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Ehlers-Danlos Support UK
2,108 members β€’ 663 posts

This is all new to me.

Hello Everyone.

I have suffered from various health problems that the medical profession was not able to give answers to. Nothing too serious though until my menopause came. Then my health went haywire. I have a good GP and I haven't approached him yet about this and I'm dreading doing so as I'm unable to go out due to current symptoms I've had since October. I've gone from being active to being debilitated in a short space of time.

The symptoms I get are GERDs, a hip that dislocates, back and joint pain, shooting and stabbing pains all over, extreme tiredness, a fuzzy brain, allergies that come out of nowhere, clicking joints, stiffness, spontaneous bruising and haematomas and an assortment of other things.

A friend of mine sent me an article out of the blue last week about EDS and MCAS and I was totally surprised by what I read. Things that I have always lived with and didn't give a second thought to like deafness, tinnitus, being a bendy child, skin problems, my eye sight problems now are making sense. Then my kids started talking about it and I found they also have similar symptoms too so I asked around my family and there were similar symptoms experienced by my parents, grandparents, aunts, uncles and cousins. At the moment there are about 12 of us and I'm still getting information.

This is totally nuts to me but it also explains those times where I went to the doctor's and they couldn't tell me what's wrong, over the years.

So I plan to go to see my GP in the next two weeks. Does anyone have any ideas as the best way to put it across to him or what tests/assessments will be done? I've already written a list of symptoms covering my past plus the kids as I won't remember when I'm there.

Thank you.

10 Replies
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Be careful that the MCAS isn't being triggered by mold or contamination in your home or workplace. Those with EDS are particularly susceptible. That's how the conditions overlap. Exposure to microbes exacerbates joint laxity. So suddenly joints and subluxations etc suddenly become evident or worse!

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Thank you Saassii. We have had a mold problem in the bathroom because of a ventilation problem before so I'll keep my eyes open.

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The tiniest "looking" bit is lethal, especially to Zebras. You can't see virus, nor bacteria and they're on par with similar particulate size as mold, only once mold multiples until you can see it?!?! Now think... Mold, virus, bacteria all cohabitate together. Bacteria arrives 6 hours after favorable conditions, mold 24-48 hours later.... So if you can SEE mold, everything else is rampant. What you can have been exposed to, can change your life. I'm living this with you and trying to bring awareness to help others, before it's overwhelmed and damaged them... Beyond repair. Much love xx

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Thank you for the information. I have some understanding of bacterias, virus and mold because of my profession in the past as a haematology nurse. I've suspected that EDS/MCAS influences the immune system as we all get weird stuff and no one seems to have an answer as to why. Makes a lot of sense.

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Yes mast cells are white blood cells, part of the immune system and they are located within the connective tissue throughout the body. When they leak or degranulate, inflammatory mediators are released, one of which is tryptase. Tryptase acts like a meat tenderizer.... That going on in the connective tissue for someone with EDS means more joint laxity and it can be suddenly triggered. The body attempts to repair with collagen but the body makes defective in EDS so not even the repairs are effective. The best help is avoidance. I cover all the plug holes and drains in shower, dry drains on floor as even those act as a trigger now I'm sensitized. If you have a read about the plethora or microbes that inhabit biofilm within drains you'll see it's even a common problem hospitals know about as sinks cannot be placed in operating rooms and beds closest to hallway sinks have greatest occurrence of infection and sickness. Be careful of infected air conditioning systems that aren't regularly decontaminated. Don't sit near outdoor drains on the ground near restaurant seating. I use a squeagy in the shower to get all water, followed by towelling dry to entirely avoid mold in there at all times. Have window tracks cleaned regularly by someone other than yourself or use a full face respirator and protective clothing ensuring your masks seal if it must be you. Get rid of carpets entirely wherever they are, they house too many and if the carpet was ever wet, then there's an ongoing source there. xx

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Excellent reply. πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ»πŸ‘πŸ»πŸ‘πŸ»πŸ‘πŸ»πŸ‘πŸ»πŸ‘πŸ»

I’m a Zebra too. Sooooo allergic that I haven’t been able to go outside without wearing 3 layered allergy masks for over 34 years now. Have to keep the windows and doors closed year round. Use air conditioning (multiple health diagnoses necessitate) and an air purifier in my bedroom during sleeping there.

My hEDS has progressed to keeping me from sleeping in my bed for 16 months now. I dislocate everywhere. GRRR!!!!

You have just explained to me in this reply what multiple doctors including allergists could not. Thank you sweet friend.

EJ. πŸ˜ŠπŸ€—β™₯️πŸ₯°πŸ™

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So so happy EJ! Much love xxx

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You too sweetie.

xxxπŸ’—πŸ€—πŸ™

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I am tempted to say congratulations for finding out what might be behind all the difficulties you and your family have!

Luckily there is something that you can use with your GP. The Royal College of GPs has produced an EDS Toolkit that will take them step by step through the diagnosis for you. Some are refusing to do so, saying they haven't got enough time, so make a double appointment, print off and take the tick box sheet already ticked, and the url for the toolkit and get them to do it there and then. GPs no longer have any excuse for not diagnosing EDS!

rcgp.org.uk/clinical-and-re...

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Thank you Cyberbarn. This is a great help.

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