By Michelle on Monday, October 08, 2001 - 09:24 pm:

Okay, here's the deal...

I'm a twenty year old female, and sprained my right ankle seriously a few years ago. Since it didn't heal, my doc sent me to an orthpedic, and he determined my lateral ligament was too loose, and operated to fix it. Since then, I've sprained my right ankle, and as it didn't heal, back to the orthpedic. This time, he says it's Morton neurmoa, and I'm waiting on orthopedic insoles to be made. He did tests then to see if it was RA and gout, and the results were negative. As I was seeing him about the ankle this past summer, I developed a lot of pain in my right (dominant) wrist. Finally went to my GP this past week, and yes, it's sprained too. That's when she diagnosed me with hypermobility syndrome.

Being curious, I wanted to know what that was, since I supposedly had sprained my wrist doing daily activities. I've been reading on the internet, and the connection I've seen between my hypermobile symptoms and things I always thought were unrelated (and never discussed with my doctor) suddenly seemed important. With that said, should I be concerned that along with the constant pain in my wrist and feet, I also experience:
- lower back pain, mostly at night and morning
- difficulty sleeping, waking up often
- stiffness and pain in neck and shoulders
- pain in soles of my feet while standing
- little physical stamina (To get from my apartment to class, I rode a bike the ~6 block each day. Although I did it for 6 weeks, it never got either, I was always really tired afterwards, like my legs couldn't hold me up. Incidentally, I've always been physically active, playing intermural/city sports, even this past summer.)
- irritable bowel syndrome
- dizziness, faintess on standing
- mirgraines / tension headaches
- tingling/ numb feelings in my hands, feet
- dry mouth / constant thirst
- frequent urination
- hypoglocemia

One other thing worth noting - I'm not fatigued often. Have plenty of energy (at least most the time) and am involved in a numerous events. But I do sleep more than most people, easily sleeing 10 hours a night when I can. I just wake up, usually in pain, a lot.

Anyways, I'm curious what others on this board think about my symptoms. I don't know if it's really just HMS, or if I should be worried about something else, like FMS or whatever. I have appointments with both my gp and orthopedic in December, and am wanting to know if all this is relevant.

Thanks,
Michelle

By Sharon on Wednesday, October 10, 2001 - 05:20 pm:

Michelle,
I too have the sprains, joint pains, dry mouth, tingling in feet and hands, migraines and headaches, dizziness, irritable bowel, little physical stamina, pain in feet, stiffness, difficulty sleeping but when i can i sleep more than others, and back pain but i also have dislocations, subluxations,ringing in the ears,weakness in muscle groups, nerve injuries, nerve palsies, foot drop, costochronditis (Inflammation in rib cartliage), floaters in my eyes, heart murmur (trivial mitral valve regurgitation & increased flow across aorta), palpitations, Flexibility (in all but fingers (i have it in thumbs) and elbows so far, numerous surgeries to fix ligament injuries (2 ACl reco's, 3 knee scopes, 2 shoulder scopes, 1 shoulder reco),gross instability in numerous joints,easy scarring and bruising and probably more I can't think of.
Michelle I have been diagnosed by a geneticist and genetic councellor as having and EDS 3 like genetic hypermobility/collegan/connective tissue disorder.I also have Juvinnile Rheumatoid athritis, High inflammatory results in all blood tests, Reflex Sympathetic Dystrophy, HLA B27+, Asthma, Eczema, Raynauds Phenomenon, Weird optic nerves and numerous other probloems not thought to be related to my HMS/EDS liuke disorder.

Hope this helps Michelle, I have never been diagnosed with FMS or anything else like that.

