wrist...

For all your questions and experiences of illnesses associated with FM e.g. thyroid, IBS, TMJD etc.

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Postby LinzWorld » Fri Jan 23, 2009 8:45 am

Hon, with EDS, it may not have got back in right or you may have torn something. Get it checked out!
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Postby Lucy-Lemon » Fri Feb 06, 2009 3:46 pm

well you will be pleased to know my GP came to see me today :)

she took a look at both wrists (had another wrist incident on saturday night - not nearly as bad as my right hand but sounded like someone putting salt/pepper on their dinner with one of those thingys that click when you twist them :shock: :lol: )

she doesnt think there is a problem, and says i've been doing the right thing by just trying to keep them mobile and moving. the pain isnt so bad anymore, still can't pick up drinks or hold cutlery in my right hand but i do use it. and my left wrist is just tender, thankfully. it scared mum though, she keeps treating me like a china doll :lol:

anyways my GP was really good, she sat and listened to everything we had to say, took it in and has got/is getting everything sorted :)

she's given me a prescription for:
    - some new medication for my mouth - although she can't understand why the stuff we've tried hasnt worked (she said we've tried everything on offer ). so she's prescribed something for the ulcers rather than the thrush (if thats what it is) to see if it helps.
    - a new shampoo to try to see if it will clear up this rashy thing i have on my scalp which is driving me insane, and some cream to rub into it.
    - some steroid cream for the rash i have (well keep getting) on my face and sometimes my arms but i can only use it for a very short period of time.
    - some new antibiotics for the infections in my toes, told me to carry on with the cream and is going to chase up the podiatrist for us.

so things might start easing/getting better. i hope so anyways, as without all the above i seem to be getting worse :cry:

oh and the new wheelchair i was meant to get in october is ready to be picked up, i go for the 'fitting' some time his month. its meant to be a much better wheelchair, lighter, better back support and might actually be a wheelchair fitted to my measurements unlike the last one :roll:

take care everyone
Lucy x

* im using words like meant and might because i wouldnt be surprised if they got it wrong with the wheelchair again, or theres a problem or whatever :lol:
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Postby Corinne » Fri Feb 06, 2009 4:22 pm

Lucy,

I know you've had all the tests going etc & about the EDS, but I cant help wondering with all the symptoms you've just described whether you ought to be tested again for Lupus.

The ulcers, rashes, scalp etc all rings alarm bells for me...

I'm not trying to be a scare-monger, but I've heard of a few people with similar symptoms recently being diagnosed with Lupus after the tests coming back clear in the past. It may be worth asking about anyway.

I'm glad the wrist problems seem to be easing, even if its slowly & I really hope they manage to sort you out a decent wheelchair soon!

Corinne x
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Postby Lucy-Lemon » Fri Feb 06, 2009 4:44 pm

i didnt want to say anything but yes lupus has been mentioned. my gp mentioned it today, and thinks i should be tested. i actually havent been tested for anything yet, which surprises me as i read that most people have a blood test for something or another :? doctors have only ever made decisions from looking at me and listening to what i have to say.

i dont really know whats going to happen, or whether she is definitely going to get a test sorted, but she did say she thought i should. my nan has been on at me about lupus since before i got the fibro diagnosis (she used to be a nurse), but i didnt look it up until earlier this week. i just really hope it isnt... :cry:

thanks,
take care,
Lucy xx

edited to add: mums just confirmed my GP wants to try all these lotions and potions she's prescribed to see if she can clear things up before we consider getting me tested for lupus, so we'll see how things go.
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Postby Corinne » Fri Feb 06, 2009 6:18 pm

I'm surprised you haven't had more tests before now Lucy!! :shock:

Considering how ill you've been at such a young age I would've thought it would be a priority! :?

If you do have blood tests, ask them to look at everything -Lupus & other autoimmune problems, RA, inflammation etc (I'm sure they will now anyway) as it seems odd they havent done all this before.

I know Lupus sounds nasty but I know several people who have it & they manage as well, if not better than most of us with Fibro (with the right medication & careful monitoring) so try not to worry :wink:

Corinne x
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Postby Lucy-Lemon » Fri Feb 06, 2009 6:41 pm

Corinne wrote:I know Lupus sounds nasty but I know several people who have it & they manage as well, if not better than most of us with Fibro (with the right medication & careful monitoring) so try not to worry :wink:


ill try not to worry, but we all know thats easier said than done :lol:

thanks Corinne

Lucy x
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Postby star » Sat Feb 07, 2009 12:43 am

