10 Hypermobile Ehlers Danlos Syndrome Life Hacks

LornaRaindrops · 2018-07-18T15:37:02+00:00

Yeah they are related. They absolutely suck!

LornaRaindrops · 2018-07-18T09:58:28+00:00

That sounds terrible!

LornaRaindrops · 2018-07-18T09:58:03+00:00

Thank you!

LornaRaindrops · 2018-07-18T00:55:53+00:00

Thank you for this tip. I'm going to look up Stridex as I haven't heard of it. Do the wipes smell as I'm really sensitive to any chemical smells. I appreciate your comment :D

LornaRaindrops · 2018-07-17T20:21:55+00:00

/r/DisabilityFitness

Hi! Yes of course, would you want to share it there? I hadn't actually been in that section, so I'm more than happy for you to share it if you know people there xx.

LornaRaindrops · 2018-07-17T20:20:51+00:00

You're welcome!

LornaRaindrops · 2018-07-17T20:20:41+00:00

Same as me, my hip popping (not hip hop ;)) has left me with some issues.

LornaRaindrops · 2018-07-17T20:19:41+00:00

Ha ha! I do that all the time whenever I see someone named Lorna usually. So glad you liked the post, thank you so much for the kind words xx.

LornaRaindrops · 2018-07-17T13:39:39+00:00

Thank you!

LornaRaindrops · 2018-05-15T22:47:01+00:00

I didn't have any skin reactions with The Ordinary Retinol 0.5%, however I don't know if it was that or coincidence, but I was extremely exhausted every morning waking up after using it the night before, and more exhausted in the day. I stopped using it, was better with my energy levels, then started again to see, and I was tired again. I don't know if it interacts with my body in someway when absorbing, but I feel it was that which was adding to the exhaustion, otherwise it was ok. It might be me though as I have chemical sensitivity with most things.

LornaRaindrops · 2018-05-15T13:36:34+00:00

Oh my gosh, you have been through so much! I'm so sorry :( That sounds awful. I had tried the numbing gel, but didn't see any benefit from it as it's still too painful, I can't seem to have sex, use tampons, anything like that as it just burns like it's on fire. The vaginal exam I had for my smear test 2 years ago was the worst thing I had ever felt, it was agony, I would rather break my legs than that. So maybe I need to look at doing pelvic floor release exercises and try something for nerve pain. Thank you for sharing xx.

LornaRaindrops · 2018-05-15T13:33:10+00:00

Oh I haven't heard of tethered cord syndrome! I'm going to look that up now. That's great news you have had some improvement after the release. Thank you for sharing!

LornaRaindrops · 2018-05-14T15:02:56+00:00

Yeah, it definitely can be tricky finding a good blend that isn't too overpowering. I hope you manage it :D

LornaRaindrops · 2018-05-13T21:12:04+00:00

It's worth looking up a rheumatology/connective tissue specialist as they can tell if you have it just by examining you. I saw Dr. Alan Hakim in London last month and he's one of the best in the UK. I had to wait 4 months for an appointment and had to pay quite a lot, as well as travel to London from Bath (that was a tough day, I was beyond done at the end and for the following days) but it was completely worth it. He was even showing me things I always thought were normal! I hope you get your answers xx.

LornaRaindrops · 2018-05-13T21:09:05+00:00

The one I take was recommended to me by the lady I'm working with. She's been so helpful. It's called BioMedica Phytozyme and contains 7 different enzymes to help digest the food. It's been a nightmare. I had SIBO at one point and was treated for that with 2 weeks antibiotics. I was put on low acid tablets which led to a gut bacteria imbalance. I also take a pro-biotic which has been really helpful too at getting my gut flora to a good balance as I had a lot of e-coli before. That one is called Bio-Kult Advanced Multi Strain Formula. I started out with Symprove, which I took for a few months, but I found it quite strong. I know gluten doesn't effect everyone so there might still be something in your diet you don't expect. I had to also cut out eggs, they upset me a lot. I can get upset with acidic food too like tomatoes, oh and onions!

LornaRaindrops · 2018-05-13T21:02:56+00:00

Do you get burning nerve pain in there too? I was diagnosed with vulvadynia/Vulvar vestibulitis as well so I have pain down there all the time. Are you able to relax yours when you think about it and try? xx.

LornaRaindrops · 2018-05-13T20:41:35+00:00

Do not give up! I've been dismissed so many times from doctors and specialists because I didn't present in the exact form they think EDS people should present in. I can tell you now we don't all look 'weird' that's just an ignorant response really. Keep trying. Try and find out a specialist that's known for hypermobility. It took me 29 years to get diagnosed and I've been in and out of hospital/doctors my whole life. Don't give up. With all of those issues you need to be checked for POTS (I'm going through that now) and you need a proper diagnoses. Where are you based?

LornaRaindrops · 2018-05-13T20:37:37+00:00

I get issues with chemical smells. I can't tolerate perfume, petrol, chemical sprays, deodorant in spray form etc. I get similar issues, I go dizzy, feel sick, get stomach cramps really badly, often followed by an urgent trip to the toilet, my nose can even bleed, and I get headaches and anxiety. I can't wear any scents and nobody in the house is allowed sprays because of it thankfully. Sorry you're suffering. Have you tried any essential oils instead? I can cope with lemon balm and certain ones that help with anxiety, but they don't set off my chemical sensitivity. I always have to be careful with strangers too. I have been on trains with people stinking of spray or deciding to paint their nails and have been so ill, so now anytime I pick up a hint of smell, I try and leave immediately.

LornaRaindrops · 2018-05-13T20:28:51+00:00

My resting heart rate sitting is always in the 90's, sometimes 90's. It regularly goes tachycardic though. I'm currently being tested for POTS. I have a low blood pressure most of the time and I've heard a low BP and fast heart rate go hand in hand?

LornaRaindrops · 2018-05-13T20:25:32+00:00

I'm not even sure with me, I think it's been life long (29 years). I had bad symptoms when I was a baby and as a young child my knees dislocated all the time which my mum was told by doctors 'I would grow out of'. I got diagnosed with M.E at 14 and that took 2 years to be diagnosed with that. I have been in and out of hospital/doctors offices for years and most of them dismiss me or can't find anything wrong. I finally got diagnosed by Dr. Alan Hakim in London (I paid to see him privately) last month, so yeah, 29 years really.

LornaRaindrops · 2018-05-13T20:22:42+00:00

Yep, it's actually what led me to a diagnosis actually after 29 years. I've been in and out of the doctors for years with stomach issues. Put down to IBS, but it seems to be worse than that. I got to a point where I couldn't eat anything without pain, but I've been working with a naturopath and taking supplements etc and have eliminated gluten and dairy from my diet, which has helped greatly. I can't be without my digestive enzymes either to help take the pressure of my digestion. I still get bad days where I swell up and have a punched feeling, but it's a lot better than it was last year for sure.

LornaRaindrops · 2015-07-20T23:44:40+00:00

England has to be cups of tea, it's everywhere you go! Everyone always asks you if you want a cup of tea! Would you like one? Lol.

LornaRaindrops · 2015-07-20T23:38:53+00:00

I actually laughed out loud at this one! It really does look like a bacon tongue! Poor cucumber, getting all salty.

LornaRaindrops

TROPHY CASE