# Have a question for Fibro sufferers...



## Screamer (Aug 16, 2005)

Hi all. I hope this isn't too forward but I'm just wondering if ALL of you have the sore pressure points?I have a lot of trouble sleeping, when I do it's light sleep and I usually wake up feeling like I've been hit by a bus. I also get really tired really quickly. I used to be able to shop till I dropped, now days 1/2 an hour and I come home needing to go to bed (not that I can with 3 littlies). Finally I don't get migraines but I do get a lot of headaches and I ache, ache, ache. Sometimes in my shoulders, mostly from the waist down. It sort of feels like my bones are aching, weird feeling, and it stops me from sleeping cause they hurt so bad.I brought it up with my doctor but he said that cause I don't have the pressure points that it's definately not Fibro and was very dismissive about the whole thing, kinda like "oh you already have IBS, how many syndromes do you want?" He's normally great but this day he made me feel awful. So I was just wondering how it is you people with Fibro feel and whether or not your pressure points always hurt? Thanks for info and advice


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## M&M (Jan 20, 2002)

Hello, and welcome to the forum!







Here is a link from the "Fibromyalgia FAQ". It explains the diagnostic criteria for Fibromyalgia.http://www.fmnetnews.com/pages/criteria.htmlAs you can see, 11 of the 18 tender points must be present to warrant a diagnosis of Fibromyalgia. If you don't have them, then you don't meet the diagnostic criteria for Fibromyalgia.That being said, there are a lot of different illnesses that present with the list of symptoms you mentioned. You may have an underlying sleep disorder - those cause a lot of body aches and lots of just generally feeling bad. You may also have something like Myofascial Pain Syndrome, or a thyroid condition, or an arthritis problem, or a million other things that have the symptoms you mentioned. My advice to you is to keep working on getting a diagnosis, and to keep being an advocate for yourself. My hope is that you will be able to figure out what is going on, and get it treated.When I first started having lots of health problems, I kept a log of my symptoms. I wrote down everything I was feeling everyday. After a couple of months, I had a very extensive sketch of what I was going through. Then, you take the log with you to the doctor, and your accurate information will guide the doctor to the right diagnosis. (If all goes well)Keep hanging in there, and keep us posted as to how you're doing!


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## Screamer (Aug 16, 2005)

Thank you M&M. I will keep on at him about it and hope that he realises that maybe there is something more than IBS at play. We'll see. Maybe it's just my IBS that makes me feel this way.Thanks for the links and info. It's much appreciated


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## M&M (Jan 20, 2002)

Good! I hope you do stay on top of your doctor, they have a way of forgetting things from one visit to the next. And I'm sure you've got something going on besides IBS...IBS wouldn't cause the pain that you're dealing with.This morning I also had another thought - The pain you mentioned reminded me (at least a little) of Lupus. So I found you a link for that too: http://www.lupus.org/Obviously I'm not a doctor, but I did think of that possibility, so I thought I'd get you a link.It's so frustrating to be so sick and not know why. I hope you can soon help your doctor find out what is going on, and that you can then start getting treatment for whatever it is. Keep us posted!!


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## Screamer (Aug 16, 2005)

Thanks again. I am visiting a new doctor tomorrow afternoon as mine is on sick leave until mid October so I'll maybe get some more out of him (he's an old family friend/family doctor of DH's entire family).Thanks for the lupus link. I don't get skin rashes all that often however I do find that my ummmm wee often smells funny which I've quite often wondered if my kidney's work properly. I'll bring it up with him though and see what he says. Sorry it took this long to get back to you. Had a crazy day yesterday and barely managed to glance at the boards


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## Clair (Sep 16, 2000)

Hi Screamer







your post really struck a cord with me because it sounds almost identical to how I used to feel going through an ME/CFS flare up.I too have very light sleep and wake up feeling worse than when I went to bed... and then there is the terrible headaches which come out of nowhere







The shopping thing was exactly the same with me go shopping and have to come home and sleep for four hours afterwards.I also used to get (an intermittently now do get it once in a while) pain in my legs which feels like is my bones...dont know what your pain is like but mine is almost sharp and agonising and shoots down both of my legs and I cant get a comfortable resting position in bed.I have never met the diagnostic criteria for fibromyalgia (due to the pressure point thing)but I do believe there is an overlap between ME/CFS and fibro. Perhaps you fall slightly into both brackets and not solely into one and thats why your doctor dismissed the Fibro?I don't think I purely fit the ME/CFS mould I think I have some Fibro stuff in there too...I know none of this is much help to you but I can truly understand where your coming from and wish you all the luck in getting a better doctor on your quest for answers.Hang in there ((hugs))Clair


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## Screamer (Aug 16, 2005)

Thanks ClairYep my legs are a killer! They just ache and ache all the time. I stretch them out and they feel better for 1/4 of a second and then go right back to aching. It's not my muscles that hurt though, it feels deeper than that. It sort of starts in my lower back around my kidney area and it's there 24/7. Sometimes it's shocking and others just annoying but it sucks! I've tried light exercise to try and ease it up but I find that even a gentle short walk makes them ache more! Sleep for me, well, I'll be exhausted most of the day (when I'm not on my anti deps) then bedtime comes and I'm SO awake. Once I finally do fall asleep I don't feel like I have slept and have dreams ALL night long. Many, many of them. Hope you feel better soon. I've heard magnesium is very good for muscle ache but I can't take it as I'm a D and it really makes me go!


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