Click here: to donate by Credit Card
Or here: to donate by PayPal
Or by mail to: Free Republic, LLC - PO Box 9771 - Fresno, CA 93794
Thank you very much and God bless you.
Posted on 02/07/2026 10:33:42 AM PST by AuntB
HYPER MOBILE JOINT SYNDROME IS REAL AND IT HURTS
I ASKED: I inherited hyper mobile joint syndrome. Please talk about how difficult this is at age 78 as all your ligaments stop working. no one will even admit it's real.
AI: It is an incredibly valid and, unfortunately, common to feel dismissed regarding Hypermobile Joint Syndrome (or hypermobile Ehlers-Danlos Syndrome/HSD) at age 78. While many doctors mistakenly believe this condition "gets better with age" (often confusing decreased flexibility with decreased pain), the reality is that the aging process often causes a 78-year-old's hypermobile body to feel like it is "falling apart".
Here is an overview of why this is so difficult, why your experience is real, and the challenges of aging with this condition:
Why It Is So Difficult at 78 While you may have lost the "bendy" flexibility you had in your youth, the core issue—weak, loose, or dysfunctional collagen in your ligaments—remains. By age 78, this causes severe, compounding problems: The "Ligaments Not Working" Feeling: Because your ligaments are loose, they cannot hold your joints in place. Your body has been forced to rely on muscles to do the work of ligaments for decades, leading to chronic muscle fatigue, tension, and spasm.
Worsening Pain and Instability: As connective tissue changes with age, joint instability can increase. The result is often increased, not decreased, musculoskeletal pain, along with frequent disl ocations or subluxations (partially out of socket). Premature Wear and Tear: Decades of joints moving too far have likely led to early-onset, aggressive osteoarthritis. The cartilage in your joints has endured more stress than average.
Loss of Proprioception (Balance): You may feel more clumsy or have poor balance because your nervous system has difficulty knowing where your joints are in space.
Systemic Fatigue: Dealing with chronic pain and the constant effort of just holding your body upright creates profound, unrelenting fatigue.
The Frustration of Denial You are not imagining this. Joint hypermobility is a recognized, genetic, multi-systemic disorder (often inherited). It is often overlooked because:
Lack of Awareness: Many healthcare providers do not recognize that it affects adults, especially the elderly. "Benign" Misconception: Historically, it was called "benign joint hypermobility syndrome," which made doctors downplay the immense, often disabling, pain it causes. Diagnosis Challenges: In the absence of genetic testing for the most common type (hEDS), many providers don't know how to diagnose it. Realities of Managing at 78 Protecting Your Joints: Bracing or splinting specific joints (like knees or wrists) can provide the stability your ligaments no longer offer. Targeted Physical Therapy: Instead of generic exercise, finding a physiotherapist familiar with hypermobility can help strengthen the muscles around the joints (proprioceptive training) without causing more damage. Managing Co-occurring Conditions: Hypermobility is often accompanied by gastrointestinal issues (constipation, reflux), dizziness upon standing (dysautonomia), and poor sleep, which all worsen with age.
Finding Care: It is essential to look for rheumatologists, pain management specialists, or physiotherapists who specialize in Hypermobility Spectrum Disorders (HSD) or Ehlers-Danlos Syndrome (EDS).
Disclaimer: I am an AI, not a doctor. This information is based on medical research regarding hypermobility and aging and should not be taken as medical advice. It is recommended to seek specialists who acknowledge the reality of this condition.
|
|
Click here: to donate by Credit Card Or here: to donate by PayPal Or by mail to: Free Republic, LLC - PO Box 9771 - Fresno, CA 93794 Thank you very much and God bless you. |
I would like to talk with others familiar with hypermobility. It's very frustrating because I can no longer drive to get medical care and they refuse to give me pain medication. I have been using collagen for 2 months. I notice my fingernails growing like crazy and don't bruise as easily. I'm told there is nothing helpful by doctors. I am leary of AI but it's helpful for medical questions.
I just ran across this article. Thanks for posting it.
https://freerepublic.com/focus/f-chat/4260703/posts
Snip
In particular, CPs and elastin peptides (EPs) supplements can repair wrinkles, accelerate collagen synthesis, and play an anti-aging effect. However, despite oligopeptide collagen, CP, and EP exhibiting skin soothing and anti-aging effects confirmed in other fields, their combination effects in anti-aging have rarely been investigated.
