Lack of treatment

[helenatruralhome]

I've suffered from 'M.E' since 2008/09 and have really struggled to get any sort of treatment despite being in severe agony (so much so I actually discussed having my legs amputated and my partner would have to physically stop me going to our workshop and getting a saw and doing it myself) and also constant nausea and vomiting.

I was diagnosed by a geriatric memory clinic specialist (I was 24 at the time) who suggested anti-depressants. After diagnosis I went back to my GP who refused to help me. He wouldn't give me any medication to help with my symptoms as he said there was 'no treatment for 'M.E' other than CBT.

It was only by chance 2 years later that I managed to see a GP registrar while my own GP was on holiday- she firstly tried to refer me to an M.E clinic outside of my NHS trust (which I was refused) and then referred me to a pain specialist who checked my psychological 'background' to see if there were any psychological reasons for my condition. He did not find anything to suggest it was anything other than physical disability and after that tried to find a balance of medication which would ease my symptoms with minimal side effects as I can have increased sensitivity to analgesics.

After a lot of trial and error I'm now taking nabilone for pain and nausea, oxycontin for pain and cyclizine to combat the nausea from the oxycontin. The oxycontin doesn't help with the severe bone pain I get (it feels like my legs are in a vice and the long bone - not the joint- is about to snap, although the actual leg itself isn't tender and can be moved without adding to the pain) but it takes the edge off the all over body aches I get.

Despite all this I'm actually an incredibly happy person- I certainly don't have depression and am generally happier now than I've ever been but my comment/query is

what other analgesics are available to treat bone pain? I've tried pregabalin, gabapentin, tramadol, tapentadol, etc- would morphine be worth trying?

Also- why can't GP's or medical professionals treat the symptoms? as with other conditions- they can't treat flu but they can treat the symptoms so why as an M.E sufferer are we left to suffer with our condition on our own.

[ladynoodle]

Hi there

I am having the same problem with my gp's. They just keep telling me there's no treatment but I am in awful pain and can totally relate to the leg bone pain. I am currently taking over the counter meds to help pain but I worry about long term side effects and addiction. I really do not know where to go for advice and support.

[Dr Charles Shepherd]

Helen

Without having a better understanding of the underlying disease process in ME/CFS (and research is now providing some important clues regarding abnormalities in muscle, brain, immune system etc) we don't yet have a safe and effective drug treatment for people with ME/CFS. But things are slowly beginning to change with clinical trials assessing drugs such as Rituximab.

In the meantime drug treatment has to be aimed at producing symptomatic relief. And there is a lot that can be done to help key symptoms such as pain, sleep disturbance, and (where it occurs) depression.

There is also a lot of non-drug management advice that can help with symptoms such pain, sleep disturbance, muscle fatigue and orthostatic intolerance (feeling faint or unsteady when standing)

The new (2013) 52 page edition of the MEA booklet - ME/CFS/PVFS: An Exploration of the Key Clinical Issues - covers all the research into new drug treatments, and summaries key aspects of symptomatic relief. We also have information leaflets covering the management (drug and non drug) of all the main ME/CFS symptoms: muscle fatigue, pain, sleep disturbance etc.

Dr Charles Shepherd
Hon Medical Adviser, MEA

[kittycat2000]

Hi Helen, the pains in your legs sound similar to mine, I feel as if someone is smashing my shin bones with a sledgehammer. As well as taking painkillers I use epsom salts in the bath and then have arnica oil massaged into my legs. I then find wearing stretchy compression bandages for a few hours helps with the shaking and pain. I tried morphine patches but they gave me terrible mood swings so I had to stop using them.

[helenatruralhome]

I tried Butrans patches but I was ill for 3 days when I tried them but I haven't tried morphine- I've tried most other things and I am desperate to ease the pain- it's just weird as I can move my legs and even hit them and it doesn't make the pain worse as the pain is like it is in my bones...

[Bluebottle]

I hope you have already been tested for hyperparathyroidism which causes pain in the bones; I had this as well as M.E. and it is treatable.

[helenatruralhome]

I had a standard thyroid test when I first became ill and I was bang smack in the middle of normal for that but my cortisol levels were on the lowest side of normal and my testosterone was high. I also had a test for addisions and cushings which came back normal too..