Hypermobility Syndrome Diagnosis & My Experience

After 5 years of relentless hospital visits, physiotherapy, orthopaedic surgeon, pain clinic, painful lumbar epidural's. I started to give up, after all of these years of people telling me that nothing is wrong, believe me you start to wish that some one would find something so they can fix you. Physiotherapy courses that tell you, pain doesn't mean something is wrong, your fine, when the exercises make the pain worse.

Then I started to see an acupuncture therapist, who is the most fantastic person in the world, they look and your whole body, she knew something was off about me body but wasn't sure, so she sent me to a friend of hers, a chiropractor. He also looked at my whole body, and picked up that my ankles were collapsing in wards and to tell the pain clinic when I next see them because it was making my pelvis point forward and putting pressure on my spine. So I did...

"Have you ever heard of Hypermobility syndrome?" she asked, "No?" "It's a condition of where your body is making faulty collagen, causing lax joints and over flexibility". It all made sense. I've always had "weird joints" every one said. Even when I was getting my ears pierced they guy said they're really thin. My elbows used to dislocate so much as a kid, social services came round to see if I wasn't being thrown around the room.

I went to see a rheumatologist, and he only had too look at my hands to diagnose me in under a minute.

So that was it, I have hypermobility syndrome, an invisible and extremely painful chronic disorder at 23 years old.

Since being diagnosed I've been to a podiatrist, hand occupational therapist, hydro therapy, physiotherapy, normal occupational therapy,TENS clinic, rheumatologist, that's only so far as well, there's other problems that come with this disorder with internal organs, POTS and IBS are other problems too..(weird thing is I got diagnosed with IBS way before my joints started to fail) The main thing is that I'm getting help that I need, and people are actually listening to my symptoms. I have to admit that I did develop depression and a sleep disorder, but fortunately a quick visit to the doctors sorted that out, also the medication that they put me on helps with sleep, depression and pain tolerance.

I think I'm starting to get better all of the small changes do make a difference and the huge on-line community support group has been really helpful and comforting to use.

If you think you my have hypermobility syndrome visit this website and go and talk to your doctor, don't suffer in silence.

Hypermobility.org

Pots, is a very strange one indeed, no one really know what causes it but one thing we do know is 70% of people with HMS/EDS have POTS or an autonomic related disorder, there's loads of symptoms as well but the main one is you're heart rate leaping higher than it was, the doctors normally go by 30 beats, so when you stand up if your heat rate goes up, then you should get checked out.

It also mimics the symptoms of chronic fatigue syndrome and vitamin B12 deficiency and other conditions, there's only one blood test that can be performed, but that could have a false negative because only some people produce the chemical when they have POTS. But the doctors should perform other blood tests before they can safely diagnose POTS.

70-80% of people with POTS are female teenagers and adults.

There's not really much they can do about POTS app]art from changing your diet, a higher salt intake might be required, drinking more water, eating small meals, drinking less alcohol (I know every one says this for everything, but when I drink I get really bad symptoms of POTS and it's kind of ruined the fun of it) and eating less carbs.

If the doctors think that you have POTS, they give you s tilt table test.

Cute Sad Baby Panda by LazyHaze

decrease in blood pressure
light headedness, dizziness, head rushes
exercise intolerance, being completely waked out after walking
extreme fatigue
fainting
really bad thirst
cold extremities, feet, hands and nose
chest pain and discomfort, tight chest
disorientation, feeling a bit detached from reality.
tinnitus, ringing in your ears
shortness of breath
headache
muscle weakness
shaking
visual disturbances
abdominal pain or discomfort
bloating
constipation
diarrhea
nausea
vomiting
brain fog, can't think straight
burnout (too exhausted to do anything)
decreased mental stamina
depression
difficulty finding the right word
impaired concentration
sleep disorders
chills
feelings of fear
flushing
overheating
nervousness
over-stimulation

Lots of symptoms to choose from I have about 90% on that list, it's very tiring and worrying but it's not a fatal condition even though sometimes you think you're having a heart attack, just got to remember what it is.

My wonderful and understanding Boyfriend.

My family and friends.

My Acupuncture Therapist that found Battle Field Acupuncture.

My Rhumytologist who is trying everything to help me.

Versatis patches topical anaesthetic.

