Do you accept your diagnosis? - Fibromyalgia Acti...

Fibromyalgia Action UK

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Do you accept your diagnosis?

crw2ddd profile image
11 Replies

My general practitioner has suggested to me that I have fibromyalgia after I continually return for visits for different ailments: neuropathy, heel pain, aches and pain, muscle twitches, itching, TMJ, bruising, burning tongue, anxiety and depression. I have hashimotos, but my numbers look optimal and my antibodies are going down and are almost in the normal range. I've had a lot of testing only to find a positive ANA and nothing else. My symptoms truly began when I was diagnosed with severe post-partum thyroiditis 2 and half years ago. I was eventually put on Synthroid and then added armour but I have never been the same since. I've not spent one day feeling like myself and it's been a struggle with symptoms coming and going and my energy levels rising and falling. It's a real roller coaster ride. But, all along I've been chasing the thyroid issue, different medications and dosages and vitamin levels. Either that, or being convinced that there is something else wrong with me and just feeling anxious about whatever mysterious undiagnosed illness is plaguing me. I wonder though, if there is something to the fibromyalgia diagnosis. Could the postpartum thyroiditis triggered it somehow at the same time? I find it odd that it would all blow up at the same time. I guess what I'm asking is do you all accept that you have fibromyalgia and what did it take for you to believe it? For me, it feels like I'll need nearly every test under the sun to exclude every known disease known to man before I can just sit back and accept fibromyalgia.

11 Replies
RayB profile image
RayB

I think the answer lies in a question: What is Fibromyalgia?

As no one knows and everyone seems to have their own opinions how can any of us just accept a word! To me "Fibromyalgia" is not so much a diagnosis as a pigon hole. Somewhere to dump us and feed one antidepressant after another in the hope we won't ask to many pertanant questions while little is done.

I have always believed that there is much much more to "fibromyalgia" than what is commonly aluded to,, it certaintly seems to my thinking that much of the problem is hormonal in nature and think we should be at least seeing an endocrinologist on an ongoing basis, capable of doing estensive testing to get a better picture of the possible problem.

Sadly it's a cursory visit to a Rhumatologist if your lucky and discharged to the care of your GP while you go away in the head from all the health problems and the GP just looks blankly suggesting you try a different antidepressant.

It's like when the only tool is a hammer every problems a nail,,it's infuriating.

So I have resentmnet for the diagnosis,, I have resentment for the current treatment,, but more than anything I resent the lack of intrest and the general attitude to "Fibromyalgia" by the medical profession today.

Ray

Patdoyle profile image
Patdoyle in reply to RayB

Well said Ray. Totally agree

crw2ddd profile image
crw2ddd in reply to RayB

Thank you for your response. I agree, and I feel sort of ignored. I'm 34 years old, I have two young kids and I can't even believe I've been shoved off to different doctors all the time who I feel are unwilling to really dig down and figure this out. I'm left to my own devices...no medical training and the internet to try and troubleshoot these symptoms. Either that or bankrupt my family with loads of private testing from a functional.medical doctor not covered by my insurance.

RayB profile image
RayB in reply to crw2ddd

Oh do be careful about educating yourself,,, no one other than a Dr is capable of knowing anything about medcine!

They really don't like it and have special terminology for people that educate themselves,, they usualy start with a dissmissal of information on the internet.

If you persist irrespective your level of intelect, capacity for learning or quality of text books,, you can quickly become "Overly intrested or invested in your own illness" with a diagnosis of Hypochondria,, even suggestions of delusional or paranoid can come around. Quite a strange sort of arrogance, bordering on defensive!

A Witch in a basket defense to cover the failings of a subject, an education that is sadly limited, but all to often pushed well into a world of arrogance and pretence,,nothing more,, a great big bubble.

One of the other members used a lovely term the other day "Medical Gaslighting".

Best Wishes

Ray

crw2ddd profile image
crw2ddd in reply to RayB

Very true! I read a lot of things online and I have several books, but I never take action with anything without discussing with my doctors of course. There's so much out there it's easy to fall into traps. But, people get desperate when they feel that their doctors don't listen to them or aren't taking them seriously. Sometimes i do feel like a hypochondriac if I'm being honest.

RayB profile image
RayB in reply to crw2ddd

Yes your made to feel that way,, it's caused by incompetance lack of intrest,,, some people are just not prepaired to take it lying down while they are milked dry and dismissed!

Dancer5 profile image
Dancer5 in reply to RayB

Ray my dr doesnt feed me too many drugs. He said to try Tumeric and black pepper. It may help but its £25 a lot of money isnt it. Im in pain all the time

RayB profile image
RayB in reply to Dancer5

So go on to one of those online auctions and look up Organic Tumeric powder 250G search for nearest first,, the one I get is 7.29 delivered,, enough to do you for about a year!

Store it in a in a sealed jar in a cool dark place.

Gently melt a Tbs of Coconut oil in a little pot add in about twice the amout of tumeric and stir it into a thick paste and remove from heat.

Grind 1 Tbs of black pepper (a pestle and morter is great for this) and stir it in.

Scrape it out of the pot and keep in a little jar in fridge.

About 1/2 a tsp a day is the average dose.

don't make up a huge batch at a time as coconut oil tends to go stale when it has been opened.

If your worried about the coconut oil going of just use it up,, delisious in potatoes and any veg mash with a little salt,, so much nicer than butter.

The tumeric mix has a flat spicy sort of taste,,nothing unpleasent and you will be so much better of making your own,, financialy and otherwise, it's all marketing.

Best Wishes, Ray

crw2ddd profile image
crw2ddd

Thank you for answering. Yes, it does seem like a collection of conditions. My rheumatologist believes it's some people's response to either a chronic illness (like autoimmunity) or some kind of trauma. This body gets stuck in this mode where it's trying to protect you with pain signals so you'll lay down and heal. Trouble is that once it's started sometimes it's hard to turn it off; the neural pain pathways are established and over sensitive. He thinks the only way to disrupt this is aerobic exercise, reducing stress, and low dose amitriptyline.

crw2ddd profile image
crw2ddd

Thank you! I've been meaning to try swimming since I've got such bad heel pain for no apparent reason and also tai chi or yoga studios are all over my town so I'm certain to find one to join. I think that's about all I could manage to do aerobically. Possibly working up to light biking and some light weight lifting could prove helpful. Trouble is I tend to over do things when Im well and then that sends me straight backwards for many days.

Dancer5 profile image
Dancer5

I am exactly the same. I could have written this post. I have never accepted it. I think i do now. Ive gone down quickly. I cant lie on one side because my legs burn, the other side is so painful too. I have pain in my ribs and feel like its lungs. I have ibs and trigeminal neuralgia. All my life i worked hard. Im 65 and had it never go out.

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