EDS hypermobility and cold weather

[Jonahdonah1]

My 21 year old son is in agony with such pain and swelling in his hands that he can't even grip a mug confidently. He had been managing his pain by eating healthier and going to the gym until this weekend when the temperature dropped and he is now in constant agony and exhausted...just been to doc who says apart from pain killers there is nothing they can do ...did refer to rheumatology ... He is not able to go into work...any suggestions? Feeling pretty hopeless right now...

[honeybug]

So sorry for his suffering.

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Best wishes for answers and relief.

xxx

[Anne2018]

Oh poor lad, my son has circulation problems that affect his fingers and toes and various other problems connected to POTS it may be worth trying to rush through the referral to Rheumatologist and explain the issues... my lad suffered for 4 years before he was eventually diagnosed privately yesterday. It’s such a long journey when they are in constant pain... good luck

[DISC]

You can get Thermoskin gloves tocirculartion. I got mine off my Occupational therapist. try and see an OT as they always have so many ideas. You can buy them off the internet too. Apart from that try to always wear gloves. I often scour the DIY shops for different types of work gloves as these can be waterproof and also come in different sizes so they can be tighter fitting. If he uses a computer you can get USB heated gloves which you plug in and wear whilst typing. Some supplements like Turmeric might help with circulation and warmth. Wear layers and invest in thermal clothes. my entire wardrobe seems to be thermal and fleece and my t-shirts never get warm. I envy even in the summer other people wear one layer and look summery while I have a couple of coats on etc. I hope this helps? Good luck.

[Jay66]

We all get an increase in pain levels and fatigue levels when temperatures drop (and often when temperatures go too high as well). He needs to wrap up well even indoors to keep his core temperature high. Definitely do as DISC suggests and wear gloves. Fingerless gloves are fine. Microwave heated pads for on the spot warming are brilliant. Other than that - my advice is take the pain killers. Pain is a totally pointless thing for us, and if pain is impeding your abilities to function, I would say to take them. They won't help his fatigue levels much though.

Weirdly, I find a short walk helps - perhaps it boosts circulation? As long as you don't get cold, it definitely helps.

[neoclectic]

For me, unsulfured blackstrap molasses works well. Also, large dosages of Redmond salt and MSM. I recently tried boxing at the gym and that caused elbow bursitis where my elbow swelled to look like a golf ball. The conventional solution requires drainage with a needle but it can always come back and refill. After getting a sticker shock from the specialist of $275 just to stick a needle in it and drain it with no guarantee of fixing the problem and having recently learned about my own EDS, I opted for a different option. I bought MSM and took 12,000 mg a day. Within a week, the swelling was gone but the slight discomfort remained. So I have continued using it nonstop and now it is all healed and there is no pain. I continue to use this now knowing my genetic predisposition to injury. No more boxing for me. Also, have modified my weight training. I always struggled with injuries all my life where they occurred every couple of weeks because of trying to hard. Now, I do moderate lifting with 3 second reps to maintain the tension in the muscles but not injure them. That and the MSM are keeping me well. Hope this helps. EDS is an absolute pain in the butt but now I'm glad to finally know what causes all my chronic problems. Be aware that EDS also causes havoc on your immune system. All my life, it was severely difficult to get rid of a cold once I got one and I did very often. Now, in my 50s, I have realized that I must maintain my immune system in top shape to prevent disease because it cannot do it alone. So, I use Ultimate Echinacea prophilactically every week and that does the job. I rarely get a cold now and if I feel like I'm starting to get one, I load up on the tincture about 4X a day for three or four days and it prevents the cold from turning into a full blown calamity. I'm very upset that all my life not a single doctor that ever saw me ever figured out my underlying condition. I found out by watching an episode of Vikings on TV where the youngest son of the king was born unable to use his legs. I decided to Google him and Wikipedia had an excerpt on his life and on his condition. He suffered from EDS. The writeup then went into length discussing EDS and its symptoms and that's when I realized that I had it. What are the odds of me ever watching a TV show and then Googling a historical character out of curiosity to then finding out what has tortured me all my life is the same condition that this former son of a king had? I once was told by a doctor that medicine is an art which speaks to its inexact nature, hence, its very severe shortcomings. I'm looking forward to the future of medicine and of how AI will help to fix this problem once and for all.