Hi, I have an appointment tomorrow with a new GP who I think might be more open to discussing any help I can get. I'm hoping for some good questions to ask, please.
I'm on amitriptyline & sertraline, which aren't helping. I've had co codamol, which bagged me up & I didn't like.
They diagnosed me with fibromyalgia & basically said nothing really works, hence I've asked to see this guy as I've seen him before for something else & he seemed nice.
I get muscle knots all the time & I've seen mention of Myofascial pain syndrome, which sounds more my issue - except there's also a lot within fibromyalgia that describes me too. Is it possible to have a mix of both?
I think I need something to relax my muscles, help with pain & also the anxiety/depression/tiredness that comes with it.
Sounds like I'm asking a lot & I doubt anything exists to cover it all.
Any suggestions? I'll now try other meds, as these were the first I'd allowed myself to try, after battling for years on DIY treatments.
Needling to unspasm the muscles?
Acupuncture?
Gabapentin?
Pregabalin?
Duloxeline?
Any advice most welcome & thanks! 💚
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cosmondo
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I can't tolerate prescription meds so rely on other methods. Have you considered chiropractor treatment. If you do please do your research and make sure that they understand and appreciate the unique problems fibro throws up. Took me quite a while but I am really satisfied with the one I have now who takes time to assess before treatment each and every time. I have also found gentle stretching and heat pads help along with warm epsom salt baths. I know others say Tai Chi helps too. I wouldn't be without my hypnotherapist either - not for everyone as one can feel quite vulnerable whilst being treated but again I did alot of research and visited several for free first sessions before I found one I was comfortable with. I did try the spinal injections but have to say they had zero effect except for the one in the back of my head which stopped the migraines for months.
Have you asked for a referral to the Pain Clinic - worth a shot, and/or one of the fibro clinics dotted around the country. I went to the one at Guys and St Thomas's. Very interesting, a one off appointment where you will see several specialists, I saw a physio, psychologist, rheumatologist and one other and together they put together a plan of action for my GP.
Diet has played a big part for me. Not proven anywhere that it helps but I know from experience that if I stray from the no processed foods path I pay for it later.
Good luck I do hope you get the desired result from your appointment.
It sometimes takes years to find the right drug or combination of drugs. It’s tricky as fibro is so different for all of us. Agree about the silver bullet- all drugs have their pros and cons.
I found hydrotherapy helped and Preablin helped bring down the vile, burning electrical type pains I was getting. I honestly couldn't do without cocodamal.
I think you have to try various medications as one doesn't fit all. Hope the session is productive.
perhaps try something like Tuina which is a gentle form of massage. I used to have this at the Chinese clinic and it did help.
Please avoid duloxetine if possible it’s a horrible drug. The withdrawals when trying to come off this are horrendous.
I have used both prcegablin and gabapentin and both worked for a while but I think your body gets used to them after a while and they stop being affective. But everything works different for each patient.
i agree don't take duloxetine, when I took it had constant headaches but dr still pushed me to take it for a bit longer to get use to it but after trying for a bit more I stopped but side effects even worse coming off it not easy slow process .
I now only take vitamins and strong cbd patches for pain management because none of these meds works and if you do research now saying most of these meds are dangerous to take in the long run because they increase the chance of dementia.
Try to find the other methods, me taking different vitamins and they are alot of them helped. But everyone different.
Hi, I have been a fibro fighter for over 30 years. Been given various pharmaceuticals and sorry to say not helpful. Tried lots of alternative therapies. Been to pain clinic too. What has helped me is having a referral to a health/ excersise programe. Tai chi, gentle circuits, gentle swim all help. I find having a higher protein diet, low carb diet helpful. The drugs made me feel worse, more lethargic and depressed, didn't help with pain and I gained weight. GPs put me on tramadol, gaba, amitrptyne,morphine etc etc. Had lidocaine infusions and surgery where they burn nerves between my vertabras. Steroids. Nothing worked.I have found taking a low dose of citalapram, paracetomol a healthy diet and gentle excersize has made a massive improvement. It was hard at first but has gradually got easier. I no longer need a walking aid and excersize most days.
I also have massage when I can afford it and take a session in a somadome . I am in UK and apparently there are only 3 somadomes in the country.
In answer to your question, I have fibromyalgia and myofascial cervical pain. Recently I had a number of steroid injections into my neck, they have worked wonders. I am due to have more in a few months.
I have to say these injections are a bit painful but the benefit for my neck was well worth the pain.
For the pain caused by fibromyalgia I have a deep aromatherapy massage every month, it helps relieve the pain and stiffness in my upper body.
It’s tricky to advise anyone about meds as one person can do well one one and another person can find it doesn’t work. I have the muscle knotting symptoms v badly and for me Duloxetine works beautifully - after a hairy 6 weeks of being spaced out and sleepless it clicked in overnight. Others will tell you it did nothing for them. That was me on Amytriptiline.
Duloxetine has also helped me with the significant anxiety that I have had since my 20s (I am now 56). I no longer feel wired - it’s probably reduced the fight or flight response to constant pain.
I take the lowest dose, 30mg a day on the morning. I think it’s also helped with sleep.
My friend swears by Pregablin…
I would avoid a chiropractor as afterwards you can seize up completely? I can see others find it helpful but for me, with the muscular over-reaction I get, it made me v unwell.
You're very lucky to see a GP. Our surgery just does computer or phone contact. Make the most of it and take in a written list of all your questions and don't budge until you get some kind of answers. Good luck and hope it goes well.
If you ask your GP to many questions they tell you that they can only deal with one issue per appointment.So many issues could lead you to many many future appointments,that's if you can get one.
All GPS triage folk to see what issues are most important,so anything fibromyalgia goes to the bottom of the pile 😞.
l use self help for myofascial pain ( yes also have fibromyalgia). The Trigger point Therapy workbook is really good and I use a Theracane for massage, tennis ball against the wall and physiotherapy on and off for deep tissue massage and acupuncture. I can only get nhs acupuncture for my migraines now though. I avoid most prescription meds, just Sumatriptan for migraines, vitamin D and ibuprofen.
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