By Silvia on Monday, October 15, 2001 - 04:49 am:

Hi Michelle,

I'm 30 yrs. old and have also been diagnosed with hypermobility. I never really had any pain problems until about a year ago. The following are my symptoms:

low back/right sacroiliac joint pain
right knee, ankle, and leg pain
pain on the soles of my feet, mostly the right one
shoulder pain, mostly the left one
neck pain
upper and mid back pain
frequent urination, mostly at night (though I also drink lots of water)
popping joints
With the sleeping, I also get into spurts sometimes when I have difficulty doing so, and I also wake up frequently.
Neurologic problems-Palatal myoclonus-this means that I get spasms in my palate and sometimes on the floor of my mouth. Had a brain MRI done and it came up normal. I believe I might have this due to loose neck ligaments.

In addition to these I haven't been feeling very well either. Don't really know what it is, I just don't feel good. Sometimes I feel fatigue and my head feels tired. But I think this is due to the palatal myoclonus. I have also had a couple of migraines recently, and I had never suffered from migraines before. I am in treatment right now with Prolotherapy. It has helped me with the pain and even some of the neurologic symptoms I had.

Hope this helps.

Silvia

By Rose on Tuesday, October 16, 2001 - 03:47 pm:

Hi Michelle - I was diagnosed last year and although I do not have HMS as badly as Silvia and Sharon I am fascinated to read that many of my symptoms match up. Mine all started when I had a legion in the right piriotol region of my brain. I then had numbness in the hands - a feeling that they weren't my own - then the clicking joint pain etc - but also I kept mentioning to the doctor it felt like I had constant water in my ear but i didn't - he laughed and dismissed it. Some days I also lose bladder control.

hope this is some help

By rachel on Saturday, November 24, 2001 - 08:43 am:

Hi i dont like to have to say this but you all sound like you have got F.M.S. as well i have fms and H.M.S. My daughter hase H.M.S. And is watieing to see a rhumy to see if she has fms as well as they are related conditions.

By Beth Fairfield (Beth) on Friday, November 30, 2001 - 08:38 pm:

I can say that I have the same symptoms as you guys.

Fatigue(most of the time).
Waking or not sleeping as heavely as I could(waking up still tired).
Pain in lower,middle and upper back(never at the same time though).
Numbness in hands and feet(carple/cubital tunnel surgery in left arm and need in the right, the left arm has the carple tunnel back).
pain in hands,wrists,shoulders, neck.
light headedness if I stand to quickly.
patella condromyaltia(sp)(patella moves around when I walk).
Tight achilles tendon.
Plantar Phatia(sp).
popping and clicking in MOST of my joints(more and more each year).
Spurts of being tired yet not being able to sleep.
Headaches that make me throw up.
I would say that both knees,ankles,feet and hips give me problems with the left one being worse.

I am sure I could list more if I gave it more thought. I don't have these symptoms all at once. Though I sometimes wonder if that is what it will take to get disability since I can't stand for long or sit for long and can't seem to find a job that doesn't require either of those or repititious movement.

By valerie on Saturday, March 30, 2002 - 02:03 pm:

I have alittle boy of just 7 years who is suffering from HYPER MOBILITY MOBIL JOINTS DYSPRAXIA,he has pain in both knees constantly tierd and falling asleep at every oppurtunity, pain inwrist hands fingers ankles elbows unable to walk more than 1ooyards so has a major buggie. He is on high does parectmol and naproxin does not work he has had physio hydro but now stopped. His jointsnalways clinking unable to go up and down stairs some days.Has anybody got a child like this.

By Julie Waters on Monday, April 01, 2002 - 05:29 am:

Hi I have a Daughter age 12 who was diagnosed with hypermobile joints 3 years ago, the doctor told me she would not suffer. I am now having to take her back because she is so much pain. Her hands are painful and the only way she can releive the pain is by clicking the fingers, her shoulders click all the time. She is having terrible pain in her ankles and knees, she was on paracetamol and ibrufen but that just doesn't do anything. She also has a heart mumur and nobody will tell me what is wrong with her or offer me any help.

