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The UKFibromyalgia Forums • View topic - Do I have Fibro?



Do I have Fibro?

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Do I have Fibro?

Postby jo*jo » Sun Jul 15, 2012 10:32 am

Apologies if I have posted this in the wrong section.

I was diagnosed as having joint hypermobility syndrome last year by an NHS rheumatologist and I've had many sessions with a physio but something is getting worse and I know that FMS can be connected. I would appreciate it if people would look at my symptoms to see if you think I have FMS as well. My osteopath thinks perhaps I do and I am seeing a private rheumatologist in a couple of weeks time, who specialises in this area but in the meantime I would like to have some sort of idea and how to possibly deal with it until then.


Stiffness and aching in my upper back began around 7 years ago. I visited an osteopath regularly, almost every week as symptoms kept coming back. Then for some unknown reason I never had any problem for a few years, particularly whilst going to the gym. Then I stopped going to the gym and problems reappeared and more so. I am 32 years of age.

Sometimes I have been unable to walk very far due to very bad stiffness in thighs and hips. I was diagnosed with flat feet and was given orthotics which improved the symptoms alot but they are still there when I go on long walks or big shopping trips. When I see my osteopath (for other things as well as this) she says my hips are "out of alignment", so she puts them back into place by manipulating my sacrum joint and I go away feeling better. More to come on this in a moment though.

More recently I have been getting bouts of pain and stiffness in my neck. It first happened after long periods of slouching in front of the laptop and long periods of bending over gardening. I woke up unable to move my neck one day and the osteopath gave me her treatment and in a week I was back to work and had no further problems for a year. The NHS physio helped me with my posture which has greatly improved and i try to not slouch at home in front of the tv and laptop but I have had a few bouts (of what I have been told are HMS flare ups, particularly muscle spasms) this year. At the moment my neck, shoulders and shoulderblades are the most problematic with pain and stiffness. Last week, in the middle of a flare up I had pain and stiffness in the right shoulderblade which was stopping me moving my neck to the left. I also get occasional pain, stiffness, shooting pains and numbness in my hips, thighs, lower legs and knees. It decreases with regular exercise.

Osteopathy has improved and got rid of these symptoms in past but a few months ago I experienced more pain than you usually get afterwards, in my hips and knees.
Currently I have seen an osteopath 3 times in the last 5 - 6 weeks and my symptoms keep returning after about a week. This is what makes me think perhaps I do have FMS. The flare up last week that I just mentioned is still ongoing. Its in the right shoulderblade area. Although I left the osteopath after 45 mins of massaging and manipulation, able to stand up straight again, I was still unable to fully move my neck to the left. She told me to do exercises to move it to the left regularly and it has worked to some extent but the stiffness and pain is still there and when I do it it hurts my right shoulder blade. I find sitting down, even with correct posture, hurts my upper back and neck, sometimes giving throbbing sensations if i do it for too long. Laying down flat on my back in bed for a few hours helps both that and the shoulderblade, and yet when I wake up in the morning after being flat on my back all night, the problems are worse yet again. Although I have to say that I am not so stiff that I cant use my arm. Its stiff to the point of moving my neck to the left (the muscle in my right shoulderblade seems to pull when the neck moves) and generally hurts and aches.

I feel very new to this and am still trying to work out when things are worse, better etc.

I have been told that regular exercise to build up my core stability and in particular the muscles around my upper back and legs, thighs etc should greatly improve things and I will be beginning this next week hopefully.

Does this sound like FMS at all?
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Re: Do I have Fibro?

Postby crazycat36 » Sun Jul 15, 2012 11:27 am

Reading ur story sounds like my own before i got diagnosed and drs just kept tellin me id pulled different muscles although id done nothing to do this, from that they started sending me for loads of different tests and eventually it was decided i had fibro it took them bout 6months of pestering to give a diagnosis and hence got it very quickly thinking id get the help i needed turns out though knowing what it is isnt really helpful as theres nothing the drs can do to help except fill u up wi pain meds and anti depressants to wake u up and help u sleep but nothing really helps for fibro for me.
I wish u luck in ur journey and i pray u find sometging that helps u....i started out full of optimism that id stumble accross stuff that would help but nearly 6yrs later and still nothing much really helps
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Re: Do I have Fibro?

