retyped text wrote:Hi can anyone relate to this I had HMS from a very young age but was just diagnosed at the age of 24.
My HMS started in my feet and back and I also have a bone curvature but the HMS has gone to my hands and is extremely painful I wear supports but they do not seem to help a great deal and have seen a o.therapist.
I take co-codomol but they do not touch the pain.
My hands have become stiff and hard to move, they have collapsed in the centre of my hand and my bone structure has just spread out and collapses which also happened to my feet years ago. One minute my hands are bearable and the next my leaders get stuck and my fingers get stuck up in the air and are hard to move has anyone else had this with hands or any collapsing of the bone structure !!! It seems like HMS attacks one part of the body breaks down the bone structure and then leaves and attacks another part of my body any views on this please help
I am 27 yrs old and feel ninety at the min ha ha
Hi weggy, if you do a search via the facility above and type in hands there are a fair few posts with varying titles which mention the many difficulties those with hms are having or have had with their hands. it could be helpful to you to read through a few of these to see if anyone has mentioned anything which you may find useful.
I am not sure if in your description of your current problems with your hands you have been told by a medical professional that the bone structure is collapsing. The ligaments/muscles supporting my fingers, thumbs and hand have become so lax that they are not supporting my hand very well at all. My fingers curl alsoas though they are on a permanent visit to the centre of my hands!
Your description of your fingers going 'upwards' sounds as though they are sublucating/dislocating but have you asked the occupation therapist why she thinks they are doing this or could it be that they are spasming in a response to the pain you are in.
At a recent appointment at UCHL in London the physio there felt that possibly wearing latex gloves would help - a technique i believe started in the hypermobility clinic in leeds. It sounds bizarre but i believe the theory goes that the tightness of the glove acts as support and I suggested also that it possibly helps to wake up the muscles again to improve function - somthing learned from another physio who spent months 'waking up the muscles' in my shoulder. In short and forgive any innacuricies I am not a doctor - that muscles that have been in pain for a long time actually switch off, in essence a technique that the brain has learnt as a response to pain! Apparently the wearing of the gloves enables the user more functionality and less pain. I had difficulties finding gloves small enough but thats another story. I have posted about this somewhere on the boards before and perhaps a nice mod could find the thread!
The physio at UCHL also said that because us hmsers like to wriggle and move to help with the pain that supports etc can often not be very helpful as the hypermobile tend to move within the splints themselves. The OT was keen that I used the splints to prevent injury though so it is a difficult area.
Have you been offered nerve conduction studies at all I wonder? It may be worth your while to do this.
As I type I have the strong feeling this info is definately already in another thread, so wil leave you to browse the site on that.
With regard to the pain in your hands - did your occupational therapist suggest alternate warm to cold soaks and back again at all. This has a proper name but I can't remember it am afraid.
to keep the hands with some function would exercise with elastic bands used to provide resitance help do you think. I was shown these by a physio - it did only work with some fingers as even the loosest of bands popped my thumbs. It has also been suggested that clay is helpful as a therapy.
Pain wise - I find trying to keep my fingers moving during the day and if the pain is really bad, wearing a splint at night -a resting splint helps with the spamsing that my hands appear to do all by themselves whilst I sleep. Massaging with anything helps also.
On occasion I also use ibuprofen gel which offers some temporary relief.
I wonder if a pain mangement course would help you weggy? Details of these can also be found on the site.
In the meantime - as I say try the search facility using hands as a starting point and hope that somewhere there is more help than I have been able to give tonight!
Take care nonya