LindsayWhen I was younger, back before everyone’s dog was doing yoga, I was able to put my legs behind my head. As in, if sitting on my bum, I could tuck my ankles behind my neck. It was basically a useless party trick that, much like my former ability to juggle, I’m surprised didn’t land me more dates.
Over the years I stopped being able to do it, which is probably a blessing in disguise, because the only ones who look good putting their legs behind their heads are drunk 18 year old chicks. Although as I learned the other night, 30-something year old slightly inebriated chicks who fart and then fall on the right side of their face while trying to put their legs behind their heads are pretty entertaining too.
That totally did not happen to me, by the way. On a completely unrelated note, please ignore the small bruise near my right eye.
If you’re familiar with postural orthostatic tachycardia syndrome (POTS), you may also be familiar with its comorbid cousins, mast cell activation disorder (MCAD) and Ehlers-Danlos Syndrome (EDS). EDS is a group of connective tissue disorders. There are multiple types of EDS, but it generally includes joint hypermobility, joint pain and dislocations, stretchy skin, easy bruising and poor wound healing. It’s not uncommon to find POTS, MCAD, and EDS together. I call it the Devil’s Triangle. Sometimes gastroparesis joins them to create the Four Horsemen of the Apocalypse.
Apparently a 2016 study found a single genetic mutation may be responsible for POTS, MCAD, and EDS. According to this article, 30% of POTS patients have MCAD and 30% have EDS.
I have mild MCAD, mild gastroparesis, and moderate POTS, but given that I can’t even touch my toes these days, I have never paid much attention to EDS or joint hypermobility syndrome (JHS). Of course, the reason I can’t touch my toes is because of pain and sciatic issues, but I have never had any reason to suspect EDS or JHS. In all of the information I have read about POTS, and through all the conferences and webinars I have attended, like this one, I always napped during the EDS/JHS sessions.
Recently (if 6 months ago is recent) I was referred to a rheumatologist for joint pain. There’s some arthritis in my family history and a rheumatology consult was the logical step. The rheumatologist was familiar with POTS, so instantly I liked her. We went over my medical history and symptoms, and she performed a physical exam.
Rheumatologist: Well, the good news is, I don’t see signs of rheumatoid arthritis.
Me: That’s good.
R: I think your joint pain is probably just due to your hypermobility.
M: My hypermo-what?
R: Hypermobility.
M: What? No. No. No. No, I’m not hypermobile.
R: Yeah. Little bit. See how your joint can do this – that’s not normal.
M: YOU’RE not normal.
R: And see how fat your thumbs are? That’s because you can move your thumbs like this (shows my thumb hypermobility).
M: So I’m hypermobile with fat thumbs?? I’m starting to understand why I didn’t get a lot of dates.
After we moved on from discussing my chubby thumbs, the rheumatologist asked a number of hypermobility related questions based on the Beighton scale and other typical hypermobility symptoms. Am I double jointed? (In some places.) Where do I have joint pain? (Ankles, knees, hips, elbows, back.) Can I do a back bend? (I see my reputation precedes me). Touch my toes or put my hands flat on the floor? (God, no.) Do my joints ever dislocate? (My shoulder popped out a couple times as a kid.) Do my joints crack or pop often? (Did you not hear my fat thumbs?) Do I have soft stretchy skin? (I moisturize, thanks for noticing.) Are my fingers or toes abnormally flexible? (I could brush my teeth with my feet, if that’s what you’re asking.)
The rheumatologist wanted to run an ANA blood test to rule out rheumatoid arthritis or other autoimmune conditions as the cause of joint pain. The results came back just barely positive, which the doctor explained is common in the general population and not indicative of any autoimmune illness.
So, the good news is I don’t seem to have an autoimmune condition. I suppose the bad news is, I gained a diagnosis of JHS (I’m not quiet sure of the difference between JHS and EDS), and my joint pain isn’t going away anytime soon. And, I’m going to have to start paying attention during the hypermobility portion of all of the POTS lectures. There goes my conference nap time.
So hypermobile friends: give me the 30 second rundown of everything I need to know about hypermobility.
“That which yields is not always weak.” – Jacqueline Carey
Smell ya later.
– Linds
Welcome to the Clan my bendy sister 😀 Here’s my 30 second rundown on all things Zebra:
– it’s no longer called JHS but Hypermobility Spectrum Disorder (HSD). HSD and hEDS are thought to be the same disease, just on a spectrum.
– new diagnostic criteria etc. were internationally devised last year, see my links page for info https://mastcellblog.wordpress.com/links/link/
– get yourself a heat pad and ice packs, you might need them. Oh and save up for braces off Amazon, you might need those in the next decade too as the peri-menopause hits (not saying you’re old but your hormones will probably be stalked by the grim reaper sooner than you think).
– it’s not all that bad. No, wait, it probably is all that bad particularly when you hit your forties, but hey you have MCAD and are still managing to get drunk so it could be worse (not that I’m jealous or anything. Well not much. Ok so I’m jealous 😉
Jak xoxo
See – this is why I need the rundown. I knew you’d be an expert, Jak!
I already have lots of heat and ice packs and use them regularly, so I’m set there. Do you use any pain relief cream, or do they not help much with joints?
Fortunately, my MCAD, much like my gastroparesis and hypermobility, is mild and I can have the occasional drink. My mast cell acts up with red wine, so it’s a no-go, my POTS acts up with beer, but it’s tolerable.
