Trendy ailments

[Luludean]

It seems that there are many posts about AF sufferers also having Fibromyalgia. I had never heard of this nor Polymyalgia till recently. It seems unlikely that it should suddenly become a common ailment . Is it being wrongly diagnosed???? I was diagnosed with it , put on steroids immediately and joint pain disappeared . But, then I read the follow up letter from the specialist and it was full of awful mistakes !! He write that I was in sinus rhythm , heart was fine etc! A charlatan ! There is no way these 2 diseases Fibro and Poly myalgia can be diagnosed by simply looking at someone nor with a simple blood test . I still think that onset of widespread joint pain could be linked to non warfarin anti coagulants.

[BobD Volunteer]

Interesting idea but why discount warfarin?

[Luludean in reply to BobD]

Hi Bob , I did not discount Warfarin . I only mentioned other anti coagulants because I developed joint pain after being taken off Warfarin and put in rivaraxaban then apixaban . I am perfectly aware that my joint pain could be due to other things( not yet diagnosed) but , I am interested in the (to me ) big increase cases of supposed fibromyalgia and Polymyalgia .

[CDreamer]

Both Polymyalgia and Fibromyalgia are inflammation of the nerve - not joint pain. And if your bloods showed inflammatory markers then yes, it could be a reasonable diagnosis.

Polymyalgia simply means multiple pain. There is nothing trendy about Fibromyalgia - it’s disabling, extremely painful and autoimmune in nature.

That’s not to say your doctor is competent but I don’t follow your argument - were you in NSR when you saw him? In which case he is accurate in stating you were in NSR at the time he saw you.

If indeed you have joint pain then if you take statins - possible and there have been a few reports of joint pain from one of the DOACs - can’t remember which as I have been taking them since 2013 and not had any difficulty but there are a few people

[Luludean in reply to CDreamer]

Hi CD dreamer , I have had mitral valve repair and am in persistent A F . The consultant who wrote that I had a normal heart and was in sinus rhythm did not seem to notice this.

I am not ,of course , discounting the extreme pain and misery that the two afflictions cause . What I was trying to ask was , why so many people are being diagnosed with either one or the other of these illnesses now? A surprising number of the posts here recently, say that the writer has AF , is on DOACs and has one of the myalgias. I had never heard of the condition till last year now I hear of it frequently. I was told I had Polymyalgia and did “not” have it . I simply wonder if some specialists are over diagnosing these illnesses. I am under the impression that you can’t simply base a diagnosis on a blood test .

[CDreamer in reply to Luludean]

I actually think they are vastly under diagnosed, however, usually diagnosed by a rheumatologist not a cardiologist. If this guy didn’t read your notes then they are indeed not to be relied upon.

Bloods can identify inflammatory markers & antibodies which are indicators.

My aunt has had disabling Polymyalgia for about 10 years but only recently correctly diagnosed & appropriately treated. The difference in her QOL has been dramatic. Neither is joint pain.

[Auriculaire in reply to Luludean]

Polymyalgia rheumatica is quite different from fibromyalgia. It is a condition that has a specified treatment - high dose steroids - and is usually accompanied by very high inflammation markers like increased CRP or ESR. It can be accompanied by temporal arteritis which is a very serious condition of inflammation in one or both temporal arteries that can lead to blindness. Fibromyalgia can be a dustbin definition which is given for unexplained body pain. This pain can be in the joints /muscles or connective tissue or all of them . It is often accompanied by intense fatigue particularly after exercising or other physical effort. Other symptoms such as digestive issues, palpitations ,headaches,anxiety and/or depression , peripheral neuropathy may be present. Fibromyalgia affects women far more than men as does polymyalgia rheumatica. There are those who believe (including me ) that many people diagnosed with fibromyalgia have actually been floxed ie poisoned by Fluoroquinolone antibiotics . It is interesting to note that the incidence and diagnosis of fibromyalgia has followed the same timeline as the use of this class of antibiotics. There are also those who believe that fibromyalgia is undiagnosed hypothyroidism and is a result of insisting that hypo be diagnosed entirely on TSH results and taking no notice of clinical indicators. Years ago when visiting my step father in hospital I was waiting in the lobby for my husband to get the car , when the woman sitting next to me started telling me she had just been diagnosed with hypothyroidism and put on thyroxine. She hoped it would help her as she had felt ill for years. This lady had what is known as myxodema face - a distinctive alteration of the facial features which comes with advanced and very long standing hypothyroidism. Something her doctor had not recognised - indeed probably not even been taught to recognise as all that is now necessary is raised TSH. Luckily for her it had gone up enough for diagnosis before she died.

