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The UKFibromyalgia Forums • View topic - Not yet diagnosed. Would appreciate any replies.



Not yet diagnosed. Would appreciate any replies.

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Not yet diagnosed. Would appreciate any replies.

Postby Jonoh » Fri Nov 30, 2012 5:30 pm

Hi guys :)
I wasn't entirely sure where to post this, but I figured here seemed like the right place. Well, as you can see by the title, I'm not yet diagnosed. However, I have been to the doc and am currently going through various tests and things, results so far so good. I hadn't heard of fibro until today when I came across it in an internet search, hence leading me here. I know that I can't receive a diagnosis over the internet or anything, and I'm not looking for one. I'd rather get to hear your guys experiences to see if what I go through is similar.

So, I've been suffering from chronic pains throughout my body, some days worse than others but overall it hasn't been anything too severe. My question is really regarding a few odd things I've noticed about the pains. They can change in feeling (sometimes achy, sometimes burning), but my major concern is that the pains never really seem to occur in two places at once. It's more like it travels through my body. Does this sound like fibromyalgia? or is it unlikely to be? The pains do range from my head to the tips of my toes, but like I said never in two places at once. However, sometimes a certain area (like today on my right shoulder blade) will feel pain all day, whilst the others continue jumping around my body lol. Any answers would be greatly appreciated. :-D

Oh, I do also suffer from muscle twitches, sometimes stiff joints (especially fingers when cold lol!), some muscle weakness and some dizziness usually on standing. And one more weird thing I noticed recently, was watching tv and someone fell over, it made my stomach actually turn! lol. Again, thanks in advance for any replies.

Jonoh :-)
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Re: Not yet diagnosed. Would appreciate any replies.

Postby moonhare » Fri Nov 30, 2012 6:20 pm

Hi Jonoh,
You've done the right thing in going to your docs and having tests to rule things out, and you're also right in assuming you cannot be given a diagnosis on here, but support abounds on this site, and I for one have been truly grateful for it.

Having said all that, as a diagnosed fibromyalgic of some 11 years now, I can fully relate to every pain,ache, twitch, etc that you describe, and yes these things do move around - I call this condition a 'shape shifter' , and it can change from day to day or even hour to hour....it's maddening!

:goodluck1: with your tests :fingerscrossed:

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Re: Not yet diagnosed. Would appreciate any replies.

Postby tigger2012 » Fri Nov 30, 2012 6:21 pm

Hi

As you say we can't diagnose over the Internet but your symptoms do sound similar to fibro but there are also other conditions that could be the cause.
I'd speak to your dr and see what they say,they will need to test for other things to eliminate them before they can diagnose fibro as there isn't a blood test or scan that can diagnose it. It's diagnosed through elimination mainly,also referral to a rheumatologist can help to get diagnosis. Not all gp's believe or are aware of fibro so if u feel like your not being listened to see another.mine told me it def wasn't fibro for 3 years!!

Hope that helps a bit

Take care
X
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Re: Not yet diagnosed. Would appreciate any replies.

Postby Jonoh » Fri Nov 30, 2012 6:40 pm

Thanks alot guys! I can hardly believe that the pain moves around as it does. Mine feels as if constantly moving from one spot to another! I will definitely let you all know how the tests and stuff go, and thanks for the support in these tough times :mrgreen:
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Re: Not yet diagnosed. Would appreciate any replies.

Postby FluppyPuffy » Fri Nov 30, 2012 6:49 pm

:welcome: to the forum Jonoh :wave: :wave: I've moved you into here with this being your intro topic as it's a more suitable part of the forum.

Thank you for not expecting us to say if you have FM or not, you'd be amazed just how many people do think they can be told what is wrong with them based on a few words that have been posted :facepalm: :facepalm: :facepalm:

You've done the right thing in going to see your GP about your various symptoms and things, hopefully you're now on the path to finding the reason behind things :fingerscrossed: :fingerscrossed:

FM and a few other conditions have quite a number of overlapping symptoms, so whilst what you have described on here could be related to FM, it could also be down to something else. If, with reading things on here and other places, you feel that FM could be the reason for your various problems, the next time you go to see your GP you could try taking some info about FM with you, as well as some details of how and why you feel your symptoms match it. Hopefully from there, things will start gathering pace towards you finding out some answers.

Whilst you're waiting to get your answers, stick with us. There is lots of info and advice on here, and we do a good line in understanding and supporting others in similar situations as we all know a condition like FM can do to us and make us feel :tongueout: :tongueout: :tongueout:

Just ask if there's anything you want to know about and we'll try to help you with it :wave: :wave:


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Re: Not yet diagnosed. Would appreciate any replies.

Postby shazq » Fri Nov 30, 2012 7:17 pm

:welcome: to the forum Jonoh :wave:

Have a good read around the forum to see if you have any other symptoms then write them all down.

Here is a good site on symptoms of fibro, if you have a good relationship with your gp you could show them it and let them know how many of the symptoms you have.

http://www.nhs.uk/Conditions/Fibromyalg ... ptoms.aspx

This link shows some treatments used for fibro.

http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx

Some gp`s still dont believe in fibro so getting an understanding gp makes a big difference but if you get a gp who questions fibro mention that those two links i have given you are NHS sites. :mrgreen: :goodluck1: hope you get some answers soon.
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Re: Not yet diagnosed. Would appreciate any replies.

