A Question For Those With Eds- Joint Hypermobility

[sandymbme]

I got my dx of EDS type III/ Joint Hypermobility Disorder fairly recently. It was first thrown out last year, but was finally confirmed in April of this year. So I am still trying to learn to cope, and make sense of this latest in my string of "tags". In the last 6-12 months alone, my pain level has skyrocketed, and I seem to be deteriorating at a frightening rate. I know that everyone experiences disease differently, but I am really getting very frightened, for a number of reasons. The big scare that is actually only ever so slightly worth considering is the, according to my doctors, 1% chance that I in fact have vascular EDS, which scares the ***** out of me! I am being sent for DNA testing to properly rule it out, and they don't think it is likely. BUT, when I had my hysterectomy in January they had a terrible time removing my uterus because the organ was literally falling apart. In addition, my mother had an episode about 10 days ago where "one of the major arteries on the upper part of her heart spasmed, causing damage to the heart muscle". (her doctors are still trying to figure out what the heck happened and why, so I am quoting recent email)

Obviously, I am going to be calling Dr. Grubb's office in the morning and sharing this info, I am admittedly spooked. Not to mention just the progression of my own illness has me terrified I am being unrealistic in hoping I can walk down the aisle next year. My joints are failing at a downright alarming rate. My hips are at a point now where I am having terrible trouble just sleeping because of the pain. Walking is very difficult, I can't go more than a few steps without my cane. (Thank God we bought a small house! And three cheers for the first floor master and first floor laundry!) My jaws lock on a near daily basis, preventing me from eating because I can't open my mouth wide enough to allow for food. I think what scares me the most is the fact that my hands are starting to cause me a lot of pain. I depend so much on my computer for my "social life". It is really, really hard for me to go anywhere, or do anything. I am so afraid I won't be able to type.

So, for those of you who have EDS, is the degeneration always this rapid? Is it at a consistent rate? Meaning, can I expect it to continue to happen so quickly, or will there be peaks and valleys? Have you found anything to help slow things down at all? I would ask in the EDS group I joined on facebook, but honestly, I have never met a more depressing group of fractious, argumentative people in my life! Not to mention that it seems half the folks on there are just trying to sell supplements and snake oil! So I figured I would rather ask here, and besides, I don't know how much my POTS is complicating things anyway. The one bit of sunshine is as least I see my pain doctor on Wednesday morning, so at least we should be able to get the pain under better control. Thank heaven for small mercies!

Sandy

[issie]

I've had episodes of fast progressive deterioration and pain and then had it reverse. I have to make sure I sit and sleep perfectly straight and have a good support for my head and neck. The things that have helped my pain the most is Tramadol and Bentyl and an occasional Advil. These block the pain signals and I'm able to be more mobile and I think moving more is in the long run the best thing to do. I've had times where I've had to use a cane and a wheelchair - but right now I'm able to walk - although slow and painful at times - without anything. When I'm going to travel in a car, I prop my arms up on pillows and wear an abdominal support wrap. I recently got a script for a neck brace for just traveling. I don't want to use any of these things all the time because it will make your muscles weaker. We need to keep our muscles as strong as possible or we will just wilt into a heap. Hope this helps a little. I KNOWWWWW about the pain - it's no fun. And it does seem to affect the POTS more. I also have a chance of having the vascular type of EDS - but opted not to do the check. Let us know what your results are - maybe I should re-think the genetic testing.

[issie]

Another thing to keep in mind is with EDS and the hyper-mobile form, it seems that we tend to have more osteoarthritis. When they checked me, they said there wasn't a single place that they looked that it wasn't there - in other words - I have arthritis all over my body. I think one of the best things for us with connective tissue disorders is anything that will support collagen - like Vit. C for one. This also helps our veins. I find that I need Vit. E and C and I was also low in Vit D. Hopefully, some others will chime in on this and tell you what has helped them. There are a bunch of us here with POTS and EDS.

[Chaos]

Sandy- Sorry to hear you're having such trouble with your joints! It's always something isn't it? I always find myself thinking.."I wonder what's going to decide to act up on me tomorrow?" If it's not my GI tract, it's my migraines, or my joints or my heart or my..... You know the drill. And I think we're both too young for this kind of organ recital!!! That's supposed to be reserved for people in their 80s.