Postby masonsbarms » Sun Jul 15, 2012 11:30 am

hi jo, you do sound like you have some of the symptoms but you will have to wait and see sorry,

all i can sat is in the mean time pace yourself and try not to overdo things,

make a list of all the problems you have been having not just about the pain and stiffness,

if you have been having other problems like with you sleep fatique or anything else even if you dont think its relevent.

it is a hard long slog as most of us have found out to get to the bottom of things.

i would say to get someone to go with you for support.

i cant think of anything else.

take care and i hpoe all gose well xx
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Re: Do I have Fibro?

Postby denys » Sun Jul 15, 2012 11:58 am

Sorry Jo we cant say one way or another whether you have FM as we dont know you and just an online community. FM symptoms overlap so many different conditions that until the medical profession have ruled all of those out then it would be very wrong to say you have FM.

Most of the other conditions can be ruled out with blood tests and scans but this can take an awful long time and it is really frustrating, I hope you get some answers soon but in the meantime :welcome: to the forum :wave:

I moved you into here with this being your first post, so hopefully you'll get many more welcomes and we'll be able to help support you until you have a diagnosis either way :-D :-D :-D :-D :-D
Denys

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Re: Do I have Fibro?

Postby scoke » Sun Jul 15, 2012 12:04 pm

as masonsbarms says. try to rest and relax and keep a diary - and it is worth mentioning everything - allergies/sensitivities, soreness, twitches and itches, catarrgh (how do you spell it? can't today!!) nails, stomach as well as non-physical problems - there are lots of symptoms and some are very obscure so miss out nothing you think is unusual (even if it's usual for you by now, might not be for most people).
Unfortunately an FMS diagnosis is only really good in that it explains all your odd symptoms but it is not curable and can be difficult to treat as we all have different reactions to drugs and other treatments - you have to find your own way - but this site helps with tips as to how everyone else has coped with specific problems.
The fact that you've been symptom free for large bouts of time doesn't negate the possibility that it's fm as many of us have discovered it can appear to get better, only to return with more symptoms and more severe ones too.
Good luck in your appointment and treatments - hope you get an understanding and helpful professional to guide you through whatever it is and don't forget this forum - always help, support and understanding on here!
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Re: Do I have Fibro?

Postby Dazed&Confused » Sun Jul 15, 2012 12:27 pm

Hi, Your pain symptoms are very similar to mine but there are so many other things that usually come with them. I have visual problems, poor memory, lack of concentration, swollen glands, intermittent thyroid problems and panic attacks. Not to mention spending more time asleep than I do awake. A consultant will consider all your symptoms before making any diagnosis. When I was finally diagnosed after around 5 years of the pillar to post route I couldn't believe that nobody else had spotted my problem. I still don't feel much better but at least I now know what's wrong with me.
Hope you feel better and get some answers soon,
John.
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Re: Do I have Fibro?

Postby FluppyPuffy » Sun Jul 15, 2012 12:27 pm

:welcome: to the forum jo*jo :bear-dancing: :bear-dancing: :bear-dancing:

Sorry to hear what you're going thru at the moment, we're good with support and understanding on here, so stay with us, and we'll try to help you with things :grouphug: :grouphug: :grouphug:

I hope you'll appreciate, as has already been mentioned, that it's not possible for us to say whether you have FM or not :facepalm: :facepalm: :facepalm: To tell you the reason for your symptoms and problems, you need to see a medical professional, such as the rheumy you've mentioned, and even then it doesn't tend to be a straightforward or quick process. There are several conditions that have very similar symptoms to FM, and these need to be investigated, then discounted, and it's only after that has happened does an FM dx come about.

You've already been given some good advice about things, so there's not much more I can add. All I will say is have a look and a read around the forum as it is packed with info and advice on all sorts of things, and you may find some suggestions that could help you :fingerscrossed: :fingerscrossed: :fingerscrossed:

Anything else you're wondering about, if you just ask about it, we'll try to help you with it :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:


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Re: Do I have Fibro?

