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EDS_ELLEN's Photo EDS_ELLEN Posts: 89
2/25/12 1:03 P

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Topical NSAIDS are said to be safe on the stomach, kidneys, liver, etc... i.e. voltaren gel, and there are some patches, and there is even a newer compound creme that contains several different meds to fight pain... all are prescription, but safer than OTC NSAIDS.

Edited by: EDS_ELLEN at: 2/25/2012 (13:03)
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JODYSPAM's Photo JODYSPAM Posts: 22
2/22/12 12:46 P

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Unfortunately, because I have been taking NSAIDs for over 20 years, damage to my kidneys began showing up. Ordinary painkillers do not have any effect on the inflammation, so they really have not been a relief for me. My wonderful PCP has researched the subject and found a newer NSAID that supposedly doesn't have the problem with the kidney damage, so we are trying that out and will have a test in a few weeks to see how it holds up. I will say that compared to no anti-inflammatories, this is a whole lot better! I hope it works out. :-))

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STPHID89's Photo STPHID89 SparkPoints: (1,719)
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2/13/12 10:23 A

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The thing I hate the most about my HEDS, is that my teeth are like chalk they just fall apart so easily ( my dad has the same problem or did )...

Sometimes the smallest things take up the most room in your heart. -Winnie the Pooh


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EDS_ELLEN's Photo EDS_ELLEN Posts: 89
2/13/12 8:42 A

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Lyrica, Neurontin, and Savella are other meds to consider, just be careful if you go on them that you don't run out or stop quickly because it can really mess with your system.

Trigger point therapy wouldn't hurt your ligaments because they won't be touching them, but accupuncture is another recommended therapy.

I really believe it takes a combination of meds and lifestyle changes, to help ease the EDS pain. Also a lot of prayer and remembering what we have in our lives that we can be grateful for.

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STPHID89's Photo STPHID89 SparkPoints: (1,719)
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2/12/12 10:30 P

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I really need a different kind and idea for medications because the last two I was on I had a bad reaction to. Now I feel like I am in more pain then I was in prior to the medications :(. I think I will ask about Tramadol, I go in on the 16th I can't wait to start to feel better.

I have figured out I cannot have massages, my ligaments start popping like rubber bands, lol!



Sometimes the smallest things take up the most room in your heart. -Winnie the Pooh


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EDS_ELLEN's Photo EDS_ELLEN Posts: 89
2/12/12 8:40 P

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Water workouts are definitely the best for EDSers...I like water pilates if you can find a class. I do the workouts on my own, I just went to one class at the YMCA and learned a few moves. I also do a lot of the stuff that I learned in aqua physical therapy, basic types of exercises such as squats in the water, leg lifts, calf raises, walking, etc.

You are all right that Tylenol doesn't help at all. Ask your doctor about Tramadol, most of the EDSers I know take Tramadol. I take it three times a day (along with a lot of other meds - including meds for POTS and Asthma), and it takes the edge of the pain. I was taking an NSAID called Relafen (Nabumetone) for years until a few days ago, when I decided it doesn't help at all with the pain, and it is destroying my stomach, so I am not going to take it anymore. There is one NSAID that is very helpful, it is in gel form Voltaren Gel, you just rub it into the joint that hurts and it reduces the inflammation in that joint, and thus reduces the pain... it is a wonderful med and doesn't affect the stomach the way other NSAIDs do since it is applied to the skin and doesn't have to go through your whole system.

As for massage, if you do go for it, my geneticist (one of the best EDS doctors in the country - Dr. Francomano in Baltimore, MD) recommends trigger point massage therapy for EDSers... says it works wonders. She had me get a book that shows where the trigger points are so I can do some of it myself, but I find that difficult, if you are in an area where you can find someone proficient in trigger point therapy go for it!

Novocaine wears off for me to, had it wear off during a root canal! OUCH!!

But yes, back to the positive attitude, once you learn to accept your diagnosis, and find ways to cope with it, you can really make a breakthrough and learn to live your life to the fullest, and make the best of your own gifts, even if mobility isn't one of them anymore. :)

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JODYSPAM's Photo JODYSPAM Posts: 22
1/27/12 2:19 P

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You are correct about Tylenol not touching the pain. My case is moderate to high, and my knees were really bad by my late thirties, but my orthopedic surgeon would not let me do anything for 13 more years because I was so young. In 2001 I had both knees totally replaced at the same time (he said I "didn't have a good leg to stand on"), a procedure that was possible mainly BECAUSE of the EDS!! My super flexibility was a plus for once. :-))

I've had those knees checked periodically, and they are in perfect working order--the only things sometimes that DO work. :-))

When you look at all the "side effects" of our strain of the disorder, some things start to make a lot of sense. For instance, many of us (myself included) do not respond to normal doses of anesthetics, pain killers, etc. When I had an emergency C-Section at 29 with my first child (and still undiagnosed), they were ready to proceed when I mentioned that I was feeling what they were doing! They quickly just put me completely under.

