Life with fibro

[SD1813]

Hi there I can easily relate to what your all been saying I've been diagnosed for around 4-5 years and still haven't found any middle ground. Dr gave me amitriptyline and codeine was managing okay day to day but weekends I was bed bound unable to do anything. He removed my codeine from my prescription and I really struggled without it I went down ill unable to work so tired and drained to get up and dressed. After alot of phone calls to the Dr's surgery he upped my amitriptyline to 40mg and gave me gabapentin I've just started the gabapentin so unsure whether there going to help. I'm hoping so coz my life has been turned upside down since I started to feel ill. Constant leg pain gets worse on a night the headaches, migraines are endless. IBS is a struggle, I have also started to lose my hair which Dr has said it's the fibro, my memory is really bad that's called fibro fog. The symptoms are never ending easier for doctor to say its fibromyalgia than investagate, I was appointed a new doctor in lock down who suggested I get bloods done the results came back I've also now got an over active thyroid. So if you think you may have another condition please be persistent on getting more tested. I'm also finding hard to work but cant get any help from any one. Hope you get some joy from your doctor more than I have

[Welshcatlady]

Sorry to hear about your experience with your doctor. My lower leg pain used to be unbearable, until I read on here that Magnesium spray could maybe help, so I bought a bottle off Amazon in December and I hardly ever get pain in my lower legs anymore. I use it just once a day after my shower and it's like a miracle. Also a weighted blanket could help, it did for me. However, these things don't work for everyone so it's a case of trial and error. I do hope that you get some relief from your pain soon.

[wiserlady]

i get irritated when anyone who has a long list of or difficult to identify quickly list of symptoms gets told they have fibro. It seems to be it is a cop out, a way of pushing us all into the same box and dismissing us. Sometimes they give us medications which cause other illness or problems but rarely admit to it.

[Keyros]

Hi, sorry to hear you're having problems. I'm new to this app and although I've been suffering from fibro for many years I've only just been diagnosed. I was being treated for CRPS.All I can say is from my own experience my GP says codeine is not very effective for fibro. I was prescribed tramadol, and amitriptyline. I have IBS aswell and codeine does bung you up. I don't have this problem with tramadol, however, I don't take it religiously as I had withdrawal symptoms when stopped the hefty dose I started on. It's all a bit one size doesn't fit all with drugs. I read hear that magnesium spray works well for some people, Sadly it didn't work for me.

I wish you well and hope you and your GP can find the right balance.

[Hidden]

Hi SD1813,

I can sympathise completely with you. I spent years going round and round in circles with my GP, was given a diagnosis and then referred back to the GP for pain control, I was on Citalopram and Gabapentin for 5 years, topping up with Ibuprofen/Parcetamol/and a variety of topical OTC/herbal medications.

I use Yoga stretches in bursts throughout the day to relieve tightness (and get a screen break), I've tried T'ai Chi, swimming also works. I do NHS Active 10, walks in the park, gardening. All depending on how I feel that day.

My turning point came when I was referred to my local Pain Clinic. This is made up of a combination of medical professionals who take an holistic view of the treatment of pain and neurological conditions including Fibro. I am under the physios and the pain nurse, but they also have dieticians, psychotherapists, and Specialists. He changed me off Gabapentin onto Pregabalin which has made a significant reduction to the pain I feel (especially my lower legs) and my sleep disturbance. I actually wake up feeling refreshed some mornings and have more good nights than bad nights now.

As others have said, there is no one-size fits all. It is a case of trial and error, and trying various things. It might be worth seeing if your area has a Pain Clinic, too.

Good luck.

Kaz

[Yassytina FMA UK Volunteer]

Yes differently agree with you ,most doctors would go down the route of blood tests 1st without saying it’s fibro as other things can be picked up like yourself. I hope this new doctor is much more helpful and sorry you experience was not good with the 1st one, I agree with members that it can be trial and error and also getting the right meds to work with your pain xx