Joint hypermobility syndrome and soft tissue rheumatism?

[beckyb]

After 4 years of back pain(swelling/fluid on sacral joint) and multiple times in hospital i have been diagnosed with joint hypermobility syndrome and soft tissue rheumatism does anyone else have these problems?

Next step is new medication and physio. . . I also have APS, brochiectasis, neutropenia, B12 and folate deficiency which means im already on wafarin, longterm antibiotics, b12 injections and folic tabs, any information appreciated

[MaryF Administrator]

Hi there, I don't have the hypermobility, but I have met somebody years back who did and has since found that they have APS. I am glad to hear that your vitamin levels are all being checked so well, but do get them to also look at your vitamin D levels.. easily ordered and seen in the blood if a problem. Let us know if we can help any further and if you need to read anything specific on any parts of your conditions, I can have a look if you tell me what you would like to know. Mary F x

[beckyb in reply to MaryF]

Thankyou it does get very confusing woudnt it be great if there was a doctor who dealt with all conditions. It all started when i was i think 21/22 and had PEs since then it seems like every year im diagnosed with something new to add to the list.

[Helene]

Hello Becky

I have a similar list of conditions. I was diagnosed with hypermobility age 16, and Ehlers-Danlos Syndrome (EDS) age 42. I was troubled with the condition since very early childhood. I have had 7 prolapsed discs in my back and neck, have had 3 operations there (discectomies). In later years it is the arthirits secondary to EDS that has troubled me more than the back and neck, I have had 3 operations on my left hip and now have a hip replacement which I dislocated in August last year. It is deemed unsuccessful and I won’t have the planned hip replacement on my right hip.

I have APS and Protein-S deficiency, have had numerous DVTs and one PE, I suffer from post thrombotic syndrome and I wear compressions stockings class ll which helps a bit, but I do have a lot of pain in my calves. I have a lot of gastro related problems linked to EDS; long standing reflux problems have damaged my oesophagus and I have problems swallowing, I have severe reflux, I have SOD (papillary stenosis) after a cholecystectomy, and IBS for which I am using the Low FODMAP diet. I also have Vitamin B12 deficiency, Folate and Iron deficiency and Vitamin D deficiency, but all are treated with tablets/injections.

I have chronic migraine and have had since childhood, much helped the last 6 months by the fact that I now use Fragmin instead of Warfarin, and the amount of attacks per month has gone down from 12-15 to only 3-4, which for me is quite amazing!!

Finally, I have organ prolapse: 2nd degree cystocele, 1st degree rectocele and 1st degree cervical descent, probably again linked to my primary condition, Ehlers-Danlos Syndrome. I have various allergies and food intolerances and I have a hearing problem called auditory processing disorder. I am what’s called opioid resistant so I have no effect of pain medication like morphine etc and neither of local anaesthetic or epidural. It’s been a huge challenge going through the 12 operations I have had in total. Oh, and I have just been diagnosed with PoTS, Postural orthostatic tachycardia syndrome, another condition linked with EDS, I am waiting for an appointment for a full assessment at Queens Hospital here in London.

I am 48 years old, live in London, got medically retired at the age of 30 and I have been housebound the last 2-3 years. I only leave the house to go to hospital and doctor appointments and get hospital transport door to door. I got divorced 11 years ago, my grown up son left home 7 years ago and it’s now just my cat and me here at home. Life is tough but I get by somehow. My garden is very important to me and I have a blog and a website I maintain regularly.

How old are you, where do you live? Which hospital do you go to for your hypermobility syndrome? Have you heard about Professor Rodney Grahame at UCLH? He is my rheumatologist, I am so lucky to have been seeing him the last 7 years. If you want to get in touch please send me a message

Take care, Helene.

[beckyb in reply to Helene]

Thanyou for your reply, im 27 and live in cumbria i have only just been diagnosed with hypermobility at so i dont know much about it yet apart from the pain! It is the first time ive ever seen a rheumatologist. i also have had PEs, which is when i was first diagnosed with APS well about a year after the PEs.

[MaryF Administrator in reply to beckyb]

Thank heavens you have had some diagnosis! Mary F x

[jean48]

I have hypermobility also.

Jean

[thomas_tz]

Sorry to hear about your problems. One question on antibiotics: how safe is it to be on them long-term? You are basically removing all flora from stomach, gut etc, which could be one of the reasons for the deficiencies? What have the doctors said on long-term implications?

[beckyb in reply to thomas_tz]

See answer below (sorry didnt press reply button)

[beckyb]

The antibiotics im on i dont think are like standard antibiotics they dont fight infection they try to protect against it, its called azithromycin not sure that s the correct spelling. I have been on them for a few years it is due to my bronchiectasis COPD and low white blood count im on them to prevent (most of the time) chest infections etc.

I do not know of the longterm effects but i hope like with most of the medications i have to take that one day i wont need them anymore not alot of chance of that but i stay hopeful =)

[thomas_tz in reply to beckyb]

Thank you for the clarification. I hope you don't need the antibiotics soon. Good speaking to you, take care.

Thomas