I was diagnosed last October and did not recognise stiffness as a problem but it is a symptom which has developed.
My hands are getting steadily worse needing stretching and bending carefully - I even wonder about the hyper-mobility as the joints appear looser on my little fingers which have always been double jointed, but now they want to go further and hurt.
Also other joints seem to want to join them. The last joint in each finger have always been able to bend one way only, but they are feeling bruised in the morning as if I have tried to bend them sideways! If I squeeze on the outside of each joint there is pain as if bruised.
I am having problems placing them when I settle to sleep on my back as my elbows need careful placing too. I am finding there is pain around the funny bone area.
I also get pins and kneedles in my little finger, ring finger if I lay wrong on my back and the only way to stop it is to move slightly towards that side and if that doesn't work to make that more extreme as in laying on that side which stops it immediately.
I have had an MRI scan of my neck and shoulder area. There is no sign of anything anyone can resolve other than slight osteoarthritis. Carpal tunnel has been excluded and the nerves in my elbow are not trapped!
My hands experience pain if I hold a glass with ice in it or a warm cup of tea, and I mean warm not hot.
So it all sounds like nerves and untreatable. But now, at night my hands really hurt. Every finger joint yells at me and thats having taken Lyrica, Amytriptyline and Tegretol - plus two co-dydramol when this happens. I even wear arthritis gloves. I have told you what my mornings are like.
If anyone else has experienced anything like this, how do you deal?
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Sarah-Jane
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These all sound like symtons people with FMS experience, not all people get all symptons, sadly its one of those conditions that you have to learn to live with, getting upset about it doesn't help. I been diagnosed with FMS since 2003 but told I was probably born with it and I am nearly 61. I take each day as it comes, I go to bed when I want and get up when I feel able to. If I don't want to go somewhere I don't go and I have a very uinderstanding partner. I did manage to workl part time until two years ago but now I am on long term sick.
Take care and good luck
yeah iknow what you mean last night at meal i had glass of water with shards of ice in it my fingers and hands were turning the colours of the rainbow it was so funny they went through lovely shades of bluey/purole lol love to you diddle x
Thank you for this. I am not worrying about it, I just wondered if there is anything I can do as I cannot use any anti-inflamatory creams although I am tempted.
I used to use a touch of ibuprophen pre all these meds but I don't know if I can use it with them!? Lyrica, Amitriptyline, Tegretol, Co-dydramol.
I have tried wheat bags but heat or cooling just causes alternative problems.
I have hypermobility too, and its my knees that are the most painful, but like you i always have to stretch everything, fingers, toes, elbows are the worst for locking all the time especially in bed. My shoulders painfully click all the time and my ankles, i have to stretch and crack them myself. I dont know if i am damaging them any more but it feels better.
I too have pins and needles all the time, and i did have the carpol tunnel op and that didnt make any difference.
My hands cramp up so easy, i cant scrub anything as my fingers, hurt to open my hand.
I am on cocdamol and gabapentina and amitriplyn and none of those help, sorry i dont have any answers hopefully you might feel better knowing you werent the only one.
hiya, i to have exactly the same symptoms as yourself, i was diagnosed in september but have probably had it for 15 years. I have steroid injections which are amazing, having them was like going to hell and back, they are just starting to ware off. I too was on amatriptoline, it didnt do anyting for me but made me giddy, i am now on lofepramine 140mg before bed, this has helped realy well, i now have a deceint nights sleep and dont wake-up so stiff. Unfortunatly this is a condition you have to learn to live with, don't let it be the boss. Good-luck x
Hi Sarah-Jane, that sounds really horrible, it's bad enough when I get similar symptoms when my sero-neg arthritis flares, I can't imagine what it's like having that all the time. I have always found hydrocortisone injections the best relief.
I am wondering if you have tried any aromatherapy or reflexology solutions that might help.
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It may be worth a look if you have exhausted all the typically suggested remedies.
Thanks Kate, I have been hearing a lot about this and its nice to get a recommendation although I understand you are not recommending. Its a start and an area to check out. Soft hugs
I am going through the same thing. I went to Neurologist on Thurs 12th this month and just diagnosed with Hypermobility syndrome which possibly explains all the problems He did lots of physical tests and he straight away pointed out about me being 'double jointed' I was like yes i have always been an extremely physically active person doing the splits flipping over back, can put my thumb on my arm, can twist my arm/elbow around , put feet over head ..(not a chance now) never can sit for long (now all i do is sit on my bum) my bones are starting to protrude on knuckles and on back of hand slightly and inbetween my fingers too. They do not bother me so much it is being so uncomfortable everyday and stiff and weak and no strength, everythings an effort!
NEVER GIVE IN! well easier said than done heheh xx
LIke you the tenderness pain when touching fingers, my wrists back of hands and even tips of fingers. My left arm gets very weak and spasticity and have no strength to lift much at all now a days even doing my hair with the straightners is a chore!! taking washing out of machine and trying to fold it up and trying to make a bed is just taking the energies from me.
