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The UKFibromyalgia Forums • View topic - My Experience Of Fibro.



My Experience Of Fibro.

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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My Experience Of Fibro.

Postby Deano78 » Fri Feb 06, 2015 3:27 pm

Hi all,

I am a newbie on here and just thought i would let everyone know what i have been going through for the past 3 and half years. There are 2 or 3 moments when i think the fibro might have started.

First was when i noticed a pain when i lightly brushed the side of my head near my temple whilst in the shower and ever since then i have had a sensitive area of skin around that area whenever touched . The next is when i was trying to inflate a football with a broken pump and i just kept pumping and pumping and getting nowhere, the next day i had terrible pains in my arms and chest and back.

The last one is through stress when i went for an MRI scan about the pain on the side of my head. The nurse couldn't get the needle in my veins to do a blood test so i had to go to my local GP, the hospital where i had tried to have the blood test done gave me a bit of paper which said all of the things they were testing for, so naturally i went back home and looked all of the conditions up on the net and worried myself into a depression thinking i had all these different things wrong with me!!

I had blood tests and an MRI scan done all of which came back fine. I got referred to a Rhuematologist after about a year and it was then that i was diagnosed with fibro. I have never had any treatment for it since i was diagnosed until now as i have started taking Fluoxetine. I am tender in all of the Fibro tender spots and basically ache to the touch all over my body!! From head to toe the pain i have varies each day.

Headaches that ibuprofen and paracetemol dont touch. Pain when touching the side of my head, pain in muscles in my throat when lying down for so long, pain in my neck muscles on both sides, pain in shoulders and top of arms (tricep area), pain in shoulder blades and along either side of my spine, pain in ribs back and front both sides when touched, buttock and hip pain, pain in thigh when twisting leg, kneecap pain and pain in fingers and big toe!!!!

Then there is the dizziness, tiredness and ibs problems!! From my experience i know that my flare ups seem to be from weather, exercise and stress. The only things that seem to help with my fibro are hot baths and when im asleep!!!! I used to be a happy go lucky, confident, sociable and active young man and this horrible illness has made me go into a shadow of the person i was.

I try and exercise by going swimming and on the treadmill but you only need to over exert yourself once and it throws you back because you cant do anymore because of the pain. Its just one vicious circle!! I wouldn't wish these feelings on my worst enemy. I feel alone as from the outside you just seem like everyone else but no-one knows the pain you are going through!!

My main pains are my headaches, neck, shoulder, sharp pain every so ften in chest, ribs always feel tender to touch, and back. Also feels like i have got tender bones along my spine when pressed!! Thanks everyone for reading this and if you have had similar experiences to mine or could reccommend anything for me to try or do then please let me know. Thankyou and gentle hugs to all of those suffering with this!!!!
Last edited by denys on Fri Feb 06, 2015 3:42 pm, edited 1 time in total.
Reason: Broken up the paragraphs to make reading the post easier
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Re: My Experience Of Fibro.

Postby denys » Fri Feb 06, 2015 3:44 pm

Hi sounds familiar, I have broken up the paragraphs of your post as another symptom is the inability to concentrate long enough to read big blocks of text :-D
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Re: My Experience Of Fibro.

Postby ixel-chick » Fri Feb 06, 2015 3:48 pm

Hi there Deano - and welcome to the forum!

I used to get migraines... such awful things. I've never had that problem before, and am not even one that would normally get headaches often. I tried painkillers for them, but it didn't work. Only thing that would get rid of them was sleep. Of course falling asleep isn't the easiest thing in the world when it feels like your skull is filled with shattered glass and someone's given it a good old shake. :lol:

Is the Fluxotine helping for the fatigue?

I tried an antidepressant for the fatigue, before going on the tabs I'm now on. After doing reasearch I wanted to try either Fluxotine, Sertraline or Paroxetine. After discussing the three with the doc, I got a prescription for Sertraline. It did take my fatigue away, but did nothing for the pain. It did however make me terribly depressed, so I came off them.


Different things work for different people, so it's it's more of a trial and error, to find something that works. Like the Sertraline, which I had to stop. But other's might not have such a bad reaction to it as I had, and it might be very useful for others to get rid of the fatigue. :-)
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Re: My Experience Of Fibro.