Postby fatalrazkaz » Sun Jul 15, 2012 1:43 pm

Hi hun. To be honest, going on just the symptoms you have said, I would not diagnose FM. There are so many more problems in FM than just pain. Chronic tiredness is usually present and muscle weakness, as in my arm aches when I clean my teeth and when drying my hair with the hairdryer. There are points on the body which are very painful to slight pressure e.g. the little dimples either side at the bottom of your back, either side of your spine level with the shoulder blades, on the chest just above the breasts. As someone else has mentioned memory loss as well, caused by lack of sleep. People with FM can usually fall asleep quite easily but cannot stay asleep due to not going into dream sleep stage, waking several times a night. I also have osteoarthritis and to be honest I think your symptoms sound more like that. If your consultant specialises in FM they will do all the tests needed to diagnose. As others have said its not really possible to diagnose online but I hope for your sake you dont have it. After being fobbed off by Dr. after Dr. (I didnt have a clue what was wrong with me but kept having arthritis blood tests to no avail and I have an underactive thyroid so that was confusing them with the tiredness) I was finally diagnosed after telling my sympyoms to another Dr. in Dec 2011 who immediately said he was refering me to rheumatology to see if I had FM. I had never heard of it before then but by the time I was diagnosed in Feb of this year I had been suffering for 20 years. Good luck hun and hope to god you are not diagnosed with FM x
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Re: Do I have Fibro?

Postby shazq » Sun Jul 15, 2012 3:16 pm

:welcome: to the forum jojo

Hope you get some answers soon. :goodluck1:
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Re: Do I have Fibro?

Postby jo*jo » Sat Nov 24, 2012 8:19 pm

Well its taken me a long time to reply, but here I am. I am very grateful for everyones responses. At the time I just wanted to see if my symptoms made any sense to anyone and it seems they did.

I was diagnosed by a rheumatologist in July and have been on nortryptiline ever since. It turns out that I have more symptoms than i realised. Other than what i have already described, I have 12 tender points and have suffered with bouts of fatigue in the past but never thought very much of them however I definitely notice now that i can do very little and the fatigue can hit just like that.

I was put on 20mg nortryptiline initially but had to increase it to 30 and I go to the gym where I have been given a set of exercises to strengthen and mobilise. The first 6 weeks were good (i was initially put on a 12 week program) and by the end i was desperate to increase them as i felt little side effects. But the exercises were increased too much and after 3 sessions i had a flare up. Its very frustrating because theres me in my early 30s walking a snails pace. But i'm assuming everyone finds similar things here. I had to go back to the instructer to give me easier exercises again. The rowing machine really was the worst and i dont plan on using that for a long time, if at all.

Its been hard having to pace myself but i think i'm used to it now. One day i did 20 mins at the gym, a leisurely walk around town and came home and did some baking. THAT was too much for me and at 6pm during the baking i had to stop everything and go to bed. Crazy but i accept it now.

My main issue is still my neck and upper back and the idea of the gym is to strengthen the muscles in order to reduce the risk of flare ups and reduce the length of them if i get them. It seems to be that my muscles are pretty weak from all the flare ups and i have complained of this for a long time. Putting my hair up would really tire out my arms but the physio i saw dismissed it. Now its worse where they ache just for lifting my arms above my head. Most days i have symptoms. Burning, aching, pain, tingling, numbness etc. I have moved on from having the mind set that if something aches or hurts, it must need manipulating by an osteopath. Now i realise that its just how i am, pretty much, I'm also on diclofenac and cocodamol when necessary and that helps.

When i returned to work after 4 weeks sick i was put on light duties. My job is very repetetive and isnt really conducive to this condition, especially as it involves alot of work with my arms which isnt good for my unstable shoulders. I'm still on light duties until next week when my two special chairs and desk equipment finally arrive. When i was on the very light duties i was symptom free - brilliant. Guess i should take note really. I returned to work in July and i dont feel that i've improved very much really.

The nortryptiline has improve things alot compared to how i was and is supposed to reduce the risk of flare ups and i think its done its job because that flare up i mentioned after the gym wasnt as bad as i was expecting it to be. Plus, two weeks ago i had a shunt in my car and was diagnosed with minor whip lash. If i hadnt been on the nortryptiline i think i would have had a full blown flare up - muscle spasms in my neck, reduced mobility, pain stiffness and aching etc. I'm still recovering from that and i had my first day of almost no symptoms yesterday but i worry that this is gonna go on forever.

The rheumy said i should only be on the nortryptiline for 6 months to get me out of that "dark period" where i was having flare up after flare up. After that he says i should have less of them and when i have them they shouldnt last as long, but i worry. I think i'd rather be on them for life but i guess there's a reason that i shouldnt be.
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Re: Do I have Fibro?

Postby FluppyPuffy » Sat Nov 24, 2012 10:25 pm

I'm on nortriptyline and have been on it for a lot longer than 6 months, More like 2~3 years, so it's quite possible you could be on them longer than the 6 months your rheumy has said. However long you do end up taking them, I hope they carry on helping you8-)8-)

Sent with lots of love from LaaLaaLand xx


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