By Valerie on Friday, April 05, 2002 - 12:51 pm:

Hi Julie,
Its so nice to hear of somebody else who has a child with these problems. We have been back to the gp and asked to go back to the peadtrician,now awaiting appointment,but not expecting any miracles.They thought my son had Arthritis had all symptoms and was about to say yes then the blood tests came back normal. Now they keep on saying cant really find anything specfic so lets say its hypermobility.Have you tried applying a wheat bag that you heat up in the microwave and place it on the joint in question it helps for a short while. Surley they can not keep ignorging these symptoms just because they are children and keep passing it off and hoping we will except it. How can we when you see your child suffering every day and stuggling to get on with every day life.I will keep you updated once seen pead.

By Keri on Wednesday, July 03, 2002 - 10:53 am:

I too have most of those symtpoms and have been diagnosed by a rheumatologist with having a subtype of EDS 3. I have recently developed costochondritis and was wondering if this is a common feature with people who have hypermobilty. Has anyone else had this development?

By SHaron on Wednesday, July 03, 2002 - 05:21 pm:

I am not sure Keri,
But I have had costochronditis 5 times since August Last year. (Or that is what I have been diagnosed with anyway).

By Jen on Friday, July 05, 2002 - 01:03 pm:

Hi. I was diagnosed with fibromyalgia and hypermobility two days ago. I have costochondritis, back pain (from my neck down to my SI joint), headaches, fatigue, wandering joint pains, 'catching' knuckle joints, popping and clicking joints and poor sleep.

I've been in pain for three years (I'm 34) and it took this long for a diagnosis.
The rheumy told me to lift weights and exercise. I'm trying to start but it is hard. Everything I do makes my ribs hurt - esp. the weights. Soon I'll try a yoga class. I've heard that stretching and heat are great for costo.

I am trying dietary changes too. I've stopped drinking coffee and am going to cut out (A little at a time) wheat, dairy, certain veggies and any preservatives or additives. Leaving me basically air to eat.

By keri on Wednesday, July 10, 2002 - 07:32 pm:

Thanks Sharon and Jen for your e-mails. I really appreciate the response. I will definately try the diet changes but I would be a little nervous about weight lifting and yoga as have read that these can be very bad for people who are already very agile and can cause more damage to the joints. I would love to hear how these are working for you Jen as maybe I will give them a try if you have any success!! Let me know how it goes and am looking forward to any more responses!!

Take Care All,
Keri

By keri on Wednesday, July 10, 2002 - 07:37 pm:

Also, does anyone find that their left side is more affected than their right or is this just a coincidence? Maybe I am just unbalanced (lol)!!!
I certainly feel that way. If I could just trade in my left side for a new model I would be all set!!

Keri

By Lin on Wednesday, July 10, 2002 - 10:40 pm:

YES KERI!!! but there are reasons why my left side may be more affected, I have injured my left side so often. or maybe its the other way around, I had so many injuries on my left side because of the EDS worse there? I think it realy comes down to your dominant side, usualy the right, so its stronger and more stable. But I fell and terribly sprained my left wrist before (thinking now i probably had broken it, this was a few years back) and thats probably why my left wrist subluxates multiple times daily, and I twisted my left knee badly falling off my horse, probably why its so much worse than my right, etc.
Lin

By Margareth on Friday, July 12, 2002 - 11:48 am:

If you are lefthanded your rightside is affected more, if you are righthanded your left side is affected more. That's what I generally see in the hypermobile people I know.

An explanation might be found in the following. I tend to dislocate way easier when I am not actively using a joint and the muscles surrounding it are relaxed than when I am actively doing something with the joint.
I can walk on the seashore relatively safely but as soon as I get to the sidewalk my hip pops out. As soon as I stop paying attention, I am lost... I can go through a (wheelchair) karate lesson without much trouble and totally sprain my wrist when closing the zipper of my coat in the dressingroom afterwards.
Roughly: I don't dislocate lifting a todler, I dislocate lifting a teacup. When lifting the todler I pay attention to what I am doing, when lifting the teacup I don't. It catches you when you are not aware, when you forget about a joint for a second.
Maybe when you are righthanded you are more focussed on your right side and therefore your left side tends to dislocate or subluxate more...
That's how I see it.