Postby Deano78 » Fri Feb 06, 2015 3:52 pm

Thanks denys, i'll keep this in mind when doing anymore posts altough i dont think i'll write as much next time now i've gotten all that off my chest!!!! :-D
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Re: My Experience Of Fibro.

Postby denys » Fri Feb 06, 2015 3:54 pm

:lol: :lol: :lol: :lol: :lol:
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Re: My Experience Of Fibro.

Postby jinnty8 » Fri Feb 06, 2015 4:00 pm

My experience is exactly the same some days i am in so much pain someday i could die i have copd which cuts out any exercise the pain killers and sleeping tablets dont work i used to be heart and sole of the party now i am a moaning grumpy pig
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Re: My Experience Of Fibro.

Postby eileen4891 » Fri Feb 06, 2015 4:05 pm

Hi Deano you have just described me and my body . its trial and error with the meds not every body reacts the same duloxatine seems to work for me along with Tramodol Paracetamol . Trazodone Nortriplyne all for pain . . meberine I take for IBS take care x no
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Re: My Experience Of Fibro.

Postby Deano78 » Fri Feb 06, 2015 4:11 pm

Thanks for the reply ixel-chick,

I have seemed to suffer a lot with headaches since i was little, i remember always getting a headache when out shoping with my mother or being in smoky and stuffy environments. I went to the docs and they said about cutting out cheese, fizzy drinks, orange squash and chocolate!! Whenever i get headaches now it seems to make the sensitive pain on the side of my head worse.

The Fluoxetine is being used for the muscle pains, so my GP says. I too had been on sertraline when i went through a bout of depression and it worked ok for me. People just react differently to the same types of medication. Seems like every time i go to the docs with anything they just say, "Oh, it's the fibro!!!"
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Re: My Experience Of Fibro.

Postby Deano78 » Fri Feb 06, 2015 4:18 pm

Thanks for the replies jinnty8 and Eileen4891,

I too feel like a moany grumpy pig and also feel like people think there is nothing wrong with me and that i am just whinging!!

Eileen it is comforting to hear that someone has the same pains as i do as i am always still thinking in the back of my mind, "What if it isn't fibro!!" But then thats probably the health anxiety in me coming out!!

Take care all :-D
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Re: My Experience Of Fibro.

Postby ixel-chick » Fri Feb 06, 2015 4:33 pm

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Re: My Experience Of Fibro.

Postby Deano78 » Fri Feb 06, 2015 4:35 pm

Just one more thing to add, does anyone suffer with swollen lymph nodes??? I have one in my neck, groin and armpit that are permanantley swollen and have been for at least 2 years (first time i noticed them) Just wondering if they are a symptom of fibro??
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Re: My Experience Of Fibro.

Postby Deano78 » Fri Feb 06, 2015 4:59 pm

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Re: My Experience Of Fibro.

Postby ixel-chick » Fri Feb 06, 2015 5:13 pm

The good thing about side effects is that they're just that - just your body reacting to a medication, not something actually going wrong all by itself. :D

Fingers crossed it will work for you!
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Re: My Experience Of Fibro.

Postby Annie54 » Fri Feb 06, 2015 6:09 pm

I was on fluoxetine for chronic depression for several years and I found it also helped a lot with the fibromyalgia pain. After I was made redundant from work and in effect took early retirement I chose to come off the fluoxetine and I'm fine with that but I have found the pain levels have increased again.
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Re: My Experience Of Fibro.

Postby claudine1288 » Fri Feb 06, 2015 7:10 pm

Hello Deano,

I've got to hand it to you: you wrote a letter which describes the pain of fibro perfectly. The worst aspect is the feeling of loneliness it imparts since on the outside we look absolutely fine, if occasionally peaky. But indeed feeling one is merely the shadow of oneself is the hardest thing to bear, I think. It does help to share those feelings with people who know about the experience, and it certainly helps to show these letters to one's entourage, as others cannot really understand the devastation fibro may wreak.

I have had the lousy illness for over thirty years now. It wasn't diagnosed immediately and that was in fact much worse, since for seven years, I kept hearing doctors telling me either that it was all in my head, or that I was suffering from "women's problems"! At least now we are offered the dignity of suffering from a named illness :lol:

Hang in there. You'll have to try the medications that are best for you, as this is all very individual. Make sure you sleep enough: there is a correlation between pain and insufficient sleep (or poor quality sleep.) My thoughts are with you,

C.
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