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frustrated with lack of treatments

Oct 05, 2014 4:35 AM

I wondered if anyone else has been frustrated with the lack of treatments. I am newly diagnosed with ME CFS and I am so upset with the length of time it will take for me to receive any treatments. For the last 3 months my doctor and I have been discussing pain management clinics and she has been eager to refer me, but had to woit for the letter from the Rheumatologist before she could. The letter took over 2 months to be sent! The doctor has made the referral and now I have to wait 3 months before my first treatment.

I have been suffering from the condition since January this year, so my the time I see anyone in the pain management clinic it will be January next year! I am on so much medication each month when I go and get it the pharamcy give it to me in a massive carrier bag!

I am a cup half full kind of guy, and try and be as optomistic as possible, but this is really testing me. I have not been able to work for the last 4 months and have been signed off work until the end of the year. All my hopes have been on the appointment with the pain management clinic, but that is now such a long way off.

Sorry for ranting, but I am so FRUSTRATED. As I am not working I can not afford to have any private treatments done. I have previously tried Acupuncture, physiotherapy and seen a chiropractor, all very expensive with little improvement. I do stretching exercises and have various instruments to massage my legs, neck and shoulders, so I feel I am doing all that I can for myself.

Does anyone have any suggestions af how I can speed up the time it is to see someone in the pain management clinic or is there anyone in a similar situation?

I hope you are all as well as you can be and hope by sharing we can help each other.


Oct 05, 2014 6:43 AM

I'm 18, been suffering from M.E/CFS for 6 years now, it's ruined my life. I had to drop out of school around the time of my GCSE's which were crucial, I lost all of my friends because they couldn't understand, and most days I struggle to leave my bed/house. I'm still yet to receive any kind of help at all. Doctors just don't know what to do with me, basically. I feel like I've just been left to rot in my own illness and pain, when I should be planning and looking forward to the rest of my life.

I feel your pain, but just keep going, keep strong. Because it honestly does sound like you're getting somewhere with this.. and relatively fast. I know it doesn't seem fast, but stick it out.

Sending hugs and well wishes to you. xx

Oct 05, 2014 6:44 AM

ps. what medication are you on if you don't mind me asking? because I've never been given a thing. other than antidepressants.. x

Oct 06, 2014 4:13 AM

Hi taylor26, I would suggest you go back to your doctors and demand you be referred to Rheumatology department of Neurology. I had to battle so much to get these referrals. In the end I requested to see a different GP as the one I was seeing was not taking me seriously. My symptoms grew very quickly and i was scared the Gp I first saw was not understanding the extent of what was happening. Luckily I have a friend who has Fibromyalgia, so I was able to get guidance from him as to what I should be asking for.

I am on various tablets which are 4000mg Zapain - pain killer but this only helps a little but for me is the best i have tried. My GP wants me to be on Morphine but I have refused. 200mg Sertraline - anti depressant, this is the highest dose to be taken and while it helps I still get low days. 1080mg Mebeverine - this helps my stomach as I also suffer from IBS, and this helps digest all the medication. 7gms Fybogel - this is a husk drink which again helps my stomach 2700mg Gaberpentine, this helps with the symptoms.

I have to say mothing I have tried stops the pain and exhaustion. It does make it a little easier to manage and without it I think I would end up in bed everyday. I still can not work with these medications and have to really pace myself everyday. When I feel I have had enough I have to stop.

I truly hope you get the help you need. If yoru GP is not helping you, get another. If that does not work I would get to the A&E department and see what they are able to do. Sometimes going to A&E is the quickest way to be seen.

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