I have recently been diagnosed with Fibromyalgia but it took a long time to get here. Heartening to find this group and see so many people mentioning so many of my symptoms. So I have three questions:
Is it typical to take a long time to get a diagnosis?
I have been put on Amitriptyline. Is anyone else taking it? Does it help and how long does it take to feel any benefit? If you read the leaflet it makes you wonder how it ever would.
Thanks in advance for any answers.
Hi GiniaT and welcome!
You will find many people that have taken years to be diagnosed with fibro - myself being one - which took many years. But there are also some that received a diagnosis quite quickly. The docs now base diagnosis on symtoms rather than a diagnosis of exclusion (testing for other things first). Although many like to still do this to be safe.
I am also on Amitryptiline, low dose 10mg for pain and it helps me. Although there are many who can't take it as it makes them too sleepy or other side effects - like with everything we're all different. It seems to be taking the edge off my pain and helping me sleep, I take it at 7.30pm every night so I'm not dozy in the morning! I've been on it for 3 weeks and it's working okay. but it can take up to 6 weeks to kick in. Please don't worry about the leaflet, they are all scary! As long as you keep in touch with your docs if there's anything you feel unsure about then you should be fine. Also, if this med doesn't work for you you can always try another.
One more thing is that many don't take any meds as they prefer to use self care only. But that's personal choice. There are also many that do both.
Hope that helps.
Take care
Thank you! Only got my diagnosis because I saw a specialist privately after going round in circles of blood tests etc. . A relief in a way to know it is not in my head. I had basically worked out all the self help stuff and been doing it but pain, exhaustion dips and insomnia reached a point where I could no longer cope. She said the Amitriptyline would help with sleep and take the tension out of muscles which would help with the extreme headaches. Will see how I go on the pill, but thanks for the tip to take it earlier in the evening to avoid the early morning sloth. Will try that. 🤞
Anytime! Hope the Amitryptiline helps 👍
Hi and welcome to our group. I was diagnosed fairly quickly when I eventually went to my GP, I had had many symptoms for a few years, gradually getting worse. She did a few blood tests and x-rays just to make sure it wasn't anything else, but she was pretty sure it was Fibromyalgia.
As for Amitriptyline, I was prescribed it right at the beginning, started on 10mg at night but had to be gradually increased to 50mg at night. It does help a bit with the pain and helps me sleep, although I only manage 3 to 5 hours a night. I have none of the side effects, so I suppose I'm one of the lucky ones.
I also use a weighted blanket, again to help me sleep. I use a magnesium spray on my legs that really does help.
You'll find that it's a case of trial and error regarding what helps you and what doesn't. Hopefully the Amitriptyline will help you, with no side effects.
Thank you! So nice to find people who understand. I am another who thinks 5 hours is a good night.
Hello and welcome, yes you will read many posts of the journeys members take until they reach the diagnosis, medication seems too be trial and error along the way, so might be see how the next few days go for you. The forum is very helpful with info and some lovely people too have a chat with x
Thank you. 😊
I had my iPad in bed and watched couple series on Netflix until I got off (nearly 1 o’clock) then builders were drilling across the road at 8 , I do get used too broken sleep , visits too the bathroom and sometimes making a warm drink ,we try anything don’t we that might help xx
Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications
Hi GiniaT, and welcome. Yes certainly in my own experience it took a long time getting a name put to all the pain and sleeplessness I was having.I too am on amitriptyline. I take 75mg along with Duloxetine 60mg every night. It helps me get over to sleep. I can usually manage a couple of hours before the pain wakes me.
I hope it helps you xx
Hi I am on 50mg amitriptyline since February this year they do take edge off pain at night slightly I normally have 2-3 hours sleep at night
Thank you. They started me low with view to increasing if necessary. Will see how it goes. Not noticing anything at the moment.
Hello and welcome to the group. I tried it but I ticked off every side effect on the list so had to stop it after a couple of days. It took a couple of years for me to get an official diagnosis but my gp suspected it was fibromyalgia after all tests came back clear. It was getting a specialist appointment to diagnosis me that proved difficult. I've been diagnosed since February 2020 2 years after it all began. I was with a colleague of the guy last week and he now wants to rule out other conditions and has me trialling steroids to see if they help relieve my symptoms but I doubt they will. I am willing to give it ago though as meds don't seem to suit me I haven't found anything to work well and feel it's at least worth trying. It seems to be trial and error to find the one thing that suits you individually as what suits one does not suit another. I have a tens machine it helps when in a lot of pain and I found heat helps to hot baths with Epsom salts and a heat pad I got in lidl. I manage pain with paracetamol and vimovo when bad it's not great but takes the edge off. I try to find the balance between rest and movement so I don't over do things or I will suffer. Little and often is my goal now rather than facing tasks head on but I still get there and don't give in to this horrible condition. It is fierce frustrating at times but I do what I can and have learned to ask for help with what I cannot do and take each day as it comes. I hope you find a routine that suits you and the pain isn't to debilitating x
Thank you. I had been on steroids for 1 1/2 years but before this diagnosis. Helped in first month or two but then reverted to ‘normal’ while trying to get off them. Now off them and feel just the same except my symptoms got worse after a bad virus earlier this year. Felt I was going round in circles with GP and trying self help, my children got on my case, got a recommendation and booked a private rheumatology appt which resulted in diagnosis. Had been told to use cold packs on my very painful shoulder which just made it worse. Hot baths are my go to now and I had already developed a routine similar to what you describe. Knowing what I am dealing with helps with guilty feelings and questioning why I was not getting back to my old self, as I have always been a non stop, go to person. Learning to admit ‘defeat’ and ask for help comes hard but working on it. As you say it is so frustrating but determined not to let it get the better of me. 😊
Yes I feel your pain I am the very same I was the carer doing things for others until I couldn't it was literally my profession but I try and find the positives in life now and focus on them it's the only way to get through life with this chronic pain sending hugs
Hi GiniaTI would just like to add the i have acupuncture, by a registered acupuncturist who practices 5 elements... The britsh acupuncture council... Ask about fibromyalgia protocol... It helps me... Pain and stiffness definitely relieved
Thank you. I was going to ask about acupuncture, as I have used it previously for a neck injury and also IBS and found it helped. Will give it a try again. 😊
My acupuncturist is registered on British acupuncture council, really works wonders for me
I was diagnosed by a rheumatologist after my GP had tested bloods and various scans had ruled everything else out, after about 3 years post septic shock/acute pancreatitis. I have regular, every 6-8 weeks, gentle spinal manipulation by McTimoney trained chiropractor to ease hips and spine. I take amitriptyline and co -codamol (30/500) daily, but try to keep it at low dose to take the edge off. I am not conscious they reduce pain, but certainly notice the difference at night if for some reason I haven’t taken them ( prescription still to be renewed, or forgotten to take!)…not getting to sleep until well after my usual 2 pmish. Daily I also have a long hot bath, and try to walk for 30 mins.
Fibromyalgia - Newly diagnosed
Newly Diagnosed
Newly diagnosed
Newly diagnosed 
Newly Diagnosed.
