Hi everyone. I have just been diagnosed with fibromyalgia. I have been treated for polymyalgia rheumatica for 6 years with steroids and laterally with methotrexate also. On a recent appointment with my rheumatologist I took a sheet with 29 symptoms on it starting on my scalp and ending at the soles of my feet. Rheumatologist thinks I have fibromyalgia and prescribed amitriptyline. Only trouble is I also have atrial fibrillation and take medication for that. I only managed 2 doses of amitriptyline and went into AF twice in 3 days so I have discontinued taking it. I can't afford to be in AF persistently as when this happened before it caused heart failure. Can I ask, I do have widespread pain but not all the time. I am also interested in natural remedies for coping with pain. Thank you in anticipation.
Newly diagnosed : Hi everyone. I have... - Fibromyalgia Acti...
Newly diagnosed
Pain that comes and goes is a feature of fibromyalgia, pain that moves around the body is also a feature.I'm surprised your doctor gave you Amitriptyline if you have a heart condition because the two are contraindicated.
Sadly for a lot of us medications don't work, which is another feature of fibromyalgia. I am actually on Amitriptyline myself but for another condition. I don't take anything for fibromyalgia. I use exercise to treat it.
There are supplements people try but there aren't any with any proven benefits and obviously with a heart condition you'd have to be especially careful.
My mother got Polymyalgia 10 years ago and is still on a small dose of methodrexate. Although she is a 100 times better than she was her knees are still swollen which seems to be a legacy of Polymyalgia. We both suspect the Polymyalgia triggered fibromyalgia as she now has many complaints similar to mine. However she is 80 years old and cannot use exercise in the way that I do. She swims and does weights and yoga, but all very gentle.
Others on here will have better knowledge of supplements. I've tried Magnesium, COQ10 and at one time I tried a crazy amount of supplements to try something called a methylation cycle reboot. None worked for me sadly.
Thank you so much for your input. As I said I know polymyalgia inside out but fibromyalgia is all very new to me .
Hi PMRprincess, at least now you know what you are dealing with and for that, i sympathise. Fibro is a horrid condition. I echo the things Cat said above. It really is trial and error and ive been trying different things since 2012 when i was diagnosed. I do not take anything more than normal ibuprofen and paracetomol for my fibro. I came off all the strong medication that the Doctor prescribed a few years back. I just cannot afford to be drugged up to the eyeballs and feeling like a zombie, i have an elderly mother to care for and a husband with health issues too, so i need to be on the ball every day - even though some days i just want to curl up and shut the world out. I believe in doing whatever suits you in terms of feeling some relief. I tried acupuncture for upper body pain and it worked for me, i only have lower body pain now. I also use a gel called Freezegel by Masterplast. Its cheap, you can get it on ebay and it works for me. Give it a try. Hope you manage to find something that works or at least helps. x
Thank you so much for your support. Now I realise that the pain isn't always constant I have a better handle on it now.
Hi PMRprincess♥️
You can google Fibromyalgia 200+ symptoms to help give you a better idea of the areas that have been reported that can be affected.
Best wishes in all things; sorry you have our condition. It affects everyone differently but the commonality is pain and fatigue. It is important to pace yourself and try not to stress yourself as this makes things worse overall.
Take care and abundant blessings.
Love and prayers,
EJ 🤗♥️🥰🙏🕊🌿🌸🦋
hello. I was diagnosed with Fibromyalgia a year ago, after misdiagnosis- burning on face , arms, legs etc and fatigue was explained with Low iron, then food allergy! After diagnosis, I was prescribed Amitriptyline, then norotriptyline, duloxotine. - none seemed to help . I am now taking low dose Pregabalin 100mg daily. Not really helping, symptoms continue, but I am not wanting to increase dose as side effects of weight gain and swelling of legs, knees is almost as difficult to cope with as the fibromyalgia symptoms. What I do use with doctors aware, is CBD paste , high strength 3000it helps, but not quite sure how, but it does. I buy from Bluestone Remedies online. I also get help from NHS Somerset Pain Management team. They offer online live sessions 8x2hr on Body Reprogramming, and Mindfulness. I did the first, and am now on the 2nd. The team encourage use of yoga, Tai Chi, and the use of Vidyamala Burch and Danny Penman’s Mindfulness for Health, relieving Pain, reducing stress…a book, and website. Really helpful when seeking an alternative or very low prescription medicated treatment, like me. Hope this helps.
Thank you for this information. It seems there is a lot to research about as I am just at the beginning of my journey.