Hi, Lucy-Lemon,
What a rotten time you are having! You must be completely miserable yet you always sound cheerful and upbeat when you post.
I have some symptoms like yours but I am sure I have been tested for Lupus and the result was negative.
I have thrush, ulcers and frequent recurring abcesses in my mouth too. I find that Diflam mouth rinse helps as it has an anaesthetic in it. It is more normally prescribed for throat infections. The flavour is very strong and lingers in your mouth but I think it does bring some relief.
I have elocon ointment for my rashes but I have never had any spots on my face. My cousin has Lupus with the characteristic 'butterfly' shaped patch of spots across her cheeks but has no problems inside her mouth.
I had lichen planus (a neck to toe, red, nippy/itchy, bleeding, flat blister type of skin condition) twice last year and was prescribed steroids each time by a dermatologist.
Don't know if this information is of any help to you in narrowing down the causes of your own problems. If not I hope someone comes online soon who can help you more.
Good luck and take care.
PS.The wheelchair manufacturers might make a 'mistake' this time and accidently get all the measurements correct! :lol: You never know!
Learn to live in the world with hope, love and peace but do not let the rest of the world live too much in you. Take time to enjoy your own company and be your own best friend for life.
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Postby Lucy-Lemon » Sat Feb 07, 2009 1:08 am

oh diflam, i dont have the mouthwash of that i get it in the little sprays so i can use it as and when. it brings very little relief, if any, although i dont mind the taste. :lol:

thanks for telling me all of this, any snippets of information are good :)

i hope the wheelchair company make the mistake of getting it right :lol:

thanks, and you take care too
Lucy xx
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Postby gillshutt » Sat Feb 07, 2009 8:18 am

Hi Lucy, so sorry you have been having such a hard time of it lately (((xxx))) Hope they start to get better for you and the wheelchair has racing stripes :D

Thinking of you.

Gill x
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Postby samantha louise » Fri Mar 13, 2009 2:24 pm

how are you feeling now lucy hun
samantha - louise
and my two little wiggles!
xxx

fuddle off... no,... YOU fuddle off!!
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Postby Lucy-Lemon » Fri Mar 13, 2009 2:56 pm

erm...the joint popping has got a fair bit worse - i'm like a little orchestra everytime i move :lol: its funny to think about, but painful when it happens. the pain in general has also got worse, i seem to be going through a rough patch with everything at the mo.

however, despite everything seeming to slide, the muscles in my legs are alot stronger - although mum still has to help me up she isnt pulling me anymore, she's mostly there for balance. so fingers crossed it will carry on so ill be able to get up on my own. :)

oh and got my wheelchair, they got it right finally :wink: unfortunately no racing stripes though Gill. :(

i finally had a blood test done yesterday so we'll see what the results bring. and im back up at the UCHL next wednesday for a checkup, not expecting much from that though.

apart from that i have a mountain load of coursework to do, worst bits being a gothic horror essay for english due next week and a sociology project to do research for :?
(which i am meant to be doing now :oops: :wink: )

thanks for asking, sorry i rambled on a bit
take care
Lucy x
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Postby LinzWorld » Fri Mar 13, 2009 3:35 pm

Lucy, I may have missed somehting but has HMS or EDS been properly considered?
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Postby Lucy-Lemon » Fri Mar 13, 2009 3:50 pm

LinzWorld wrote:Lucy, I may have missed somehting but has HMS or EDS been properly considered?


both have. i've had HMS on my notes since i was very little, it was formally diagnosed in 2007, and then EDS type 3/hypermobility was diagnosed by Professor Grahame last october.
Only thing is, my consultant at the UCHL (not Prof. Grahame - we paid one off to see him privately) wont mention it. i dont know whether thats because he doesnt want to admit he was wrong (he never even examined my joints and still hasnt) or whether he disagree's with it.

i'm kind of confused as to who thinks what to be honest.

i hope that makes sense :oops:
Lucy x
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Postby LinzWorld » Fri Mar 13, 2009 5:26 pm

It's pretty important to manage EDS or HMS, especially with Fibro, too as far as you are able because of the damage they can cause (fequent subluxs = not good for your body!).

Physio can be really helpful in stabilising joints, but you also need to address the sleep disruption and ANS involvement - you don't want to end up with out of control POTS and Fibro on top of it all.
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Postby Lucy-Lemon » Fri Mar 13, 2009 5:59 pm

i am meant to be having physiotherapy, but the lady that is meant to do it (she comes from the local child developement centre) just doesnt seem to want to come, and when she does she seems to make me feel like its all my fault (her choice of words last time was "well maybe its the way you're thinking"). at the hospital next week we're going to bring it up, as its just not on. they had to chase her up last time i went (november) and she's only come once, we've not heard from her since.
i personally want a new physiotherapist but whether that will happen or not i don't know. i just know that i need help.

thankfully my sleep is ok at the moment, i'm in a routine which keeps my sleep regular, although alot of the time it takes a while for me to fall asleep. but i am sleeping, thats the main thing.

we've got a list of everything we need to say to my consultant, but we can only wait and see whether anything happens. i mentioned the joint popping last time i went, when it was no where near as bad, and i was repeatedly told it was because i was moving more :? fingers crossed something might come of the appointment.

thanks Linz
Lucy x
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