Docs always telling me there is nothing wrong

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lizziewine

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Hi - am new to this forum ... apologies for short sentences or phrases... too tired to type more - now it's 2am in my morning here - have had insomnia and fatigue for last decade and recently pains got worse. Went to do checks and scans and all, specialists and docs all telling me there is nothing wrong ... cannot and dunno how to explain to people... worse is when travelling, they stare at me in a wheelchair cos seems like nothing wrong with me .... had to tell it in a way of having old injury that didnt want it to flare up during travels - tired of being tired .... some days are good, some really bad ... just to say hello here, even if I dun have a diagnosis official, I know I found out what it is after researching all this while and I know I dun have to have doctors diagnosing or confirming it for me .... thank you and love for all suffering this terrible thing that gets in life's way often.
 

Hotheads

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DX FIBRO
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I hate to hear that you go through all that . I feel the same way sometimes. My own general dr doesn't even know what to do with me anymore .
Waiting to get into a ruematologist..had a6 month wait, but at 3 months now !! I wish it was sooner. Do you take any meds for your fibro
 

Sarafina

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Jun 28, 2016
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Izzie - I had also suspected that I had this for a while. A Rhuematologist should know better and check you out for it. Also, the Thyroid can cause alot of the same symptoms as well as vitamin deficiencies.

Hotheads - WOW that's a very long wait!! My doctor immediately put me on Magnesium Malate. Research it...it's well worth taking now and not waiting 3 more months. It's for muscle pain and for energy. Also, Vitamin D is a very important one.

Moving the body also is important. No matter if you have pain or not, try to walk as much as you can. If you work, and are sedendary..move alot. Get up , go to the bathroom..wander around. I'm learning all this as I go along.

Sometimes you do need to just drop and rest. But, I definitely feel better when I'm moving.

All the best to you both, and hope to see you around :)
 

Eyesup

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Dec 11, 2015
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DX FIBRO
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12/2015
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US
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I went 18 years of testing, testing and more testing. Always ended up being either put on antidepressants and anti anxiety (never helped) or being sent to a shrink that would put me on them. I know how frustrating and scary it can be. If I had known ANYTHING about fibromyalgia I would have be lined to a reumotolgist. I am sorry your dealing with the "undiagnosed" weather it's CFS and or fibro or something else.

The best advise I can give you right now is to start calling the reumotolgist office at least weekly asking if the have any new patient cancellation. Learn the receptionist name and tell her how desperate you are. My first apt. Was a six month wait but I did this and got in 3 months early�� I was ready to go when I called that morning and she had a last minute cancelation.

All of the advice above is good. Magnissium not only helps the pain but it helps sleep.

Heating pad and hot water bottles are my bff and hot epsin salt baths will help. Don't know if your open to or taking anything for sleep but sleep is crucial.

We are hear to help so just ask away.

Hugs from Texas
 

Forgetmenot

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UK
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Welcome to the family. I hope we can help u cope with this rotten liness .x
 

lizziewine

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Celebration - I finally see all your kindest replies and responses!! Took so long to show up - strange!!

i have ordered my Magnesium Malate and am waiting for it to arrive ...

So kind all of you - thank you so much for letting me know am not alone - I believe I have really abused my body beyond my limits since I was a teen and didnt realise how hard I have pushed it ... now am paying back and living that consequence and choice of not honouring my own body's limitations.

Am at 40 years old but my body really feels like am 80 years or more! Some really bad or good days, none of which I can tell in advance.

Yes, hot water bottles, epsom salts, warm showers and baths and plenty of rests are my best friends now ... after all these years, only my hubby understands how hard it is even to drag myself to go pee and have to muster energy to crawl back into bed when flare ups happen. Now he begins to see all the energy used within a short span of time and then am flat out for the rest of the day - it's really energy management that keeps me going through the day!

For me at this time, it's also relearning about what's pain and what is not - think I have shut out what pain was and no longer recognise it since some time back - now am relearning to note what's pain and notice it oncoming to prevent flareups.

I shall see if there are any rheumatologists who believe there is such thing as fibromyalgia because here in Asia, it's hard to have doctors believe such conditions exist - sometimes really feel like telling them just living a week of my life and then tell me if this condition or my chronic pains I experience are REAL! LOL!

Everyone insists I need an official diagnosis but I know what I feel and experience in pains is real and I know my body better than anyone else will.

Now back to working getting better sleep (my insomnia is quite bad) and because I don't have enough sleep at nights, my day is pretty much gone ...

Big hugs for all of you meanwhile ... I do hope that you too will have many more good days and beautiful moments even amidst the pains we live with... so happy am not imagining things and am not alone!

:D
 

todaybeforetomorrow

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Jul 12, 2016
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Undiagnosed
Diagnosis
00/0000
Country
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OH
Hotheads- A neurologist I just saw refered me to a rhumo a couple weeks ago. They initially scheduled me for november but I called every day I had off until I got an appointment tomorrow due to a cancellation... try that. All my best wishes to you friend.
 

lizziewine

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Just saw this website saying there is a 99% accurate test for fibro .... what do you think? Maybe someone here can see the website and let me know if it's worth a go? Dunno about the cost though ... i may not be able to afford it :-(

https://thefibromyalgiatest.com/?page_id=1402
 
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