By Myke on Friday, July 12, 2002 - 02:55 pm:

Or if you're tired/fatigued/sleep deprived.

It's just bad. I hurt alot when I'm tired.

By Jen on Saturday, July 13, 2002 - 11:00 am:

In response to Keri wanting an update.

Here's how I'm starting.

I've joined my local YMCA which has a program for people who are exercising for the first time ever or have been away from it for a long time. It's a slow start program and I really like it though I haven't seen any results yet. - I just started.
The weights I am using at the Y are part of a machine. It keeps me from going past my range of motion. I am hoping that will protect my ligaments.
I start a yoga class on Monday. And I just got an exercise bike.
I've also been eating lots of salads and juicing.

I feel more indigestion but that's gotta be from change in diet. I also drink a ton of water now.

This is how I'm starting. We'll see how it all progresses.

How are you doing and what changes have you made?

Jen

By keri on Sunday, July 14, 2002 - 03:28 pm:

Hi Jen, I am doing o.k. but have not made many changes as am told by my physiotherapist that my muscles in my back and shoulders are too loose to do any exercises.
I asked about swimming but she told me only one lap of the pool with a flutter board. I tried using an exercise ball and doing centering exercises along with lifting small amounts of weights, soup cans to be exact by my physios recommendation, but I get too many pinched nerves in my back from this.
I am a vegetarian now so eat very healthy but will look into certain herbs to try. I will continue to find some sort of exercise to do too, I am thinking maybe Thai Chi as this is very to no impact and I have heard that most instructors are very attuned and accomodating to people with such disabilities.
Anyone have any other suggestions or any luck with Thai Chi?? I will keep you posted on anything new and look forward to hearing back from you and others!!
Take Care!!

By Sheena on Monday, July 15, 2002 - 04:11 am:

I had no success with Tai Chi, mainly because we had to stand absolutely still for long periods. This is not usually good for hypermobile people, who need to fidget. It was particularly uncomfortable for me as I wear orthotics in my shoes, and my normal shoes have a 1 1/4 inch heel. I could not find any suitable shoes for Tai Chi which were comfortable.

By Jen on Wednesday, July 17, 2002 - 06:22 am:

Hi.
I did a Tai Chi class as well. I did enjoy it and in my class we moved around alot. I found some of the repetitive arm movements to be intolerable. The teacher was great, though. He never made a fuss about when I just stopped and waited for an exercise that was comfortable.
I do think that the gentleness of the stretches (Never did we come close to that place where I would go past my joints healthy limits) was great and I do a modified version at home with my husband.
If you can find a good teacher I think it is actually worth it.
Jen

By Keri on Wednesday, July 17, 2002 - 10:53 am:

Thanks Jen, very good to hear!!
Take Care, Keri

By Denise on Saturday, August 03, 2002 - 09:40 am:

This is to Valarie or to anyone else that can help:

My 3 1/2 year old son was just diagnosed with hyper-mobile joints and arthritis. He also has rigid flat feet. We have been trying to find out what has been wrong with him for 2 years now. I have never heard of hyper-mobility syndrome and his doctor has never referred to it as "a syndrome". I am also a bit sceptical as to whether he really does have arthritis. Can HMS cause inflammation to your joints? He will be receiving his orthopedic insoles in a couple of weeks and am hoping it will help with his leg pain. I would appreciate any comments.

By Steph on Wednesday, November 12, 2003 - 08:42 am:

I've been diagnosed with Costochondritis, but I don't know much about it. I have a lot of tingling and pain in my back near the rib cage. Especially when standing or sitting too long. Does anyone else have this? I also have a swollen disc in the last vertabrae of my spine.