I am roughly in the same position as you.....10 years on steroids (still am) had PET scan because Rheumatologist thought I now had Fibro, he was right, no inflammation showed up on scan which he said only does on PMR. I am struggling to come off steroids, fibro pain so much worse when I lower....if I up the dose a bit it eases even the deathly fatigue....also as I'm sure you know, cortisol has to be dealt with. To me Fibro is worse....housebound with the fatigue and pain for weeks on end.......I cannot tolerate meds for Fibro either. I am confused though because Fibro is not supposef to react to steroids....well it does with me!.....Good luck....we push on....
Thank you for your input. 18 months ago I was put on 40mg of prednisolone as they thought I had GCA. My inflammatory markers have never been high, my biopsies for inflammation have never shown anything and still they keep me on prednisolone. I am now on methotrexate to get me off steroids. And yes we push on. Love and light ✨️
When I first went to my rheumatologist he told me that I didn't have rheumatoid arthritis but fibromyalgia. Both my doctor and I thought I had rheumatoid arthritis. For nearly 2 years I had excruciating pain and was bed bound. Amytriptaline , pregabalin , gabapentin , naproxen, tramadol.....none of these worked. One night I woke up screaming in excruciating pain and couldn't even bare my legs being touched. I had to call an ambulance and they had to give me gas and air to get me out of bed. After tests at the hospital I found out that although your inflammation markers should be around the 5 mark , mine came back at 225. My rheumatologist came in and apologised saying that I did infact have rheumatoid arthritis, 2 years of a misdiagnosis 2 years of excruciating pain that I shouldn't of gone through. I do however have fibromyalgia, rheumatoid arthritis, osteoarthritis, chronic liver disease, copd , emphysema, pseudogout, mental health problems, ulnar deviation. If anyone is unhappy with their diagnosis please get a second opinion
Oh my goodness, what a battle in all that pain.....very hard to get over to people how bad the pain is. My s ister has RA and first Rheumatologist I saw my sister went with me....I asked of I c ould have it also....no because you are zero negative with RA blood test, my sister said I am zero negative but definately have RA....he did n't even answer her......Fibromyagia I have learned is a cop out when no answers. I won 't give up....too much pain.....how are you now, do you have to tolerate lots of meds?Thank you for answering me.
Hi , thankyou for answering me. I am on a lot of medication, morphine being one of them. Also an injection every 2 weeks to control my inflammation. Yes CRP which was 225. My life is not good , I can't go out on my own because of the pain and I don't drive so it's like being a prisoner in my own home. Fibromyalgia isn't an inflammatory disease. If you think you have rheumatoid arthritis please get a second opinion. I wish you all the luck in getting some answers
Ps just remembered to ask....blood test showed CRP which is inflammation is 7 is that the markers you mean?
I am so sorry to hear your story. These invisible conditions are so hard to deal with. Love and light to you. 💛
The Curable app helped me, plus Duloxetine and CBD oil.
Aam reading the replies with interest - all very useful.
Wishing you well
x
Thank you for your interest. Love and light to you ✨️
Hi PMRprincess,
I have had Systemic Lupus and Fibromyalgia for 27 years now and I found over the years that what works for me the best is liquid Oxycodone. Now it is a quick release opioid medication and you take it when the pain starts. I find mostly the pain ironically comes mostly at night time and this also helps me sleep. Although I am on OxyContin, Diazepam and Zoplicone so you would imagine that I have no trouble sleeping, which is a joke in itself! I also take Amitriptyline but this is supposedly for depression. I’m no doctor so I don’t know how Oxycodone will affect your heart medication but all I can say is it does help me with some relief with the pain. I have tried every natural remedies you could imagine and for me personally nothing worked, but everyone is different so if you can find a natural remedy that works for you then that’s great. I’m now 53 years old and I believe the pain medication I take no longer does anything for me as I have been on them for that long, but I have found that Oxycodone, because you only take it when the pain becomes unbearable that it works for me. I really hope you find something that works for you. So I wish you the very best of luck and wish you a better, pain free future, hugs Wolf_1 🦋🐺❤️🌹
Thank you so much for your support. I don't want to take medication all the time, just when the pain is bad, like you. I think I have it moderately as the pain comes and goes. I can't walk very well and I stiffen up a lot. The steroids and methotrexate don't seem to be helping so I am guessing that is why the rheumatologist thinks I have fibromyalgia and not polymyalgia.
Newly Diagnosed
Diagnosed? PIP
Newly diagnosed
Advice please
