Is it possible that I have a genetic disorder which has caused my tendonitis?

by Stephen R
(Livingston, Scotland, UK)

I am aware that this is an odd question, but it is one I have considered since my first diagnosis almost 4 years ago.

As a child I had problems with my hand writing which has been highlighted through my entire academic career. Most of my work was illegible and i have always been below average with sports. I have, since I can remember, always been able to bend my thumb backwards at an angle of 90 degrees without touching it. My tendons (in my hands) do not remain tight in my fingers, rather than seem fixed they slide on and off of my knuckles. I have arches in both feet but my right foot seems to flatten as weight is placed upon it. I received occupational therapy at 10 which resulted in a diagnosis of slow hand eye coordination. This has since been disproved. A GP then unofficially stated in an appointment that I had loose tendons.

After changing schools and GP most of the relevant information disappeared, the help my mother had fought for was halted. The symptoms remained but I had no diagnosis. I vaguely remember the term 'hyper mobility'.

It's been over 13 years since this information disappeared, I'm a 25 year old man. I have been diagnosed with chronic tendonitis in my entire right arm. This began with wrist tendonitis and golfer's elbow. I have been tested for carpal tunnel and have received only non steroid anti inflammatories and mild pain killers. During the summer I appear healthy with only a few small pains from time to time. In the winter I am uncomfortable all the time and unable to even carry my groceries. Cold objects send pain through my entire arm. At best I have no endurance, when I push through that I become useless for several days. I have gotten to the point now where The pain feels almost normal.

Since my initial diagnosis I have began to feel pain in
both arms, hands, wrists, elbows and rotator cuffs. I have experienced back and knee pain also. I am not in agony all the time, but that is due to avoiding heavy lifting. I used to work in a recycling plant where DIY and extremely heavy lifting were regular tasks. I was a passionate guitarist and am now a business student which involves allot of typing. I also play video games.

I am aware there is a lot that these symptoms could mean, but I deeply believe I have an underlying condition which has caused this. I cannot afford private help care and the doctors at my local practice here in the UK seem to be at a loss. I'm 25 but I feel 50. Thank you for listening and doing what you do. I hope you can help.


Joshua Answers:

Hi Stephen.

Sounds like something along the lines of Ehlers Danlos to me.

See: Ehlers Danlos and Tendonitis

It's a genetic condition causing extreme hyper mobility, when then leads to the rest of your symptoms.

Start with the link above, and we'll go from there.

Please reply using the comment link below. Do not submit a new submission to answer/reply, it's too hard for me to find where it's supposed to go.

And, comments have a 3,000 character limit so you may have to comment twice.

Joshua Tucker, B.A., C.M.T.
The Tendonitis Expert

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Jun 03, 2012
Thank You
by: Stephen Reilly

Thanks Joshua, you are the first professional who has given me diagnosis options other than carpal tunnel or tendinitis in the last 4-5 years.

I can definitely see some similarities in my condition and Ehlers Danlos Syndrome, and will begin taking steps to improve my condition immediately.

My main issue currently is having a local GP diagnose me as a Ehlers Danlos sufferer. In what way is this achieved? As I am a Scottish NHS patient MRI scans work on a priority basis.

Would you suggest that an official diagnosis would improve my well being in the long term?

Again thank you for your time. Sorry for the late reply.


Joshua Comments:

Hi Stephen.

I'm pretty confident that a diagnosis will not improve your well being even one small iota.

Western hospital medicine has nothing for you but pain killers and pharmaceuticals and surgery.

You need to learn a variety of self care and life style...methods? activies? Whatever the word is there....

The more you learn about your body and what beneficially/negatively affects it, the more power you'll have to help yourself.

Oct 19, 2017
hEDS with tendonitis
by: Debora

You are first expert I have seen with EDS knowledge.

I'm on permanent disability, as a result of years of struggling with pain, exhaustion and insomnia. I am 55, 140 lbs, muscular and am always told, "You look great!" I look 20 years younger, but inside I'm 20 years older.

I was a pharmacist but this is outside pharmacy. But, I am able to somewhat do lifestyle modifications.

My primary goal is to reduce/eliminate the soft tissue pain behind my slightly hyperflexive knees. (Flat feet, shin splints & bone splints history.

Podiatrist recommended a slight heel and great improvement.) BUT, I am in pain if I stand or walk for more than an hour a day, total.

Is there a stretch that can reduce or strengthen the tendons/ligaments?

I go to an RMT but we usually focus on degenerative back pain.

I am 55, 140 lbs, surprisingly muscular. I do light weights and to build core, as instructed by geneticist & cardiologist, I have taken up pole fitness. The knee pain has not improved. The behind-knee pain is delayed, after standing or walking.

I take supplements, as per geneticist and have noticed a slight improvement.

1. Co-enzyme Q10 - 400 mg/day.
2. Vit D3/K - 1,000 I/U day.
3. Alphalipoic acid
4. B5 500 mg/day
5. Vit C
6. Vit E - half dose
7. Carnitine - full dose
(Above are geneticist recommendations)

8. Mg absorbable - max dose
9. Vit D - 10,000 I/U day
10. Biotin - max
11. Zinc
12. Folic Acid - 1 gm/day
13. Vit B12 max

I am fit...but would really like to be able to stand or walk without pain behind knee. And shin splints?

I have OA, Osteopenia, IBS, Marines and normal EDS fatigue & aches.

Thank you if you have any suggestions to alleviate this debilitating pain.


Joshua Comments:

Hi Debora.

1. What's your Vitamin D level? How long have you been taking 11k i.u.'s of Vit D/day?

2. How much magnesium is the 'max dose' you're referring to?

3. No B6?

4. How's pole dancing? No problem? It's walking standing that is the problem (how's that work, with the pole fitness...doesn't that take a lot of on-foot activity/moving on one's feet?)?

6. What's the RMT doing for the degenerative back pain?

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