Before First Big Flareup... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Before First Big Flareup...

Irish-Cow profile image
12 Replies

Can I ask those of you you have fibromyalgia a long time to tell me if you think I have had it long before my first flare up this month. Firstly I was in a car crash in 2005. That damaged my neck , upper back movements, and particularly my left shoulder and took me three years to get my left arm and hand functional in any useful way down to fingers that would not drop anything I tried to pick up and weak arm exhaustion just carrying my head around etc etc... I have always had to be cautious since.

But since that crash, I got used to tiring easily, getting chronically tired, unable to think clearly often, and at times sleeping for hours in the daytime... one year when I had a bit of a cough, cold, whatever, never any fever.. I basically slept for days, only surfacing in a drugged like state because my body and brain needed food and water.. I would shovel in the easiest food to hand, down a few cups of tea and fall back to bed to sleep for another five-7 hours.

I laid all this wreckedness down to the crash as it was tiring having a weakened upper to back and shoulders etc and for the first six of those years I was a full-time 24 /7 carer... By the end of which I was just into my 60s so the body isn't getting any younger and I'm doing a fair bit of physical work and maybe overdid it..

Friends would often say...would you not take up some sociable hobbies/ activities in the evenings... My response would be that by the evening chances were total fatigue would be dropping from my eyes and the thought of having made an advance commitment would be a stress as by evening I couldn't tell in advance if I could stand or think straight until the actual time... this past year was the worst for being tired and not able to think half the time, and I could see more and more jobs around the house just never getting done.. but I laid that down to the whammy of losing a best friend quite suddenly last autumn who I really really miss.. and the long rural winter of her not being around etc.

But one friend often said down the years how that crash had totally changed my life... how I never physically got back to how I was before it... She also would say that I always laid my fatigue and any symptoms etc down to the crash but was I sure there was nothing else going on.. by mid 60's there can be... but my bloods and blood pressure we're normal.. and it seemed to me that I was just lucky to not have had more serious injuries but unlucky that the damaged muscles often caused me to be knackered ever since! I never really thought about it... Just did loads of stuff when I could, wasn't into taking meds.. and I thought it actually handy that when real fatigue hit, I could just sleep through it instead.. knowing the next day, or two...or three.. I would resurface and feel sorta normal again!

Now since last month when it began with what I thought was a frozen shoulder but spread to the other, and then my lower back and hips to the point where to get up up the bed or a chair was a mind over matter excruciatingly painful achievement.... I'm wondering if all that fatigue and sleeping it off the past years was actually fibromyalgia being headed off by my body, shutting everything down as a self saving emergency action? And perhaps the death of my friend in the midst of the covid lockdowns etc was the catalyst that blew the lid off?

Did any of you with no other health issues have any sort of similar experience background like that before having your first flare up? Like... Just chronic fatigue and brain fog regularly which you could justifiably attribute to some other event as I did to my car crash? That you now think could have be a pre fibromyalgia thing you had instead?

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Irish-Cow profile image
Irish-Cow
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12 Replies
Cat00 profile image
Cat00

Car crash trauma seems to be a relatively common trigger for fibro it seems. Most of us have loads of other health issues though!

Irish-Cow profile image
Irish-Cow in reply toCat00

Someone mentioned recently another condition that I had never heard of - Polymyalgia Rheumatica. It seems to affect mainly the hips and shoulders with stiffness and pain, according to my googling of it. Now I wonder is that what I have instead of fibromyalgia as my flare up really involved those areas and they are the areas that all my stiffness is in since. I haven't had a lot of the symptoms listed for fibromyalgia and which others here seem to suffer - the leg problems, sweats, headaches etc..

Cat00 profile image
Cat00 in reply toIrish-Cow

My mother has Polymyalgia other than having myalgia in the name it is fundamentally a very different condition. You will see obvious signs of inflamation in your bloodwork, that inflamation if left untreated will damage your body. Fibro doesn't show inflamation in bloodwork and doesn't seem to damage your body in itself. Drugs like corticosteroids are used to treat polymyalgia which won't help fibro. If you think you have Polymyalgia you must get treatment as there are other dangerous consequences that can arise other than the damage inflamation causes there is a condition called Giant Cell which can be serious.