Yes, I do have periods where my joints really act up and become problematic. I use a lot of kineseotape to hold myself together at times when they are flaring up. That and anti-inflammatories. And exercise as I can. I know we have this trifecta of symptoms with the EDS-POTS-MCAD type thing (+ your celiac disease) which can really make it hard to exercise. But, I think keeping the muscles as strong as possible around the joints is really important. Like Issie, I have a lot of arthritis. It's pretty common with people who have joint hypermobility because we wear our joints out by the way we live in our bodies. Most people who are really hypermobile are pretty weak as far as muscle strength which means more stress goes thru the joints. Muscles are like the shock absorbers for the joints so when they're weak, the joints take more strain. The challenge, like with everything else for us, is finding that balance between doing enough to keep strength and not wearing yourself out completely.

On a good note, I do have periods where I don't have much joint pain. Right now, I'm going thru a flare time where EVERYTHING hurts. I could pass as a mummy with all the kineseotape I have on these days.

That whole vascular EDS possibility is really scary. I was relieved to have mine come back negative. Hopefully your mom's event was not related to that. Keep us posted when you hear more.

Sending you lots of hugs. Hope they can help you get your pain better controlled.

[sandymbme]

It is 4am and I am wide awake and in agony. Can't sleep for the pain. My hips are so bad now I can hardly walk, and when I accidentally put all my weight on my left leg for more than a moment, I collapse. I see the pain management doc in the morning, thank the dear Lord! I have been told of some arthritis in my neck, but that's all I know of. The MRI of my C and and T-spine came back as showing only slight degeneration, nothing they felt unusual for someone in their thirties. They didn't do the lumbar MRI. I have a feeling there will be a lumbar and sacral area MRI in my future. What I fear is that it will show nothing, just like all the other tests. It is comforting to hear that the pain and degeneration can slow, or even stop for periods. Mine seems to have been happening so fast, I am terrified of what I will lose next. So it is really comforting to know it may not be like this always. Thanks!

Sandy

[rach73]

Hi Sandy,

I haven't been on in ages due to a hideous POTS flare and now an EDS Flare.

I got my EDS diagnosis in May 2011 but have always known something wasn't right as I was in constant low level pain for as long as I can remember.

My EDS has rapidly progressed over the last 12 months - problems using my hands opening jars, typing, anything that requires small controlled movement. My back is awful, my iliac crest pain makes me want to throw up. I feel like a 90 year old and Im 37. I am on morphine slow release tablets which take the edge off. Im hesitant to increase as I have a long life ahead of me and dont want to be out of pain relief options.

However I also know that my pain varies daily and on occasion I can wake up and never know that I had EDS. I can move my spine without popping discs or the muscles going into spasm. Its a strange wacky condition that waxes and wanes, so please dont panic.

My paternal grandfather had two aneurysms - none of us in the family have been tested for VEDS, we are however going to be having genetic testing shortly as both my sister and I have hypermobility EDS and bad unstable POTS.

Try not to panic ...... easier said than done I know. Just remember you aren't alone.

Rach

[sue1234]

I don't have EDS, but I have had the hip pain while sleeping. I found that when I got serious taking my prescription-strength Vit. D, the pain went away. I see you are Vit. D, but is it enough? Do you know what your D level has been recently?

[lgtaylor100]

That is very interesting about the vitamin D. My vitamin D level has been low for the past year. I have a script to get it retested and told that if it is still low I will need to take prescription strength Vitamin D. I have increased pain in my hips, calves and sacroiliac area recently. Is the prescription Vitamin D 50,000 mg.? My level on last testing was 21-22.

[sue1234]

For me, 5 years ago when I was going through a ton of labwork related to my new POTS issue, vit. D was one of those random tests done. Had never thought of my vit. D levels AT ALL before that. It just so happened I was seeing an endo that was the president of the American Assoc. of Clinical Endocrinologists for that year. So, he was into bone density. When he tested it, it came back in the teens(can't remember exactly). He gave me a few prescription pills to try, but they upset my stomach, along with a couple of other symptoms, so I quit. A couple of years later, new doctor, new test. It is still low, so I get a prescription for the vit. D 50,000 IUs. They look different from the few pills the previous doctor had given me in his office. These were green, just like everyone on the net had said theirs looked like. I still look back and wonder if he gave me a placebo!! Anyway, I reacted to those first "vit. D" pills because I had upped my calcium along with them, and me and calcium have never gotten along!

Anyway, I did learn from the previous doctor that if you are low in vit. D, taking OTC doses just keeps it steady. He said you have to take the huge doses to get the levels up, and THEN take the maintenance doses. I have tolerated the 50,000 IU dose just fine, I think. Last time I took them for a few weeks, I got in a tiredness slump, but that could have been from ANYTHING, as that's how POTS goes.