I’m already on hormones thanks to a particularly awful experience discontinuing birth control pills. My doctor says I’m already in perimenopause. Damn my body for always being advanced for its age.
I do use pain relief creams and find them useful. I use Ibuprofen gel a LOT (cos as you know I can’t take oral painkillers). I also use biofreeze gel (ie a cold gel) and a muscle balm with Arnica in (we have a company called Weleda here which is good, don’t know about America) – it’s good for bruising as well as achy, tight muscles.
No longer being bendy is very common once you reach late thirties. I’m now as stiff as an ironing board and would probably not even pass the Beighton these days but is supposed to be taken into account according to the new criteria.
I’m shocked you’re already in peri as I thought you were still considering children 🙁 When it comes to both MCAD and HSD/hEDS peri seems to upset the apple cart for some women so you just need to be aware of that. I was also offered a bone density scan in my mid forties as oteopenia can be an issue in hEDS. Oh, and a heart scan too where they found a murmur I didn’t know I had but thankfully no mitral valve prolapse which is what they look for in hEDS.
Sorry you have this on top of everything else Linds but hopefully it will stay mild and you won’t have too much hassle from it xoxo
Thanks for the info. I have been using a CBD cream (now that marijuana is legal in California it’s almost easier to get than traditional pain-relief creams).
So, I don’t actually know if I’m in perimenopause or not. When I stopped the pill a few years ago my hormones went apeshit, and my gyno told me that stopping the pill had launched me into early perimenopause. My hormones have calmed down a bit, but things are still nowhere near where I’d like them to be, even after being on hormone therapy for a couple years. I’d like to have kids, but I turn 40 next year, so it’s looking less and less likely. Although, to be honest, I’m not sure how I would take care of kids along with all of these illnesses, my father-in-law, and this crazy dog.
Interesting to hear. I have POTS myself.
Normally you have to score 4 or more on The Beigten ScaleI think to have a diagnosis of EDS JHS.
How did you find out you had mild Gastroparesis?
That’s what I was told, too – 4 on the Beighton scale. According to my rheumatologist, I scored a 5.
I was diagnosed with gastroparesis many years ago after a gastric emptying study. I’m fortunate that my gastroparesis is mild and I’m able to manage it without a feeding tube.
Oh OK. I have a lot of GI issues. That sounds like a horrible test though, I’m not sure I’d want to ingest radioactive stuff. how long does it take to pass out the radioactive stuff from your system? Also I get a lot of rashes and sometimes hives too, how did you find out about your MCAD?
I actually didn’t have any effects from the gastric emptying test – one of the easiest I have ever done. My test lasted 4 hours. I was given a scan immediately after eating the eggs, 1 hour after, 2 hours after, and then 4 hours. I was allowed to leave the testing center between the 2nd and 4th hours, as long as I was back on time.
I have a lot of GI and itchy/rash issues, so my POTS doctor thought I might have MCAD. I was prescribed an H1 and H2 blocker and cromolyn. I was given the 24 hour urine test, which came back negative, but I was told the results of the test can depend on whether the patient was symptomatic that day. Because the standard MCAD treatment has significantly helped my GI and skin issues, I was given a diagnosis of MCAD.
How did you find out you had mild gastroparesis and MCAD?
My rheumatologist basically told me HSD is also what they give you until you can get in to a geneticist to formally receive an EDS diagnosis. You might be a bit lower down on the spectrum, or you might have formal EDS, but it’s kind of tricky to bill for EDS until you see a geneticist. You should ask about a referral as it takes months, but can get more stuff covered. Like, my dumb vision disaster is easier to bill under insurance now that I have “full” EDS vs. just something insurance treats like a joint-only problem. Also, I blame you for the fact I just wanted a travel toothbrush brushing my teeth with my feet just because you suggested it. It was a little messy – I’m flexible but not necessarily graceful with my toes – but I did it.
Thank you – I was wondering what the benefit would be of finding an official diagnosis and you answered my question.
P.S. Sorry about the brushing teeth with feet. Although, it’s a good skill to have in case of an arm emergency 🙂
There isn’t really much of a difference between HSD and EDS, but it’s hard to get the full EDS diagnosis without a geneticist doing the evaluation. It’s worth it for when you end up having non-joint EDS complications like the vision fiasco I recently had. Easier to deal with insurance. Also, I blame you for putting silly ideas in my head. I wasted a travel toothbrush brushing my teeth with my feet just because. It worked, but was a little messy. I have the flexibility but not necessarily the proprioception to not dribble…
you have this wonderful ability to talk of illness and doctor’s visits and make it funny as hell. You really put an image in my head when “your friend” farted and fell on the right side of her face. Beer out the nose on that one
thank you! that’s very kind of you to say.
Hi Linds, I have the trifecta too though not officially diagnosed with heds/jhs but my sister is. I have been told by the geneticist that I have a connective tissue disorder but that can’t test for it yet (heds/jhs). I have the mitral valve prolapse and velvety skin and was also able to do the legs behind head and touch the floor with my hands flat and knees straight as a child. Not now though of course. I have hit peri menopause and I’m having more issues. What hormones are you on now?
I’m currently on bioidentical progesterone. It has helped balance my hormones a little, although they’re certainly not where they should be. Are you on any hormone replacement therapy, Jo?
Just nominated you for Blogger Recogntiion Award. 🙂
Thank you!! That’s so sweet of you!
Here is the link. coolncreative.wordpress.com/2018/09/05/blogger-recognition-award/