Irish-Cow profile image
Irish-Cow in reply toCat00

Yes, I was reading about the Giant Cell linked with Polymyalgia Rheumatica. Interestingly... I have the past few years had the start signs of glaucoma and was put on eye pressure drops earlier this year.. I don't know if that's connected. I am trying to research as much as I can to identify my possible condition.. I had been very fatigued and head fogged early this year and a friend suggested I get my bloods checked for thyroid malfunction.. I hadn't had the flare up when my gp did those blood tests which she said showed nothing to worry about.. I phoned her of course after the Flareup but have leave it 3-4 weeks and phone again to get more blood tests because there is a huge backlog of patients who couldn't get treated for more life threatening illness's due to covid-19 in the hospitals the past year and my gp is swamped right now dealing with blood tests etc for them.. which I have no problem with waiting for... after all, my blood tests might shed some light but can't fix the condition so it's not urgent in that sense. But now I will mention to her that I think it could be PMR rather than FM... though of course I don't know!

Thanks for the article link... Though as we are all on vit D daily to protect against covid-19... I wouldn't have thought that we are low... unless it's not being absorbed, but I do take some zinc with it which they advise.

Dinkie profile image
Dinkie in reply toIrish-Cow

My husband suffered GCA and PMR and first symptoms blinding headache and jaw pain. Biopsy of vein in head will usually confirm GCA and it is very serious. Steroids will bring it under control but getting the right dose is easier said than done. Then the problems of tapering down the steroids until minimum amount of steriods required to keep the beast at bay is achieved. Nasty illness wouldn't wish it on my worst enemy.

Cat00 profile image
Cat00 in reply toIrish-Cow

It wasn't me who sent you link to vitamin d deficiency.

in reply toCat00

What blood work does it show up in? I have high ANA titers and high thyroid anitbody titiers but no one can explain them to me.

Cat00 profile image
Cat00 in reply to

It's generally your ESR and CRP, and ruling out other conditions that cause inflamation markers like arthritis. My mother has these bloods checked every month and has had scans on her knees to see if she had arthritis.

penny profile image
penny

I’ve just done a search on the role of vitamin D and found this, which is only a small study but I did see that there are other articles about vitamin D and polymyalgia rheumatica: europeanreview.org/wp/wp-co...

Putting my therapist hat on, your car crash will have had long-lasting effects and you probably need to have treatment to release all the injuries, both physical and mental (not that in my line of work we differentiate). (When I was training I treated a friend who had whiplash and the ‘official’ treatment was for surgery; thankfully she didn’t wish to pursue this and asked to be one of my volunteers. After four sessions she was able to sign off on her whiplash (actually whiplash itself is quite straightforward to treat)). I do not know of a Body Realigner in Ireland but if you wish I can ask on our FB page; I would recommend that you look at Jan Trewartha’s website to get more information on Body Realignment and possibly a practitioner in Ireland. I have found that many clients have said that they are fine after a traumatic event when in fact their body holds the memory of trauma and triggers many other problems. These traumas can be released to permit the body to repair. Neck trauma may have damaged your thyroid and your tiredness rings a bell with me and my hypothyroidism which, before being diagnosed, would see me unable to stand I was so tired. I take it that you have had full thyroid tests done?

Irish-Cow profile image
Irish-Cow in reply topenny

I assume as I mentioned thyroid whatever 'full tests' for it mean were done. My hp said the bloods tests showed thyroid normal. I was at a physio since flare up, during it, she did something she called a back realignment. Is that the same thing as the body realignment you mentioned. It was very gentle compared to the very different physio I had for the upper back crash damage... which was more physical. Different situation though... healing damage from this condition I have now. Her name is Cora Langan. She practices in both Castlebar and Ballina Co Mayo. She is also an acupuncturist. Suggested I consider acupuncture for the pain... I've never had acupuncture...

penny profile image
penny in reply toIrish-Cow

I would doubt that it is Body Realignment as there are not many of us in the UK; similar modalities are ortho bionomy, fascial release and positional release. Body Realignment is very gentle.

It might be worth posting the results of your blood tests on this site for comment as ‘normal’ means very little in terms of health just that a number is within a range.

eks100 profile image
eks100

Bloods for Polymyalgia rheumatic a are quite specific and wouldn’t normally be part of a standard blood screen. Speak to you GP. - even if your glare isn’t current, your levels would be raised. Yes a car accident is a common trigger.

I have primary fibromyalgia, and don’t have any other underlying conditions. I was diagnosed by a rheumatologist who declared during the consultation that he didn’t know anything about FM. GP was similar.

My employer contracts OH services from the NHS, and I just happened to speak to a OH consultant who is very upto date with FM - changed to doxycycline, referred to pain clinic, don’t be hard on yourself (I find this very difficult), and concentrate on one thing at a time. He also indicated an 18 month recovery period to my Employer, which has been a life saver, giving me he space to take it easier. I am 9 months in and definitely improving….

It’s disappointing that his knowledge is not shared more widely.

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