newbie

[Keating4135]

dr diagnosed me with fibromyalgia today along with vitamin D deficiency. She prescribed amitriptyline, I’m hoping this will help .

I hate feeling in pain all the time and not being able to sleep.

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publicationsAmitryptiline is one of the commonly used medications - but it can be trial and error finding the right medication/dosage that works for you. Also, medications do not always take pain away but just reduce its intensity.

Many people need to find medication ways of managing the condition which for me includes pacing, exercise /keeping active, heat, mindfulness, meditation, holistic therapies, weighted blankets, cbd, supplements, homeopathic remedy, distraction etc

[Sandissgundes]

hi there. Yuk sounds like you’re in a lot of pain. Amitriptoline is classified anti depressant which tends to numb emotional and some physical pain. Which is okay if that’s your only choice. But it’s not and I wouldn’t stop there. Please watch this youtu.be/DOwBA5QIXS8?si=xIm...(Not working as expected?)

[AllthatGlitters]

Hello I was initially put onto amitryptalyne however its didn’t work for me so I moved to nortryptaline which is a lot better, I’m on it for nerve pain. It does help. Not 100% but I also take naproxen or tramadol when I need to.

X

[Sarahvit]

hi Keating, Hazel gave you a lot of information about fibromyalgia and I have tried it all. Everyone is different so what works for one doesn’t mean it will work for you. I have found this to be true over the last 30 plus years. In my experience when I find something that works then the next doctor wants to change it. I moved around a lot so what the previous doctor prescribed was working then the new doctor (in another state) didn’t like a drug so would switch it to something else which didn’t work as good. Or a new condition (problem) would pop up which lead me through a whole long list of ologists. Which is what is going on now because of this new PAIN that started up 6-7 months ago. I have learned that fibromyalgia likes to invite other diseases to the party. Yes somethings do leave on their own. Gastroperisis, sleep apnea and ulcerative colitis for example to name a few. Pacing, good nutrition, exercise ie yoga for me,, self care, faith in God, mindfulness meditation and healing meditation have been the non pharmaceutical treatments for fibromyalgia that has been a major factor for me in coping with this illness. Also getting involved in research studies also helped me feel like I was playing a part of finding a cure. I have been a part of 4 or 5 studies. This helped me feel like I had purpose. I tried the CBD gummies (yes you can take too much and suffer from a” bad high” I did) so it helps some people but not me. Having a good massage helps but gets expensive. A lot of alternative medicine is helpful but expensive so wasn’t able to continue. It is a trial and error situation that keeps evolving too as our body ages. Doing things that you enjoy doing also helps. Body, mind and spirit are all connected so need to care for all 3 parts. Sorry for rambling but I hope I was able to help in someway. ❤️

[Keating4135 in reply to Sarahvit]

Thank you all so much for your advice and guidance. I shall all on board. At the moment I’m just doing what my body needs me to do, which involves a lot of resting , feel so tired all the time and no energy and in pain and can’t sleep .

[Sarahvit in reply to Keating4135]

You are welcome. Yes we need to listen to our bodies. When I was young I use to burn the candle at both ends and think that played a part in getting fibromyalgia.

[klr31]

You need to address your low D too, either through the doctor or yourself. Low D can cause pain in the body.

[Sarahvit in reply to klr31]

Hi Kir31, low vitamin D causes depression but off the scale high vitamin D levels traditional doctors say it causes pain but my natural medicine doctor said she never knew of anyone with a high (117) vitamin D level to cause pain. My PC and endocrinologist both said high vitamin D levels above 100 causes pain. Well my vitamin D levels are down to 77 so started taking my vitamin D once a week. I had stopped taking it because my PC and endocrinologist said it was causing my pain. Vitamin D levels are down but pain level is still there. Several years ago I got really depressed without an event bringing it on. Long story short someone checked my vitamin D levels and it was 28 so was prescribed vitamin D 50,000u twice a week which helped with the depression. Just my experience.

[Camille1]

Hi, I was also diagnosed with fibromyalgia after being diagnosed with vitamin D deficiency. I was given a 2 weeks loading dose of vit D. They should give you that too. I was prescribed amitriptyline for nerve pain and found it helps with sleep, but more importantly with my over-active bladder. A side effect is that it also relaxes the muscles around the stomach, so causes acid reflux. You can't win!

Hope you get something that helps.

[Suffolklady]

Sorry to hear your diagnosis can I ask how you were diagnosed. I’ve had PMR not sure if it’s in remission been on prednisolone for 6 years changed to hydrocortisone recently. I had a very vague test from my Rheumatologist for Fibromyalgia hadn’t seen anyone for three year what with Pandemic etc. I wasn’t too bad on the day she did the pressure point test was a bit iffy as I wasn’t having a mega bad day. The last few days the pain has been beyond bearable. Not having a conclusive diagnosis I just wondered?