Hypermobile Syndrome Support Group
Hypermobile syndrome is characterized by the ability to move a joint beyond normal range. People with hypermobility syndrome may develop other conditions caused by their lax connective tissues. These conditions include Gastroesophageal Reflux Disease (GERD), Irritable Bowel Syndrome (IBS), varicose veins, flat feet, scoliosis, sprains, tendonitis, and bursitis.
I'm just back from my Rheumy today, been told I have OA (which I knew) and hypermobility (which I knew) and that is why I have had all these pains in every joint and a fast progressing OA. Apparently my positive RF (31) was irrelevant, its not a very useful test apparently. Wish I'd asked why they bother with a test if they then ignore the result!
I'd be interested to hear what you have been told, clearly like me you suspected RA and were told it was just hypermobility.
For your feet, use hard plastic insoles which raise the arch of the foot, it gave me decent enough improvement when my work involved being on my feet a lot. Our flat feet cause the knees to bend towards each other having a knock on effect on all the other joints and the feet themselves.
I was so pleased to be told it wasn't RA that I didn't ask many questions, they all occurred to me on my way home. I hope he is right and not just distracted by my hypermobility, there is some family history of RA (my great grandmother).
Reading your post again I see that "aches and pains" are how your rheumy describe the symptoms common with hypermobile joints. That doesn't sound like she is listening to how much pain you are describing.
In my case I have always been more double jointed than anyone I have ever met, but my family is littered with hypermobile males who have few other symptoms so I made no connection, I am the only female in the family with hypermobility.
Diagnosed with the syndrome I am now waiting tests for the other types of EDS. From what I read the British Medical Association classes hypermobility syndrome and EDS type III as "indistinguishable".
The diagnostic criteria include hypermobility, chronic joint pain, repeated dislocations, repeated soft tissue damage (tendons etc), stretchy or thin skin, prolapse, varicose veins and myopia.
Other symptoms are too many to mention. If you think you have three or four of the diagnostic criteria then get another appointment and point them out.
I am on arthritis painkillers, thumb braces, occasional knee supports and orthotic insoles, sounds awful, its not, they make such a positive difference that I can lead a normal life. Most of the above I had before diagnosis, only the painkillers are new.
I urge you to get some good orthotics, my physio told me that when the feet are out, the whole body suffers. Foot pain, ankle pain, knee pain and it keeps going all the way up to neck pain as your muscles work to keep you in a functional position while your weight and gravity put strain on every misalignment.
My present pain has come on over a few months, it has happened before, I am exhausted and practically disabled for a few months then get better for a year or two. It happens quickly and seems to be whenever a change my lifestyle occurs.
Starting a more active or less active job would bring it on for me in just the way you describe.
orthotics and light bracing do help, if you get the right kinds.
I'm glad you wandered in here. :)
oh, there can also be inflammations when mast cells get activated.