[sue1234]

I forgot to add, that because I take my vit. D for a month or two, then quit for a few, then start again, my levels are up to the upper 20s now. I do know that I need to get REALLY serious and work to get it up to 50ish or more. So hard to stay on any med!

[issie]

According to Life Extension foundation they want you to have your Vit. D levels at least to 50 to have what they consider optimal levels - they really think that 60 is a better number. So, if you're that low - it could be a major factor in your health. I take around 5,000 to 7,000 a day and I increased mine up to 43 with that dose. That was my last check, so I'm still a little low. It needs to be the D3 form.

[issie]

They are also connecting low vit D levels to diabetes and of course osteoporosis. If you are dark skinned person it is even more important to make sure you are taking enough Vit D - for these reasons and the fact that it helps our pain levels - is another bonus.

[sue1234]

I do need to get my levels up high and see what things, if any, change health-wise. I know it helped the hip pain. And, like Issie said, it should improve my osteopenia. But, I'm still curious to see what ALL it helps.

I am a rare person that doesn't tolerate the D3 form. It really upsets my stomach, which I already have huge issues with. I am forced to take the D2, which, for some reason, for me isn't that bad as it doesn't bother my stomach. In the long run it will still work to bring my levels up.

[sugartwin]

In just six months I've seen a lot of degeneration in my joints. By 'degneration' I mean increased laxity in the joints that were lax to begin with, and problems in joints that previously weren't a problem, like my neck, my wrists and my ankles. In fact, I have a hard time grasping that it's really only been six months! If I weren't keeping close tabs, I wouldn't believe it. I need to ask my OT lady for braces or supports for both wrists now, because they pop, grind and slip. Something they didn't do AT ALL, just six months ago!

When I saw Dr. Francomano last summer, she told me to consider bracing my fingers because of how hypermobile they were. I brushed it off because they didn't bother me. A little over a year later, I'm in OT begging for splints because my knuckles hurt so bad. I can't say what to expect. Everyone seems to be different. My pain has getting worse since a severe illness kicked off the whole downslide for me several years ago. It's rough, because my pain doctors aren't getting any more willing to treat it.

As far as Vitamin D, I agree to keep it higher than recommend: 65, even 70. I'm dark-skinned and African-American, so it's really, really hard for me to stay up on D, even on supplements. I'm beginning to think the supplements and my diet are probably my only sources of D. My dark skin coupled with the long winters and bleary weather in Cleveland probably prevents me from making any cutaneously.

Also, try Zebras For Life on Facebook. It's more heavily moderated, so hucksters and fight-starters get shown the proverbial door.

[issie]

Can you get on Zebras for Life without being on facebook? Not something I've wanted to do. Like the plain ol internet. Tried to look it up that way and couldn't find it.

Issie

[sugartwin]

Issie, unfortunately not. You have to sign up for Facebook to access it. I don't really blame you though.

[sandymbme]

There are some wonderful things to be said for facebook, despite some of the frustrations. It is a great way to keep friends and family updated on whether or not I am in the hospital. I have my account security on highest settings, and you can block anyone you please. I have found some amazing POTSie friends online. I have been able to do my (small) part to raise awareness, participating in online events like "Day of Visibility". So it is not all bad!

I saw my pain doctor the day before yesterday. Sorry for the slow update, after not sleeping for close to a week due to my pain level, I collapsed last night and slept nearly 24 hours uninterrupted. The pain doctor looked at my lumbar and sacral areas, as well as the left hip, and saw massive amounts of inflammation. Will be heading to the ER tomorrow (well, later today, really) to see what is wrong. So validating to know that there was something easily identifiable, though, and that I am not "exaggerating" as I have often been accused in the past. The first thing he said when he turned on the machine was "Good God, no wonder you can hardly walk!" I think most of you can relate to that. Not at all happy that I am injured, but thrilled that it is quantifiable.

I finally woke around 2am, got out of bed and promptly passed out after a day with no meds and no fluids. But have some food and drugs in me, am hooking up to fluids, and will go get checked out in a few hours. So, yay for answers!

Sandy

[Chaos]

Sandy- Let us know what they find out. Glad you got some pain relief and some sleep at least!

[sandymbme]

Fell asleep without getting fluids (like an idiot!) and slept all day. Have to get some fluids and back to bed so I can take care of this tomorrow. The pain is just wiping me out. I can hardly lift my left leg at all, making everything so very hard. It exhausts me, and then I sleep too late to get in ans see anyone, and I don't want to drag my fiance to the ER at four in the morning. So, better luck tomorrow. Fingers crossed!

Sandy