Joint Hypermobility Issues

[Jennij]

Hi all. I'm glad to be here after having looked at the forums for a long time and finding lots of very helpful information!

I have a question about getting help for joint pain and hypermobility. Every rheumatologist I've been to has just prescribed meds for autoimmune disorders and everytime I've tried PT my POTS symptoms have been triggered full force and I just end up feeling worse. How have those of you with joint/ connective tissue issues (i..e. Ehlers-Danlos) been diagnosed/treated?

Hoping for some answers and relief.

[issie]

I saw a rheumatologist and that's where I got my diagnosis. It was also confirmed by a doctor that specilizes in veins and neuro doc. Since it's the EDS 3 form, I didn't bother to do genetic testing because for that type - it can't be checked with genetics. It wasn't thought that I had the other kinds - although, they aren't completely positive about that. But, genetic testing is very expensive and I don't have kids and won't be passing it on - nor is there a whole lot that can be done about it any way.

I've found the Vit C is really helpful, as it works on collegan and helps the veins. For pain, I use a muscle relxr and a pain med - (Bentyl and Tramadol). These two things help with my POTS issues too. The main thing is trying to keep inflammation down and not hyperextending your joints. We tend to get early arthritis and anything you can do to prevent this will be good. It's hard to deal with and there is a lot of pain with it. But, no way to cure it. We have to exercise - otherwise, we will just fall down in a heap. Our muscles are what will protect our joints and hold us together. It is hard and it does create pain for us - because, we tend to contract our muscles all the time to hold ourselves upright - as it is. So, there is a lot of muscle fatigue. That's why I take the muscle relxr and pain med - at night to get out of pain enough to be able to sleep. It is just a masker - doesn't fix anything. That's where working on inflammation comes into play. I think a lot of issues could be helped with that.

Issie

[hholmes13]

Thanks for the input issie. I was wondering about the same thing Jennij. I just got diagnosed with EDS-type 3 and have been trying to find something that works. I was diagnosed by a medical geneticist. Like issie I didn't do any genetic testing because I don't have any signs of the other forms. I am planning on asking to see a rheumatologist to help with the pain I've been in. It has gotten so horrible over the past few months. I've maxed out my dose of Aleve and it takes the edge off for a few hours and then does nothing. I shuffle around like a 90 year old! I'm looking forward to starting PT but am concerned at how I'll feel. I keep trying exercise and it always seems to make the POTS so much worse. I am going to go out of work for awhile because I want to try and get all of this stuff at a manageable level again.

[roxie]

My POTS specialist picked up on my hypermobility & sent me to a geneticist. I also didn't have genetic testing because I don't have signs of type 4.

Vitamin c is good. Grapeseed oil was also mentioned to me recently and am going to try that soon!

The geneticist told me to learn as much as I can about my joints, how to protect them, and DO IT. 

So that's what I've been doing.  EDNF.org. Has a lot of info as well as their forum.

I got a book by Dr Brad Tinkle about hypermobility and that's been really insightful. It talks about all the body systems, how they can be affected, and what can be done for them. I highly recommend the book "joint hypermobility handbook"

My dr said never underestimate the power of the R.I.C.E. Protocol

Rest, Ice, Compress, elevate. 

I'm also working with an exercise physiologist that is knowledgeable in PotS and EDS.   There's are hard to find. Physical therapy and exercise are super important for us but they are different for us that normal people. EDNF may be able to point you in a better direction for a pt in your area. 

[issie]

Aleve I believe does help with inflamation - isn't it an NSAID? Things like Advil help too - but, Advill will increase your blood pressure. That's good if yours is too low. With either of them - you have to really be careful and watch your liver. I messed mine up when I was younger with a prescription med that is equvilant to Aleve - but an RX. I have been working on it every since. Some people do well on aspirin. There are some herbal things that work on inflammation too. Lots of things that can be tried. But, you don't know which will work best for you unless you try them.

Bananas, I use grape seed extract and mine has bilberry and green tea in it. I get one by Spring Valley from Wal-mart. It will help with your vein function - but tends to be a vasodilator - so you need to know if you need to vasodilate or vasoconstrict.