Postby Jonoh » Fri Nov 30, 2012 8:48 pm

Thanks again guys :wave:. 'Tis nice to feel so welcomed lol. FluppyPuffy, yeah I've been looking a lot at medical conditions and noticed the overlap myself. I was pretty certain I had multiple sclerosis until I came across fibro lol :-P. Shazq, I had a look through the NHS page you linked, and I certainly do have quite a few more symptoms! Namely, the pins and needles, tinnitus, anxiety and allodynia. With the latter, am I right in thinking like just having the back of my head against a wall can cause this weird painful sensation? Or like today I opened the back door, and the handle seemed to give me a pain in my hand? lol. I've also definitely noticed my symptoms get worse when exposed to cold temperature.

I do have a question for you guys if you wouldn't mind answering, I've been looking into fibromyalgia quite extensively now, and keep on coming across "pressure" or "trigger points." I think I've grasped what this is, but could someone just explain it a bit? Like if the pains are worse there how comes my hand hurt today and there isn't a trigger point in the hand from the diagrams I've looked at. Cheers.
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Re: Not yet diagnosed. Would appreciate any replies.

Postby FluppyPuffy » Fri Nov 30, 2012 9:47 pm



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Postby Jonoh » Fri Nov 30, 2012 10:51 pm

Ah thanks for clearing that up FluppyPuffy :) I couldn't resist and pressed on some tender points which did cause some pain, so I'll definitely mention fibro at my next appointment. Just a few more questions and I promise I'll stop, lol. One, is petechiae at all linked with fibro? I have a few red spots scattered around my body, and did ask about them at my last app. but it was dismissed, although I'm sure it is petechiae :dunno:. Also, does anyone experience chills? I feel as though I experience these often, especially when I feel any kind of temperature drop. And finally, with the pins and needles, does it JUST effect hands and feet (as it says on the NHS page)? Or could it also happen on legs/arms aswell? Sorry for the incessant questions, I'm just anxious about my results and the waiting is killing me LOL :oops:.
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Re: Not yet diagnosed. Would appreciate any replies.

Postby FluppyPuffy » Sat Dec 01, 2012 12:38 am

I don't honestly know about the petechiae Jonoh :-? :-? I haven't heard of it being related to FM, usually it's a sign of an underlying problem such as low platelet count, which could be due to autoimmune disorders, such as lupus or rheumatoid arthritis, a viral infection such a measles, or a side effect of certain medications. This is something that really needs looking into by your GP, just to be sure there isn't anything else at work.

Brain has now gone completely to mush so going to have to give the pins and needs and chills a miss for now. Hopefully someone else will be along at some point with a slightly less mushy brain who can help you with some answers :sleep: :sleep: :sleep: :sleep: :sleep:


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Re: Not yet diagnosed. Would appreciate any replies.

Postby juejue » Sat Dec 01, 2012 11:21 am

Hi jonoh,

Welcome to the forum, people are lovely in my experience on here. I can't answer about the pins and needles as I luckily don't get them, but as for the chills that is definitely an aspect of fibro for me, it's like your internal thermometer doesn't work, layers and lots of wheat bags on hand work to a certain extent for me with this. Wheat bags also great for the muscle pains.

I was only diagnosed about a year ago and the waiting is awful, and you spring from one possible diagnosis to another, hang in there though and hopefully you will get some answers soon.

Take care, Jue x
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Re: Not yet diagnosed. Would appreciate any replies.

Postby shazq » Sat Dec 01, 2012 4:54 pm

Hi Jonoh

I only get pins & needles in my hands & feet but others might have them throughout their body? fibro is a funny thing, it likes to keep us on our toes, its like no two peoples pain is the same, or in the same place. Some have all over body pain where as others might just have pain in the trigger/tender points.

I have all over pain 24/7.

Fibro does affect our bodies in change with the weather, i always know when its going to rain because i get extra achy. Our thermostatic is broken so we cant control our body, in the winter i have to wear more layers, i always have cold hands/feet/nose. and i hurt so much more, the pain goes right to my bones, i try not to go out, i have to have the heating on most of the time.

The winter months seem to drag you down as well.

Not sure what your spots were?
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Re: Not yet diagnosed. Would appreciate any replies.

Postby Jonoh » Sat Dec 01, 2012 5:22 pm

Thanks guys for all the helpful info! Certainly helping ease my angst a bit (just knowing I'm not the only one going through these symptoms, even if it isn't down to fibro lol). I'm still not sure what the spots are either, the doc said it isn't petecheia so I'm trying not to worry too much about them (easier said than done :-p) and I guess the blood works will reveal all.

Shazq, when you say you can't control your body in the cold do you mean like literally? Shaking sort of thing? Or just that the pain gets worse?
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Re: Not yet diagnosed. Would appreciate any replies.

Postby Jonoh » Sat Dec 01, 2012 5:25 pm

Sorry for double posting but I must also say my heart goes out to you all too for suffering with this. I guess I'm pretty lucky in the sense that yeah, the pain is there, it isn't really severe enough to be debilitating or anything. So yeah, ya'll pretty amazing peeps :-D :-D
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Re: Not yet diagnosed. Would appreciate any replies.

Postby shazq » Sat Dec 01, 2012 5:53 pm

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