he has also been prescribed/issued a wheelchair which we use when he really can't cope with sticks.
He also has a blue badge.
I spoke to the social services care sector and they sent an OT out to give him everything he needed- they are really helpful and also they offer a support buddy to your carer if you have one.
He now has a comode, a bath lift, a special rail around the toilet, new hand rails (but we also keep a fold up bed downstairs) There is a lot of help if you push for it... he also goes to ME clinic for one on one sessions, but I know these are only short courses.
Also I know it's changing but ESA is another one to apply for, after hubby was medically discharged from his employer he went onto ESA, had a medical assesment etc. But look on direct.gov for any information.

DH is on a stupid amount of pain meds but as I say he also has numerous other health problems, but other than that and now this ME clinic who are trying to get him out of the "boom and bust" cycle, we can only try and manage it, which is pretty damn impossible.

I can't imagine what any of you go through- obviously I see it with my hubby but you are all inspirational! I hope some of this has been helpful xxx

I came across this thread whilst doing some ME/CFS research and felt obliged to mention the latest treatment I have been having as its the only thing that has helped in 6 years. It was recommended to me by another ME sufferer as somewhere that truly understands this debilitating illness, probably because many of the clinicians have had, and recovered from ME/CFS themselves. This is the link to the Optimum Health Clinic:http:freedomfromme.co.uk/

I started treatment cynical that it could help but after only three months I am starting to see results, so I wanted to share this information in the hope that they may be able to help other Mummies and Daddies.

I wish you all the best of luck.