Issie

[roxie]

I'll check with my pots doc to be sure. But since he's pushing Midodrine I'm guessing its a no-go for grapeseed

[issie]

I'll check with my pots doc to be sure. But since he's pushing Midodrine I'm guessing its a no-go for grapeseed

Yeah, you'd be playing tug of war.

Issie

[hholmes13]

Yeah it is an NSAID. I've been worried about taking it for too long because of what it can do it to your liver, etc. I got on the forum for EDNF and there's some great info there. I'm hoping the PT person I get paired with is knowledgeable about POTS and EDS. I have a consult with the doctor soon. I ordered Dr. Tinkle's book a week or two ago and am just waiting for it to get shipped. I'm trying to learn all I can about joint health so I can take care of them as long as possible. I've read a lot that we should have our vitamin D levels checked. Is that worthwhile? I live in Minnesota and am extremely heat intolerant. I know I don't get enough from the sun. I'm also taking a multivitamin but I want to make sure I'm doing all I can. Thanks for all the info!!

[issie]

Yeah, it seems we tend to be low in vitamin D levels and if you are low it can cause muscle pains and weakness. I find that Vitamin C is very helpful - but, some don't do well with the citrus version and have to go with an allergy C form. I'm doing some other herbals for inflammation too. Some do really well on Tumeric and it helps with pain. The other two things for inflammation I use is Boswellia and Astaxanthin. I'm a member of Life Extension and can call and talk to their doctors and get suggestions- these are the two things they say cause little to no issues and can be used instead of NSAIDS and work as good/maybe better. I'm not using Advil or any of those things. Sometimes, I use aspirin. I have high bp's and advil will increase your bp - so not using that very often. Life Extensiion does however, in their magazines say that Advil is a good anti-inflammatory and works on other things too. And like I said - I don't do the aleve or things in that family - because of what I did to myself years ago with my liver. When these things maybe doesn't take you out of enough pain - then the things I listed above are the next choices with least side effects - although they can be addictive and need to be cycled or they will stop working. I choose to use the lowest of everything - so go off every few weeks for a few days and then start back. It's really bad those days - but, I don't want to use more or become addicted and want it to keep working. This is what is working for me. I also try to do some sort of exercise daily. I'm trying to increase the segments - not so much length or intensity at this point. My goal is to get to at least 30 min. a day - if I have to break it down into 5 minute increments. I do the eliptical because it won't jar our joints or be too pounding for us. It also has a smoother movement - things like the stairmaster and upright bike hurts my knees - because my knee-caps dislocate and will come off my knee and I'll have to put it back in and then issues start with my knees. There is a strap you can use under your knee caps to keep this from happening. But, I just try to keep the muscles strong around my knee so it will hold itself in place. I'm always getting ribs out and my jaw out - I've learned how to put things back into place myself. So, this is just some of the things that you may have to deal with EDS - but, you can learn how to manage it and what you can and can not do.

Issie

[SeattlePotsy]

I have had prolotherapy (basically a series of injections that scares up the ligaments and therefore makes them tighter) in my ankle and SI joint and it has done wonders! I have also done a lot of PT but I wasnt able to run for about 3 years and now I can (and in my less discomfort!) thanks to prolotherapy!

[issie]

Ive got a friend that has done that in her back. She has to do it occasionally - repeats. But, it worked well for her too. I used to have to worry about my ankles - but, I've broken both of them really bad and the scar tissue formed on it's own due to the breaks - so probably won't be turning them over again. Let's hope not - any way. One is held together with plates and screws - so - doc said I'll never break that part again - the break will be above the plate - so almost to the calf. Hoping I'm done with breaking things. But, with EDS you never know. I've also broken my back. All these things we have to deal with due to EDS and osteopenia and the arthritis that sets up because of it all. You younger ones - I'm glad you are finding out early in life that this is an issue - I didn't know what the problem was until I was in my late 40's. I could have done so much more - if I'd known.

Issie