[Luludean in reply to Auriculaire]

Thank you Auriculaire for your Intelligent highly informed reply . I will take time to read it thoroughly! I was diagnosed by a Private rheumatologist and immediately put on steroids .

My NHS GP took umbrage that I had gone privately , but I had got nowhere with the practice and told that all sudden joint pain was normal at my age!!!!!!!! I did ask if the pain could be due to new DOAC . I was prescribed hideous brain numbing pills which I refuse to take . I have enough heart pills to make me toxic .

I eventually saw a wonderful NHS specialist who discounted Polymyalgia and took me off steroids. I had loads of tests in March but then Covid happened and I still have had no follow up appointment . So I don’t know what is wrong with me .

I will digest your missive and reply .

Thank you. L

[Auriculaire in reply to Luludean]

Joint pain is a side effect that has been reported by some people here since being put on a DOAC. I have arthritis in both hips - confirmed by xrays but I think the Apixaban increases the pain. I reduced the dose temporarily after banging my head and noticed a diminution of pain. When I went back to my normal dose it increased again. Several weeks later I tried this again as an experiment. Same result. I am aware that many here would say I was taking a big risk doing this but if the Apixaban is causing worse joint pain I want to know. It is then a question of balancing daily misery against an event which might never happen. The pain and deterioration in my hips started after going on Apixaban but I am sure the cartilage disappearing is more likely as a result of Fluoroquinolone toxicity as I have cartilage degeneration in my ribcage which has been present for more than 20 years

[Luludean in reply to Auriculaire]

I am strangely excited after reading your mail!!

So I am not alone in querying this link between DOAC and galloping joint pain !! I feel quite sanctioned. I read many posts from a year ago saying the same thing!!

I know it “ could “ be coincidental . But......

It is a drag not being able to take anti inflammatories , the few weeks I was on steroids all pain vanished but, side effect was that I was up hoovering or making pancakes at 4am.

[Bawdy]

Fibromyalgia and polymyalgia have been around for many years, my husband got a diagnosis for polymyalgia about 25 years ago and has not been able to get off steroids, about 10 years ago he developed AF. It's an elimination as there is no blood test to says "polymyagia"I think my husband would prefer AF to the other.

[Luludean in reply to Bawdy]

I didn’t think that Polymyalgia could be diagnosed by a simple blood test . Thanks for confirming that . Keep well in this tempestuous week end!

[Auriculaire in reply to Luludean]

I had tests for polymyalgia a few years ago . The results that came back from the lab showed some sort of graph. Luckily I did not have it. It was the combination of headache and scalp pain that prompted my GP to order the tests.

[Auriculaire in reply to Bawdy]

Polymyalgia yes. Fibromyalgia not so much. Fluoroquinolones have been on the market since 1987 in UK. I was floxed first time in 1989/1990. Before then there were quinlones often prescribed for UTIs . They had similar side effects but less intense. The addition of fluorine to the quinolone core molecule greatly enhanced their effectiveness and sadly their toxicity.

[belindalore]

I have had joint pain since being on Eliquis. Same as what you call apixaban. It is one of the many side effects of this anticoagulant. Look up drugs.com and read about ALL the side effects. Drs don't know everything or tell us about all the side effects of these meds. And remember we are all different and have different reactions to meds. Take care.

[lwm1198]

My fibromyalgia was diagnosed 30 years prior to afib...and it is often seen along with migraines and IBS, also true in my case. Most of this has eased up as I aged, although arthritis is now my major pain! Hip, knee and soon shoulder replacement,,,

[Emgee]

Hope I am not in the wrong in replying here, but quite awhile ago I read a post on another site, that strongly suggested that tachycardia and other heart arrythmias are brought on from sleep apnea. He suggested that people do not know they have sleep apnea, but some suffer bad dreams and awoke abruptly, as their breathing was interuppted and it was caused by

sleep apnea. I guess it is something that could be looked into.