Hi… im just a little curious to know if anybody on here has hypermobility as well as chiari?
I do… and im being tested for connective tissue disease.
my knees are in soooo much pain right now! its so bad… i struggle to move in bed.
Hi… im just a little curious to know if anybody on here has hypermobility as well as chiari?
My son is being tested next week for EDS, is that what you're referring to? He has the elastic skin, partial joint dislocations(subluxation?), and terrible joint pain. He is only 20. He has problems with all major joints popping/sliding out of place and has had a lot of problems with his back. Was also diagnosed with scoliosis. I have had problems with my joints but only in the last three years. Knee sprain that left the knee weak and unstable, problems with my ankles, feet, and one hip. Also hands, wrists, and one elbow. Before that, just able to do a few "tricks" with my hands and my hips were very flexible. At his age, I could sit on the floor with the soles of my feet together, rest the outsides of my legs flat on the floor, and bring my heels to my groin. If I just made a triangle sitting like that, with my feet a little further out from my body, I could touch my nose to my toes. LOL. We both have CM1, he was diagnosed at 17 and I was diagnosed last year, I have had the surgery but he has not yet.
hi lulus mom, thankyou for replying :)
i find this so interesting! i think it is EDS that my blood as testing for.. i get the results this friday.
from the sounds of it, your son could have classic EDS (which i think includes stretchy skin)
i think i only have the hypermobility type, as my skin is not stretchy lol!
same as you, my hands have always been my party trick at drunken parties!
and i too can touch my nose with my feet, it affects both hands/knees/elbows but not my hips.
i am also flat footed which is common for hypermobile people
ive not had chiari surgery, but may do so in a year.
its really interesting that both you and your son have chiari and bendy joints!
im 24 and only started with joint pain august 2011 but have always been hypermobile
please let me know how your son's testing goes xx
hey abby, thanks for replying too :)
just curious, when your knee pops out of joint - what does that feel like?
because i swear my knee caps move out of position and my knee feels really loose, like i need to "crack" it back into position. when this happens, i cant put any weight on it. and after a bit of walking it usually goes back to normal.
this article might help - its VERY LONG READ, but it just explained so much for me!
just to add.. the section near the end which talks about your adrenalin and fatigue etc.. is the most interesting part xx
just thought i'd update you.
I saw my rheumatologist today and thankfully I dont have EDS - connective tissue disease.
all my blood tests were normal (checking arthritis etc)
however my CRP (inflammation) was slightly high and my calcium levels are low.
he looked back at my GP's history of blood tests which have consistently shown i have slightly low calcium and he's surprised my GP has never told me.
he is sending me for a bone scan and done further blood tests for parathyroid and my iron levels
so could be parathyroid issues, and also questions SAPHO syndrome!? because i have skin issues too.
hmm... anyway - in case any of you suffer with tingling in hands/feet - and around your lips/mouth -it could be due to low calcium levels.
hope you are all well xx
I was talking to Abbey about this a few nights ago. My daughter is CM Negative, but has a Spinal Kyophis(kinda like scoliosis but it curves into your body). She has always had loose joints.
Just an update, my son was evaluated and has been diagnosed with EDS. Went to a geneticist and she evaluated personal and family medical history, did an exam and that was that. She said he has the Hypermobility type and there IS NO MEDICAL TEST FOR IT. They cannot test blood or tissue to determine it, it is strictly by history and exam. The RF levels you mentioned will be normal and will not show EDS, it is a connective tissue disease caused by faulty collogen production and not arthritis although early arthritis is another symptom. RF or Rheumatoid Factor will not be elevated. She said I have it as well and we are setting up another appt for me to more fully evaluate my case and history etc. So, please question your rheumo regarding this or ask for a second opinion. Out of the six or so types of EDS, only 2 can be diagnosed with tests and those are skin biopsies, not blood.
I also have Ehlers-Danlos. I was officially diagnosed last summer by Dr. Francomano (AMAZING!), but all the symptoms were present since I was a kid. I haven’t been officially diagnosed with CM, since I just made the connection of CM to my symptoms, but I requested a referral for an MRI this week from my GP. I never made the connection before because many of CM and EDS symptoms overlap (and honestly CM scared me so I didn’t want to look more into it).
There is a lot I want to address with the posts, but like a lot of you here, I have issues concentrating and forming proper sentences so bear with my bullet point brain storm J Its easiest for me to convey my thoughts.
- I am able to do all those “party tricks” too. I try not to anymore because it’s not good for the joints. Over extending isn’t advised, but sometimes it’s hard to keep in check. The weirdest trick I do is making my left elbow touch my right shoulder behind my head (pictured below). I score a 9/9 on the Beighton scale.
- I have very unstable joints. Ankles are always turning in, that combined with poor balance = a lot of bruises/injuries. I have become a professional at falling though.
- It’s common for EDSers have loose kneecaps – at least that’s what I was told. I thought this was weird and didn’t realize mine were “loose.” This is like a lot of my eccentricities; I never realized I wasn’t normal until I started researching. Now I go up to friends and family and ask/compare body functions.
- The Alan Pocinki Hypermobility article is my favorite EDS read. So helpful and informative. I love it.
- I agree with Lulu’s Mom comment about the blood test. EDS cannot be diagnosed that way, so it seems a bit confusing your doc would say that. At least your rheumy helped though, I went to one and she basically brushed me off. I went in to be evaluated for Lupus, but didn’t have it. She mentioned hypermobility on paperwork to my GP but wasn’t helpful beyond that.
- Just being aware of EDS and the complications it creates makes a big difference. Having an official yes or no diagnosis really didn’t change anything other than validated what I had been going through. I feel like I am still where I was 2 years ago when I first started looking for answers, if not worse. The trial and error process with EDS, let alone with other conditions, is frustrating and long. I have been on numerous medications (NSAIDS, muscle relaxers, Opiates, Lidocaine, Voltaren, specially made compounds, ADD medication, etc.) and tested out various treatment options (dry needling, massage, yoga), but I have yet to find something that I can say works for an extended amount of time. Many of the medications I take will work in the beginning, but then after a month I don’t notice anything when I take the meds. I think a lot of it has to do with my tolerance to medications. It seems that I am one of those who need higher doses to notice results, but since this is something that I will have to deal with the rest of my life I am hesitant to take more and more medication because I worry what it will do to my body in the long terms (I’m 26 years old). In reality I am not in the same place I was 2 years ago. Physically and emotionally I feel the same because I have yet to find what works for me (it’s hard when my symptoms are progressing), but knowing what I have makes all the difference. The confirmation that I have an illness gives me peace of mind. Without it I felt like I was going absolutely crazy and that it was in my head. At least now when I tell people about my issues I have backing. The other thing that has made such a difference is the support of the online communities. Knowing that I am not the only one dealing with all of this confusing madness really helps. It is also amazing because of the vast information that is provided, since many doctors haven’t even heard of our conditions, let alone friends and family.
So I kinda went on a rambling tangent. But, yup you are not alone with the hypermobility.
As for the knee pain, I wish you the best of luck finding relief. Have you ever tried compression stockings? I only started wearing them about 2 months ago. I never thought that they would be a viable solution for me, but I had MRI which showed enlarged veins in lower legs (due to EDS/poor collagen). This was causing blood to pool and cause a significant amount of my aches and pains. I started wearing 30-40 mmhg knee-highs and thigh-highs and they have helped a lot – to the point where I was able to reduce the frequency I took my pain medication.
Maybe they would help with your knees? They would help with the blood flow, but also help keep the knee cap stable? They are expensive, but hey it’s worth a shot right? I hope some of this information has helped and if you ever have any questions/comments just let me know!