New here–here's my tale of woe

[bendychick]

Hideley hey everyone. Came across prettyill.com on a facebook group for EDS. I have not been officially diagnosed but suspect I have Hypermobile or Classic type. I am 38 years old and female. An aunt and 1/2-uncle on my Dad’s side both have MS (uncle died in his early 40s). On my Moms side there is some hypermobility, scoliosis, GI problems, and POTS-like symptoms. As for me I started life with delayed milestones (walked when I was 2), trouble learning tasks like tying my shoes or riding a bike, and periodic constipation. WHen I was about 10 and early puberty started, a lot of the other EDS symptoms started: my hips and shoulders started popping, the doctor said I had flat feet and my kneecaps were going too far from side to side. Also about that time I was treated for Irritable Bowel and had a lot of headaches. When I was in my early teens I started having skin and respiratory allergies to cigarette smoke, perfume, cleaning supply scents, the smell of bleach, detergent, lotion, cleansers. Developed an allergy to metal so all my jewelry had to be hypoallergenic, sterling, or 14k gold. I tried some foundation makeup once and broke out in a rash on my cheek that left a dark freckly spot I still have to this day. The “girl stuff” didn’t work right either from the start. When I was in my early 20s I was diagnosed with Endometriosis. It took 5 abdominal surgeries (2 open belly, 3 laprascope) and several years of low-estrogen birth control and Provera but finally got that in remission (fortunately I healed well from surgery too!). Along the way learned I was osteopenic. Went off the birth control/Provera and 2 years later went into early perimenopause at the ripe old age of 32.
2 years ago I had my left shoulder labrum reattached and joint capsule tightened. My primary care physician suspected EDS and refused to release me for the surgery until I saw a cardiologist. He also suspected EDS. Checked my heart etc. all were fine except I had history of 135/90 blood pressure so he put me on meds for that. I saw a rheumatologist who said I have Benign Joint Hypermobility Syndrome. Depending on the day I am a 4-7 on the Beighton Scale. My knees are not hypermobile but the kneecaps flop around. The Rheumy would not Dx me with EDS or refer me because I have no confirmed cases in my family (even though there are symptoms which I listed on a piece of paper for him-argh) and I am different than his ONE patient who is tall and slender (I am female and 5’2) and has super stretchy skin and is disabled. Apparently I am too high-functioning to have EDS. I also saw a GI who scoped me and checked for Crohns, Celiac, and cancer all of which were negative. I asked if hypermobility could be related to my symptoms and he said absolutely not. I asked specifically about EDS and he said I’m not tall enough (again with the height! where does that come from?). So I have a small haital hernia, acid reflux, and irratable bowel. Since I was a young teen, something is popping in my hips–either they are coming out of the socket or a tendon or muscle is snapping, so I am getting that looked at next week. My lower back is curved so badly the only parts that touch the wall when I stand are my tailbone and lower neck/shoulders. My EDS friends say my skin is stretchy but not crazy. I have trouble sleeping because I cannot find a comfortable position that accommodates all my loose joints, and I am in constant pain–not blinding pain, but it is always there like background noise. I get a lot of headaches that start in the back of my head/top of my neck and work their way around the top of my skull to my eyeball and also down my upper traps. The only thing that relieves it is ice on the back of my neck and forehead and Maxalt which is a migraine med. I have developed brain fog (I am an A+ graduate student but have trouble following a conversation or TV show), some word retrieval problems (drop syllables, transpose letters, words come out in wrong order, mix homonyms), and short term memory problems (long term is fine). Had my vitamin D checked and it was 21.
In early February I am seeing a physiatrist, recommended to me by an EDSer, at a well-respected comprehensive PT/OT/rehabilitation center in the area. It is not so much the wording of the diagnosis as getting proper care for symptoms and catching things that would be otherwise overlooked. For example, without a diagnosis of EDS, other things like POTS, MS, or Chiari might not be considered.
And that my friends is my tale of woe in 1500 words or less 🙂 I am so very grateful for the World Wide Web and all the friends I have made as a result, because I don’t think the dots would have ever gotten connected without them.

[PalominoMorgan]

Welcome my twin. Seriously. We share a lot of the same symptoms. My back sounds like yours but is a train wreck when you see the lumbar and cervical MRI. I was diagnosed last August after I self referred to Dr Francomano. My PCP told me I didn’t have the eyes for EDS. Huh? Per Dr F I do have grey sclera though. Guess she wanted me to have blue? Anyway, per my picking on DrD, myself, and a friend of DrD’s in DrFrancomano’s office about all the tall women there and “what was that stereotype about EDS and tall women?” DrFrancomano replied, “only one subtype. Only one subtype.”. I was feeling short at 5’10” in the waiting room but there are lots of bendies who are not tall.

Anyway, welcome. You are definitely in the right place. You sound like you have EDS, possibly some mast cell issues as well, and those headaches sound an awful lot like high CSF pressure headaches. Try sleeping in a soft collar at night and see if you notice less headache when you wake up. I know it makes a huge difference for me. Raising the head of the bed a few inches can help a lot too.

[Dr. Diana]

Welcome home, Bendychick! 🙂 I think you’ll see a lot of similarities in your symptoms with most everyone else here! (Palomino — I’d forgotten about what Dr. Clair said — that was SO FUNNY!). Bendychick — Palomino, another EDS friend and I were all standing, towering over the wonderful Dr. Clair Francomano. It was pretty funny, but she is right — only one phenotype is like that! 🙂
If I had to guess, I’d say that you fit The Driscoll Theory to a “T”. Did you see it on the site? Palomino is giving you great advice. I, too, get the impression you are dealing with mast cell disorders and hydrocephalus.
Please take a peek at the theory and see if you and your doctors agree that a trial of Diamox to reduce your pressure and double dose Zantac/Zyrtec doesn’t make sense to you. If you respond well, then full treatment is likely in order. And, wow, can it be life changing!

So glad you’re here!!
🙂 Diana

[PalominoMorgan]

Which subtype are the amazons? Hypermobility type? I know anybody with Marfan traits should be tall. You’d think I’d know this but I feel like its a trick question. Lol.

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