When I go to the dentist they always have to use more novocaine, which then means that it is far more annoying as it wears off. I have a very high tolerance of pain (probably because I have lived with it soooooo long and it is non-stop), so that is where the positive attitude and outlook plays a key role.

No matter how depressed you may get at times with EDS (and you can't avoid it), there are chronic conditions that are worse, and even our strain or type is not the worst form, if that's any comfort. :-))

My son's first sign was his "nursemaid's elbow" at the age of three. He'd be playing and suddenly dislocate his elbow. I still hadn't been diagnosed, but this was obviously an indicator that he had the problem once I was. As soon as I was diagnosed, he was, too.

I hope you find a good water exercise program to try. I do not do deep-end stuff because I find it too painful, but the water aerobics that are done in chest-high water seem to work really well for me, and as I keep losing weight I add intensity and endurance to my plan. But I am always careful to not over-extend! I may feel dreadful before I go, but I am always grateful while I'm there.

Oh, another thing that helped me at times: a properly done massage! Not that the lessened pain relief lasted very long afterwards, but I'll tell you. 60 minutes of bliss was HEAVEN! If someone every wants to give you a gift or reward you for your weight loss or something, ask for a massage. As long as you are VERY clear to not let the masseuse overdo it, you'll at least have some idea of what less pain feels like. :-))

Hope this helps, and feel free to bounce things off of me if you ever need to.

Edited by: JODYSPAM at: 1/27/2012 (14:21)
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1/27/12 10:44 A

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Well, I found out my Dad has it and he has known about it since he was 26... His knees had snapped from it at 25 and 26. My dad hasn't been to the doctor since and didn't think to look up what exactly it was. My doctor told me I have extremely bad knees and have to wear a knee brace all the time now. I had to stop taking my meds because of an allergic reaction, now I am waiting for the stuff to get out of my system. My oldest daughter I have noticed signs in her already ( she is 3). My Dad has a mild case and I have a moderate... I am hoping my oldest (or the other 2) don't have to go though what I am going through, It scares me.

It is so nice to have someone respond to me and tell me about there situation. I think I will try the water workouts maybe I could do more without my knees feeling like there are going to snap. I am sorry to hear about your kidney damage, I couldn't take Tylenol it doesn't even touch the pain. I hope they can figure out something soon for you.


Sometimes the smallest things take up the most room in your heart. -Winnie the Pooh


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JODYSPAM's Photo JODYSPAM Posts: 22
1/26/12 5:02 P

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Probably most of us were misdiagnosed early on. Being a hereditary disorder (and whatever type you have, that's the only type you can pass on, as I understand it), you can start to trace it in your family. For me, it was my dad, and unfortunately my son has inherited EDS-hypermobility from me. In my teens I was diagnosed with bilateral chondromalacia of the patella (I.E., crummy kneecaps) and had major surgery on my left knee at 19. The doctor kept trooping medical students into my room to "show-off" how easily he could swish my kneecaps around. I prided myself on my super flexibility and just assumed I was blessed with wonderfully soft, silky skin. :-))

It wasn't until I was in my 40s that the serious prodding, poking, and researching resulted in the EDS-type III (now hypermobility) diagnosis. It was actually a relief to have a label to put on my troubles, since I was having more and more issues, exacerbated by weight gains because of the problems being complicated by severe degenerative osteoarthritis.

What I have found extremely helpful is water aerobics. At your age, you can probably have a pretty intense workout, and by doing it in water, the impact is removed. One word of caution: since we can so very easily over bend/flex/extend, you must be careful not to injure your self with enthusiasm! I did that my first go-round (probably feeling smug about the flexibility) and set myself waaaay back!

One other possible precaution: I have not heard of your drug, but I have been taking NSAID's for over 20 years, and since my blood is tested yearly, we discovered that I am starting to show some signs of kidney damage. I have totally gone off the anti-inflammatory drug. I am relying on Tylenol only, which is not as effective but far better for me.

Main advice: enjoy life, keep a positive attitude, and take care of yourself! :-)

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1/21/12 10:51 P

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Hello! I was just diagnosed with EDS. I am 23 and was diagnosed with RA at 17, It wasn't til I went to the Rheumy for the first time on the 19th I learned even though my test was positive I don't have RA. He then started poking me and seeing how far he could stretch or bend me until it hurt ( never hurt). Did a bunch of Xrays and blood work and stuff (spent all day at his office), and then at the end tells me that He is almost 100% I had EDS also know as Hypermobility Syndrome... I pretty much was confused and kinda lost my hearing so when I got home I looked it up, and realized what I thought everyone could do wasn't normal. I also just found out I have have no grove for my knee cap to sit so it is just floating. I would love to learn more and understand myself better. Oh, and he also prescribed me Salsalate, anyone take that? I hope I to get to know everyone better!

Sometimes the smallest things take up the most room in your heart. -Winnie the Pooh


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