Fed up !

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Fed up !

Postby blueeyes64 » Mon Feb 25, 2013 10:47 pm

The past few weeks I have had lower back pain which goes up into my left shoulder and neck, as well as the usual wrist, knee, hip, sciatica pain, blah ! blah ! You know what I mean.But the stiffness and constant pain every time i do anything is just getting me down a bit.When I saw the chiro he said my back was mis aligned and clicked it back into place, and when I went for my last session the other week (NHS only pay for 10 sessions) I mentioned the upper back and shoulder/neck pain.He said "no wonder" when he felt that area and said it was very taut.He cracked something there and it did feel better for a while, but the pain and stiffness always returns.
Plus I had that feeling of being bruised and sore all over thing to for the last few days, you know when even brushing your hair makes you want to scream ?

I've trudged on regardless whilst pacing myself a bit, but even when I go to bed I can't get comfortable.It feels like parts of me aren't in place if that makes sense ? Even my legs touching feels like an annoyance and which ever way I lie it is painful.Then when I do start to drop off I get one of those pains, the ones that make you jump, shooting, burning in random places like my big toe !
Think it may be time to admit defeat and go back to the GP and ask to see a rheumy.

I've been looking at hypermobility a fair bit recently as I am waiting for an appointment to come through for my youngest son who is now 13 to see a physio.
He gets a lot of joint pains and stiffness and has very lax joints that often give way, knee and hips problems etc.He also has eosinophilic oesophogitis too.He has flat feet and some of his joints are hypermobile (move and flex more than they should).

Anyway, how does the rheumy know if you have joint hyoermobility syndrome or fibromyalgia ? Or both ?
The symptoms seem similar and can overlap.
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Re: Fed up !

Postby LouLou » Tue Feb 26, 2013 12:21 pm

Hi blueeyes

I'm so sorry you are having a hard time right now, believe me you are not alone!

When I saw my Rheumy he said I had hypermobility which led to me developing FM (apparently this is common but that's just coming from one Rheumy) There are certain positions you should be able to move your hands/wrists/legs into that can suggest hypermobile joints. I was given a booklet about it but if you google it it should be on the net somewhere. Apparently if you can so so many of the positions out of the list then you are hypermobile.

My GP disputed this for my case as I can't do any of the movements at all and have never been able to do them as far as I am aware. When I saw this Rheumy he tried to push my legs and arms into these positions which resulted in me screaming the place down then not being able to move for a week! My Gp confirmed my diagnosis as FM caused by stress/trauma not hypermobility.

I know the symptoms of both a very similar but I think you can have both FM and hyper mobility, the difference being that with hypermobility you can move your joints in ways you shouldn't really be able to.

I hope that helps a bit? I may be a bit wrong in what I've said it's just from my experience and diagnosis.

Take care and I hope things pick up for you soon. I hope all is ok with your son too.

Lou
xx
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Re: Fed up !

Postby blueeyes64 » Wed Feb 27, 2013 1:10 am

Hi thanks.Yes I know about the Beighton scale and the new criteria.Apparently once you get to 50 (well I'm only 1 year off ) the criteria change as a lot of people stiffen up by then and can't do all the positions.One of my little fingers goes back a way and I can get my thumb almost down to my wrist.i dare say I could have done a lot more a few years ago too, but not now !
My daughter can get her thumb to her wrist and her jaw pops when she eats too.My youngest son is waiting to see a physio as he has awful painful joints for his age (13).He reached for a drink last night and pulled his shoulder out and it clicks now and is very painful.GP said it wasn't dislocated but may have come out and gone back in again (sub luxated ).
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Re: Fed up !

Postby Iceskatemum » Wed Feb 27, 2013 2:18 am

Hope you get everything sorted very soon Blueeyes listening to the tales of your family I was wincing in pain with every new condition. Must be very painful.

Remember a girl from school could press her thumb back until it almost lay flat to her wrist. At that stages it was just called double jointed .....am I right in thinking is that the same sort of thing as hypermobility?
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Re: Fed up !

Postby LouLou » Wed Feb 27, 2013 10:46 am

Oh blueeyes I am so sorry your family is suffering with all this pain I'm sending you all gentle hugs.

When I was at Primary school many many many years ago (well I'm only 29 but feel 89 with this pain lol) I used to do gymnastics and this is why the Rheumy said I had Hypermobility. But when I was doing gymnastics I was never exceptionally good at it and could never do the splits/bend my thumb back or do anything out of the ordinary. He wouldn't listen though and just based my diagnosis on that lol. He was adament that I was able to do those things even right in front of him when I was crying in pain and he was twisting and pushing me so much I was in absolute agony! My GP then re did the test on me and was much gentler and agreed that I definitely wasn't hypermobile, but as it is a common cause for FM symptoms he thought the Rheumy was just trying to base my diagnosis on something.

ISM, yes I believe Hypermobility is just a fancy word for being double jointed. I too had loads of friends at school in the same gymnastics club and they could do the splits and all sorts and I remember being so jealous. I would practise every night trying to do the splits and could never get very far at all. I only joined the club as all my friends had lol.

Blueeyes I hope you and your family get the diagnosis and treatments you need.

xx
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Re: Fed up !

Postby lolabolla » Wed Feb 27, 2013 10:56 am

Hypermobility or being double jointed as it used to be called can be associated with FM.

I was diagnosed with both FM and HMS by the rheumy last year.

I have always been bendy and even at 53 I still score 9 on the Beighton score and my thumbs still bend to touch my forearm :yikes:

If nothing else, I now know that HMS was probably a contributing factor in developing FMS and in hindsight I would have taken more care with my joints when I was younger rather than just pushing through the pain and subluxions.

It is only in recent years that HMS has really had any 'press' and the condition is now taken seriously and that the condition can be managed with the help of physio etc.

I wish that mine had been diagnosed as a child but my parents were told that it was just growing pains, it was not until the mid 70's that HMS was taken seriously.

Good luck

Lola xxc
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Re: Fed up !

Postby Iceskatemum » Wed Feb 27, 2013 11:01 am

HAve to say that the girls party trick use to make me wince.......i just couldn't believe it wasn't sore. ...it was like you say lolabolla she used to be able to put the tip of her thumb on her wrist amongst other things :yikes: :yikes:
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