B,
I’ve got a different issue. My joints are locking up,
I believe due to calcium build up. Rear view mirrors have become important.
A friend in Klamath River says the river is still dead...
Is this what they call being double jointed?
Yes Sweetheart, our river is dead. Our property is worthless.
I’m so tired of losing homes.
“Is this what they call being double jointed?”
That’s what I was always told. It was okay until they go too loose!
I was famous in high school gym class for my contortions.
I have the same thing, and it has gotten to be an issue as the years pass. I have to be careful not to put my feet up on a desk, because my knee will hyper extend and start to hurt after a while. The same thing with my elbows and sleeping, I now have to be careful not to throw my arms off to the side or hand off the bed palm up because my elbows will hyperextend and hurt badly.
Thank you so much for telling your story. I’ve never been able to talk about this to anyone..everyone including doctors just look at me like I am making it up..even when they see the deformities.
That’s rough for me... I knew it would hurt more but I didn’t know it would be so ugly!
I miss my beautiful hands and have a horrible hump on my back part of the time.
Im trying some Bracing.
Printed
yours honestly sounds so much worse than mine.
There is nothing anyone could notice externally visible for me.
I had three main issues, the two I mentioned earlier and a knee issue where I would step sideways and sometimes it felt as if my knee just wasn’t there and I would gasp in pain and could barely walk afterwards.
But I found that a combo of stopping to put my legs up on a desk and letting my knee hyper extend helped like I mentioned earlier, but I also and more importantly got a personal trainer and for 2 years twice a week we did nothing else but worked on strengthening all the muscles around my knees... AND it worked! after 20+ years of having to watch what I did, my knee works perfectly fine and will only hurt if I forget and put my legs up.
Could a vitamin deficiency cause ‘double-jointedness’ and hypermobile Ehlers-Danlos syndrome? (Yes, active or methylated folate needed)
https://freerepublic.com/focus/f-chat/4144788/posts
Yes, I need physical therapy but it’s 50 miles away and I can’t drive any longer. Mine is so much worse because of so many injuries
.crushed pelvis etc.
Thank you so much! Do you have a health ping list?
From your article, thank you!
The good news is a treatment already exists. Methylated folate—folate that is already processed—is FDA-approved and widely available.
I will find this. Until recently I didn’t know that folic acid is man made and bad for you. Folate is the correct vitamin.
It appears it is related to Type 1, 3, and 5 collagen and elastin, as well, with an emphasis on Type 3. Type 2 collagen, the actual type primarily in cartilage, is not affected, and is normal.
It seems, however, that supplementing collagen isn’t generally considered useful, and elastin, which can also be supplemented, isn’t thought to do much.
I will say we make less collagen as we age, so I do believe some supplementation could be helpful, and, until recently, I had not believed elastin could be supplemented, but it can, and I am doing that, for the past couple months.
I would focus on getting Metafolin, which is your best bet of the types of active folate. I have used that, for years.
Barge to ask where to source Metafolin? I did not know until today that methylated folate is recommended over folic acid intake.
We used to buy Metafolin from Solgar in the 1,000 mcg tablet form, then just break it in half and take that half, once a day.
You don't need a lot of folate, and getting too much isn't helpful.
I did my doctoral dissertation in collagen chemistry, including helping with a study on Ehlers-Danlos in horses. Quarter horses are especially susceptible.
It is usually the result of defects in processing of collagen to make dermis, ligaments and tendons. To my knowledge there is no “cure” only palliative care. It’s genetic.
The horse in question kept tearing her skin in the pasture. So the only alternative was for her to spend her life in her stall or be euthanized.
I remember when the vet put her down he was crying. She was the sweetest girl.
Vitamin C is a co-factor for lysyl oxidase which makes collagen crosslinks. It might help but collagen has to be in register or lysine residues will not be close enough together to react.
Thanks for the information. My skin is awful..tears like tissue paper. It’s improved since I started the collagen. I was diagnosed 55 years ago with Morphea, a localized form of scleroderma.. where you produce too much collagen. That was fun for awhile. Lol. At 70 I looked like I was 35. After the last round of covid, it just all disappeared. I aged 40! years that week.
I believe the Morphea, loose joints and the chronic pancreatitis are all part of the same syndrome... I’m down to 81 pounds and just can’t gain.
Disclaimer: Opinions posted on Free Republic are those of the individual posters and do not necessarily represent the opinion of Free Republic or its management. All materials posted herein are protected by copyright law and the exemption for fair use of copyrighted works.