Pain clinic/muskoskeletal services advice for CFS/ME?

Hi, thank you for your reply. My pain is muscle pain/joint/back/neck and headaches. At the moment my GP has put me on liquid morphine for days where I can no longer cope and a few weeks ago started gabapentin so I'm not too sure what the pain clinic or private chronic pain specialists will have to offer just wish I could find out some more information about what they offer. I recieve DLA and PIP also.

It was very helpful thank you. Just feel like I'm stuck in mud at the moment. 

Thank you very much. 

Emily x

Also i was lucky enough to get diagnosed by my GP who then referred me straight to a cfs/me team in my local area, although I was only 16/17 so they ended up referring me to an immunologist who diagnosis ME/CFS. If you wanted a diagnosis from someone other than your GP I'm sure if you pushed hard enough they'd refer you to a specialist for more tests and diagnosis? 

Thanks for the reply Emily.  I was diagnosed in 2007 though have had to change doctors twice since then - also, I live in Scotland where there aren't many specialist ME/CFS clinics and certainly none in my area.  I was also recently prescribed Gabapentin because I have really bad peripheral neuropathy which is partly caused by CFS/ME and partly diabetes.  I must admit for this type of pain it is working for me though I am a bit zonked on it.  I take 300mg a day.  I have had my meds changed a lot recently.  I was taking tramadol for a long time and it worked really well for me then it was re-categorised.  My GP took me off that as it is no longer recommended by NICE as a long term pain relief solution.  I also was taking amitriptyline but that also was stopped.  I have some liver problems which are being investigated which may be sarcoidosis (which I also have) so pain relief at the moment for me is codeine which I will also be taken off soon!  I think when you have had something for a long time the medications can affect you more than help which is what my GP is saying. C'est la vie.  As for the pain clinic they discuss your meds and try to give you coping strategies for the pain.  I didn't really rate the one I was sent to but I think the main problem was that the person I saw didn't believe in ME/CFS as a genuine physical illness.....and also, the number of people he was dealing with made it difficult to get a good level of service.  I was sent back to my GP eventually with more medicine suggestions and a referral to physiotherapy.  I hope you have a better service than I received (it wasn't their fault - too many people to deal with).  I did think it was useful but had to stop going after a while because it is a morning clinic in a hospital nearly 20 miles away.

I am sorry you have been ill with THIS from such a young age but you certainly seem to be proactive in your care.  Unfortunately we don't often have the energy needed to insist on the care we need and eventually, when there is nothing left to try or test you sort of fall through the cracks.  I've had 2 rounds of seeing all sorts of specialists and am in my 3rd round.  About once every 3-4 years someone sends me for all the checks again.  Still, however, hoping that at some point I will be well again and I continue to read up about treaments and advice so I haven't given in.

I'm so sorry that you've had it such a long time! I think it's so awful the fact that there are barely any ME/CFS specialists in the UK (saying that I don't even think there is anybody in the UK who just focuses on ME/CFS which is such a disappointment) 

I'm happy to hear the gabapentin is working for you, I've yet to see a difference as I'm still increasing my dose but I'm keeping my fingers crossed. 

I really hope that the clinic isn't too bad and I'm sorry that it didn't work too well for you, there's always one ignorant person who doesn't believe ME/CFS is physical. I used to see ME/CFS team at my local hospital and I dreaded it and they couldn't recommend medication so I felt like I was being passed from them to the doctors all the time. 

I'm 19 now so I'm very lucky that my mam and dad help me with my care and doctors appointments, they give me a voice if I can't manage to fight for myself which helps a lot. I'm trying my best to be proactive and trying to find things that helps but it's such a vicious cycle, I'm trying my best to do some research about doctors and different treatments but I'm really struggling to even do that at the moment. 

I'm happy to hear you haven't given in, I haven't either! I'm just hoping at some point in the near future they find a diagnostic test and a treatment for it, I'm not saying it needs to be a cure but any treatment is a step forward compared to the recomended CBT/GET that we have now. 

I hope you are doing well and continue to do so and if not don't worry because we will all get there eventually  

Also thank you so much for the advice,I know it's tiring to reply and I really appreciate it. 

Hi emily

I'm very sorry to hear you've got CFS/ME. however, it's good to know that you're being promptly referred to the appropriate experts in the field.  as you probably know people who get an early diagnosis and early interventions have much better  outcomes than those who don't.  I'm wondering Emily, if the Immunologist is a member of the CFS/ME team? I had no medical input when I attended the ME/CFS clinic.  in fact there was  no medics on the CFS/ME team that I attended. there was only the Clinical Psychologist who had minimum input, a Physio and an Occupational therapist.  I do hope the CFS management program helps you. 

with thanks

C

Hi, 

When I went to the local CFS/ME team (think it was about 2/3 years ago now) I only saw the pshycologist, physio and occupational therapist (if I remembered correctly) I went to my first meeting with them and they weren't overly keen to diagnosis me (I'm not sure if it was because I was young or because they preferred me to get some more tests done) they referred me to an immunologist at a different local hospital (completely separate from the cfs/me team) and it was him who did some blood tests etc and gave me a diagnosis, but I know I'm very lucky to have that immunologist in my area as he knows his stuff about ME/CFS. I have read that some people get referred just to the me/cfs team if the team are sure it's ME/CFS or there isn't a immunologist near you. I really hope this helps. 

Thanks for the reply 

Emily 

Hi emily.

thank you for responding with that information. that's helpful. it seems that you were just lucky that that there was an accessible Immunologist available.  when I read your post, I thought perhaps there was now an Immunologist on the ME/CFS teams, which I think would be an excellent idea and very reassuring for ppl with ME/CFS. sadly that's not the case. I do hope you're making progress emily.  I don't think I'd have handled this condition very well if I got it as a young person. I'm sure,  you're also aware that younger ppl with the condition have better outcomes, together with having an early diagnosis and interventions.

take care

C

Yes I think I was just very lucky. I agree I think it would be a brilliant idea to have an immunologist as part of the cfs/me clinic, I think it would help people a great deal and also they wouldn't need to go back and forth to the doctors for medication or blood tests. At the moment I'm sort of stuck in the mud, I started making progress but at the moment have had a massive setback but I'm just trying to push forward. I'm lucky in the sense where I'm very good at managing how I feel and coping, I can get very upset from time to time but just got to remember that it can get better. 

Yes my immunologist told me since I'm young I have a good chance at recovery, I got diagnosed very quickly but after that I was left to fend for myself. I'm lucky that now I'm doing as much research as I can so I can fight for things that might help me manage this. 

I hope you are doing okay and thank again for the response it's great to speak to other people with the same condition and try to help each other 

Emily