Our medical adviser, Dr Charles Shepherd, writes:
I am in the process of preparing a new MEA Management File on the prescription-only pain-killing drug called Lyrica/pregabalin.
I would be interested to receive feedback – positive, negative, neutral – from anyone with ME/CFS who has used this drug for pain relief, as well as what sort of pain – muscular, joint, nerve – it helped/did not help to relieve.
Comments can be placed on our website or Facebook page, or can be sent direct using the ME Connect email address: meconnect@meassociation.org.uk
The September MEA website quiz is on the subject of pain relief. Please cast your vote if you have not already done so.
Website poll results so far:
The MEA Quick Survey
What is the most effective treatment you have used for pain relief in ME/CFS?
acupuncture (4%, 9 Votes)
amitriptylene (10%, 22 Votes)
aspirin (1%, 3 Votes)
gabapentin/Neurontin (11%, 24 Votes)
pregabalin/Lyrica (7%, 15 Votes)
ibuprofen/Brufen (8%, 17 Votes)
paracetamol (5%, 11 Votes)
strong opiate (11%, 23 Votes)
TENS machine (0%, 1 Votes)
tramadol (14%, 29 Votes)
other (29%, 56 Votes)
Total Voters: 210
Thanks for your help.
Dr Charles Shepherd
Hon Medical Adviser, The ME Association
I have been diagnosed with Fibromyalgia in 2002, and have dealt with several gps since then, none of whom will take discuss ME with me, although my symptoms fit the Canadian criteria. I am only treated for Fibro because a Rheumatologist confirmed the diagnosis in 2007 with a very quick exam of the tender points. When I mention other symptoms besides pain, my doctors ignore me and will only discuss pain or emotional causes or tell me to get out of bed and try to exercise more. I am 98% bedbound for the past 2 years. I was prescribed pregabalin in 2011 after begging my gp for it and being referred to the local hospital pain clinic, where the consultant quickly gave it to me. The only thing it has really done for me is help me sleep. I can usually get 5 or 6 hrs sleep a night, but I cannot get much pain relief, and when I ask for help with this, have had the dosage increased repeatedly to current 600 mg a day, plus additional co-codemol, baclofen, and nitromin as needed. No other testing is offered to me. I have been repeatedly encouraged to go on antidepressants despite having previously tried several and not finding that they helped at all. I had intolerable side effects with some. Since starting the pregabalin I have gained almost 3 stone, despite eating more healthily and cutting back on sugar, etc. Aside from the weight gain, I do not believe that I had any other side effects from pregabalin. I have asked for other pain medications but was only offered tramadol to which I had a severe reaction after one tablet. I do not know what else to do as my doctor will not discuss ME and the local rheumatology clinics only prescribe GET and CBT for that anyway. I am unable to afford the level of care that I need to be healthy, so because I have no carer and only low levels of DLA and ESA, I must do more self care than is good for me. This results in a flare every time I take a bath, for example. I realize this is more than you are asking for, but perhaps it will help in some way.
Thank you. I’m forwarding your feedback to our medical adviser via meconnect@meassociation.org.uk
Mmmm. I feel so low when I read comments on this site. Anyway Dr Shepherd, I have taken both Pregabalin & Gabapentin. Neither of them have affected my pain levels at all. Neither joint or muscular, nor what I call nerve pain, which is a burning pain with explosions, lightning etc.- a real fire storm all over my body, which lasts about 5 days & utterly exhausts me. Actually, nothing I have taken ever, has helped with pain. But, I have had medication induced anxiety (seemingly caused by Citaloprim, which I am in a long, slow process of discontinuing), & now I do find that Gabapentin is helping me relax. It never did before when I was taking a higher dose of Citaloprim. If I have a ‘firestorm’ in my body & take 2 Gabapentin, I will sleep for around 6 hours without waking. This is unusual for me as I normally waken every 3 hours. However, I do not want to take more than 3 Gabapentin daily. I was taking 7 daily a couple of years ago & felt I was being dragged down, down, down & then had to go through the hell of reducing the dose. I also went through hell changing from Pregabalin to Gabapentin – I probably did not need to change medication, but no-one knew why I had anxiety, so I was taking the maximum dose of Pregabalin – with no effect. Hope some of this ‘waffle’ may help you. Thank you for your work & care.