My left leg is weak and has a horrible constant feeling at moment where can not get comfortable and could not feel the tuning fork weird. when asked me to lay and lift up my left leg i never realised how very difficult it was felt like a real lead weight doing it and wobbly, then got up and leg was shaking.
. I have discs on my spinal cord pressing on nerves so got a few things going on i guess. day to day living is getting up, driving hubby to work, chauffering girls to and from my customers and organising as i have had to stop the physical side (hetty has become farrrr tooo heavy lol) sometimes getting up and down stairs is a nightmare i have no balance doing heel to toe (never knew that either lol) but yet today was ok
. I am self-employed and am losing so much money due to having helpers now its devastating!!!! but i keep going hoping will get better just have to see what like each day and take it as it comes.
. I am hoping i can get a 'Blue badge as walking distances are a no no completely. I have never claimed anything but feel i atleast should be entitled to this to be able to give me a little more time in a shop (hate it) 5 mins and i want to go home now. ??
Like you say Don't let it get the better of you or we will seize up!! I take a variety of medications but when i have bad bad days none of them help. I carry on with the work 1. because cannot afford to stop . 2. to show i will not give in. 3. for the family too as i do not want them to think i have given up hope. 4. Because i keep thinking positively and think that something out there will help cure it lol .
Wow I am really with you on some of those, I too have great difficulty picking up wet clothes - I now have a gripper from mobility shop and its a big help.
I have never been as mobile as you but used to admire others that were. So seems I have got off lightly really.
Feel for you being self employed as I was some years ago and when I pulled a tendon I had no choice but after one week in bed to go back to work! I was a childminder and looked after the little ones on my knees! I had a friend pick up my kids from school and one minded child was sub-let! I am so lucky to be in a paid job, but am fighting to keep it!
Sounds to me like you should apply for DLA and a Blue badge as I too cannot walk very far and that was the basis for being accepted. Make sure you get guidance on filling in the paperwork here first!
It is a shame you had to give up being self-employed and i am so glad i have had my kids and over and done with and grown up pretty much now. youngest is 11 and very independant and as tall as me heheh.
I see a lot of children in my job and have watched them grow up and they see me as 'Anty fairy' so sweet!!! but i cannot hold even a baby long i feel i am struggling big time and try grit my teeth lol. It sthe back and ribs and base of back, neck and arms and hands they just feel like getting heavier and heavier and heavier and i feel am going to drop or plop..
You keep going the best you can!! but think honesty sometimes best policy because if you sometimes show visible signs like i do that is when you cannot avoid it.
I will try with the Badge.
Thankyou!! i just think they will look at the outside of me and think yeahhh your pulling my leg lol.. cos its inside the suffering is going on and it can be debilitating some times..so long as can walk and use my arms still i will plod on and on and on xx
ps sarah j ...i use lyrcia but it is one of them things you have give it chance it takes quite a while.. see i was given for the nerve pain and it takes the 'edge' away. it could help you ..i was taking tramadol then codeine 60mg..but none mixed with lyrcia so i now have co-dydromol. i take lansoperale too for the gastric problems. beta blockers for the pulse heart rhythm. I use creams too ..cant say anything really helps but if it even takes an edge its worth it. But check 1st with Doctor to sort meds out as this is only going on what other people take and what works for each individual. I was on morphine for the nerves at one time and that did not help.. so for me Lyrcia as i have done ..Amitryptiline, Neurontin (made me ill) ..the doctors are pretty good its all about trying things you ahve to be a guinea pig really. I have bad sinus head trouble pain in eyes too so have momentason and zopiclone for the bad sleeps. They know how important it is i have to keep my little business going so really determined.
We do have to live with it and i feel before long i wont be using a Manual car within the next year cant cope with my left foot on clutch much now. xx Goodluck and i talk tooooo much with typing (but not in reality hahahaah) i am slack these days and quiet
Well, what a response! You are all brilliant and a great support too. Just think what we deal with and don't moan about! Its a great release to tell all here isn't it?
Thank you for all your helpful ideas, advice and support. I too take Lyrica and maybe I need to up the level, as its been the Amitrityline I have been increasing not the Lyrica. Well looks like another doctors visit! Work won't be pleased. Just had two weeks off [work in a school].
Just a thought, if anyone is getting jaw or face pain, did you know we tend to grind our teeth during stress and it can result in pain in these areas which are often mistaken for other things? Just something to check out maybe, ask your dentist as they can see any wear from grinding and you can get a tooth guard which may help. I didn't know this and didn't know who to ask! Doc or dentist!!!
and yes to the jaw and face pain it is more to touch rather than a pain. my jaw is slowly really going out of place so god knows what it will be like in another 20 yrs or 10 .. it used to be even!! it is so bad now and i am very conscious of it and it hurts eating and clicks. But don't you feel like your a nuisance when back and forth to the doctors for all these ailments going on i do!!! i always am apologising!! or crying! cos i dont do it at home xx
Hang on! There is something I read about the jaw. Its very interesting. Aparently your dentist should be able to help realign your bite to help and there is a disc inside the jaw that can slip and cause clicking etc. I will try and find it and get back to you fairycazzie.
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No medication seems to be working to ease some of the pain 
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