Amitriptyline (Helps with pain tolerance, sleep disorder and depression)

Occupational Therapists (they show you a different way to do things and give you equipment to make your life easier, I've a toilet frame and a bath board so I can get in and out of the shower with ease)

Hydro Therapy (Really recommend this to every one)

Physio Therapy (The right kind, now they know what is wrong the exorcises are helping)

Podiatrists, my ankles were wonky and curving inwards, which was then pushing my pelvis in and pinching my spine, I've been given inserts to correct them.

Hot Showers & Baths.

Pain Killers (co-codamol & ibuprofen)

Hot water bottles.

Heat Patches.

Vibrating Pillow.

Splints & Crutches

Sport Tape (for my finger tip joints when I'm making/drawing things) you can use plasters as well.

A shopping trolling (thankfully it's become more acceptable for someone my age to have one).

Pacing my day, you can only do so much during the day without breaking, so learn to have breaks and put things off until you feel you can do them.

I make sure I have enough sleep.

I always have projects on the go, like my Zazzle store, or making things to sell on Ebay.

Making sure I have things to look forward to, like holidays or buying myself something every time I have an appointment.

1 year on and I'm still only slightly better. This may sound a bit disconcerting for people just starting treatment, I've seen about 30 people now. And if you think about it Doctors and Specialists only like to treat one problem at a time, this is a bit frustrating for some one like me because, you have to have a separate appointment for 1 problem and for a whole body that doesn't work properly it becomes a lot of appointments.

Still I still have the rest of my life to sort every thing out.

Last year I only have the physcial side of things being addressed. With a visit to the rheumatologist coming up next week I was wondering where I need to take my treatment. Do I need my IBS addressed? Is the dizziness dangerous? How much do my palpitations worry me? So, I've made a list, because it helps me to remember and when I look at it I can prioritise my symptoms, I also can give a copy to her so when she has a few moments, she can look at it too.

Margrines
Sensitive to light
Ringing in Ears
Clicking Jaw Dull ache
Nech Ache Burning
Hard to Swallow
Collar Bone Pain Sharp & Burning
Shoulder Pain Sharp & Burning
Elbows Sharp
Wrists Sharp & Ache
Fingers Ache & Stiff
Light Headed/ Dizzy
Blurred Vision
Palpatations Ache (CHEST)
Heart Races
Heart burn or Indigestion
Pain Middle of Back between shoulder blades
Ibs Sharp
Right Lower Ribs Slips Ache
lower back pain
lumber/pelvis
hip joints Sharp & Burning
legs burning
Knees Sharp
ankles ache/sharp
feet ache & sharp

Other Symptoms
Exhausted
Bad co-ordernation
Cold ache
Sleep Disorder
Depression
Thirst
talking
hot flushes
dry & sensitive skin
Mouth unclers
Sensitive to Weather Cold and damp weather makes joints worse
Muscle Twitches & spasms (http://www.youtube.com/watch?v=HsYQMxsMoDU&feature=related
looks like this video, no pain, feels like bubbling
Mainly right rib cage,left rib cage, calf, hands, feet(arch), wrist, eyes,
Hot Flushes don't know why or what causes it
Anxiety when falling asleep
Blood Pools in legs and arms When I've been standing or when I'm cold, takes ages to warm up

That's the list... Daunting isn't it

So I've got this all on a spreadsheet, number 1-10 on how it affects my daily life. I've also used a colour co-ordinated system red being bad, orange being just about manageable and green means I'm worried about it, or it effects daily life mildly. I've also put a short description about when I've noticed it or what it stops me from doing.

Though this list is wildly long, I think that most of them can be grouped into 3 disorders that are common in HMS sufferers, POTS, autonomic dysfunction, or fibromyalgia. So I guess that's kind of good news because I can see one person.

Also I'm worried about how to bring this up with the rheumatologist with out sounding like a maniac, because we haven't really talked about my other symptoms and I am worried about the palpitations, even though I've had them since I was 14 and I've been fine, it's just a bit scary with your heart stops and then flutters, feels like a lifetime when this happens! I don't feel like I can go to my doctor about them because he rolls his eyes at me, baring in mind I avoid seeing him, I managed not to see him all year apart from one appointment, and he still managed to upset me, I'm still angry about it now!

Anyway I have a week to get pull myself together (ha ha) and ask her to help.