Ehlers-Danlos Syndrome (EDS)??

Hello, all.

I have been having some health issues lately. I have had things all my life, but lately it's been a little out of control. I became very sick over a year ago and lost 50 lbs. At this time, blood was discovered in my stool & dehydration & frequent BMs were constant. During this time, they had thought I had cancer, then IBD (crohn's disease specifically), but now they do not believe that is the case. I am currently being treated as if I have ulcerative colitis, which I don't believe is my problem. It seems all my tests are inconclusive. I had some small uclers in my colon during my first colonscopy, but the second one a few months ago after being on prednisone & alzulfidine for months, was clear. I was then told it was probably a very bad case of infectious colitis that now is just causing IBS. The bleeding came back recently, but seems to have let up a bit.

Anyway, during all this I was searching for the cause of my symptoms, which there are many, not just the GI stuff. I get frequent low grade fevers, and have quite a bit of pain. I am exhausted most of the time & have a really hard time with balance & dizziness. Seems I have low blood pressure as well. Sinus arrhythmia as well. (that's no big deal at all).

I was told by my doctor that I have hypermobility joint syndrome months ago. One day when researching, I came across a medical paper discussing the fact that GI problems go hand & hand with EDS. I began researching EDS & believe this is probably my issue. I then contacted the doctor/professor who wrote one of the papers, and he said I need to talk to another doctor at a teaching hospital nearby. I did that, and was told I should be seen. So I have an appt. in the genetics clinic there next month.

My question is to anyone who has EDS.... how were you diagnosed? Has the diagnosis helped with treatment at all? What problems have you had?

I always thought my "bendiness" was a good thing, but am realizing that is farthest from the truth. I am a 34 year old female, btw. I was born with bilateral congenital hip dislocation/dysplasia, which runs in our family. Our family also has problems with detached retinas & heart/valve problems (there have been quite a few "blue babies" born in our family). I have had some ovarian cysts (bilateral) for which I had laproscopic surgery (& D&C & hysteroscopy – I was having constant heavy bleeding). I also had surgery for fluid in my ear which I had for over a year (ENT thought it was odd there were no polyps that he could find on the nasal endoscopy causing the fluid to not drain & become very thick).

I score a 9/9 on the B score.I have horrible saggy skin with bad stretch marks. You can see the veins through my skin. I am very fair, though.

I had problems in high school with tendonitis in my ankle (I was very active: basketball, track, weight lifting), so I saw a rheumatologist. He made me do all types of bending & told me I was going to have arthritis young. Now I realize it was hypermobility that was the issue. My mom & I were talking about it recently & she said he was very surprised at how "bendy" I was. Almost shocked.

I have been bumping into everything. Seems I have problems with depth perception. I thought this would clear up after my ear surgery, but no luck.

I also began having migraines back in January.

Anyway, that's all I can think of now. Both my pregnancies were normal. I did have heart issues (sinus tachycardia) when I was pregnant with my second child, but was told it was benign & would go away. I am not sure if any of this is associated with EDS or not.

I have had so many tests, but nothing definitive has been found. I am just wondering what I can do & what to expect. Any information is appreciated.

By martzj
Posted August 15, 2008 at 10:03 pm

Hi huckleberrie,

My, your history is almost a carbon copy of mine.....pretty much lifelong and little medical help out there. Sorry to hear you have gone through so much and you are so young....and really sweet to read you have 2 children....they are such a wonderful distraction.

Your doc needs to shut down the colon ulcer bleeding ASAP or you risk shifting into chronic anemia then acute anemia which puts you at risk for heart attack. I've dealt w IBS for many years and it is a tough one to get a handle on because doctors put us on so many different meds for other things that it exacerbates the problem. I finally pretty much starved it out....an experiment I tried because I wasn't able to take even anti-diahhreals because of massive heart attack at 41.

I'm not trying to alarm you, but there is nothing trivial about cardiac arrhythmias. Began having them in my mid 30s and doctors diagnosed fibromyalgia, CFS and EDS (which I did have). As a young women (under 55) you will have to fight for serious cardiac testing, but a simple beta blocker prescription could save you from acute heart issues. Arrhythmias mean there is an electrical issue with your heart sinus rhythm and beta blocker helps regulate that and lower the pressure/work load on your heart. Unfortunately, it will not go away on its own, needs to be treated medically.

I was diagnosed with fibromyalgia/EDS at 32 by a rheumatologist. There is no cure for these at this time but I was able to get the chronic pain to back off with tiny doses of prednisone over time. But the real miracles began when I found my way to water....started w water yoga classes at the YMCA, then found myself drifting into a lap lane and I was hooked! I'm in the pool moving constantly for at least an hour a day....full body water immersion works like a compression suit and forces blood to flow 30 percent better than on dry land/gravity.....Over the span of several months, all the pains began to vanish and so did the IBS.....water work was forcing the organs to work right, pump and push harder....Skin is soft as butter all year round. I pad to the pool deck feeling stiff and climb out of the water feeling deliciously flexible and supple, steadier on my floppy ankles (smile).

Yes, I have always had the floppy ankles (and blue babies in my family too)....my left hip sub-luxes constantly now. Shoulders began sub-luxing painfully in my sleep around 49. I just raced for the pool. It is superb at helping with subluxe pains.....Do lots of underwater dolphining, drag my legs when swimming laps to help the hip and lower back. H20 is amazing stuff!! Because my hip kept popping out and ankles causes me to lose balance so easily, I made sure I have thick padded carpets, rugs and no furniture with sharp edges : ) Plus my mattress is raised higher than normal so I can sort of roll out of bed.....little things like this add up to a much better quality of life.

Like you, I had multiple ovarian cysts that liked to rupture ....isn't that fun??!! NOT! : ) And bleeding/clots/fibroids on top of dealing w dead heart muscle from multiple heart attacks that had been misdiagnosed as 'fibromyalgia events' had thrown me into acute anemia my body couldn't climb out of.... Was happy to get that partial hysterectomy at 49!! Very!! Kept my ovaries in case they offered any cardiac arterial protection and to avoid the risk of sudden onset of menopause. But it was right after this the extreme EDS subluxing began......my signal perimenopause was starting.

Also have a life long history of migraines. Bad ones. Migraines are actually mini-seizure activity....like an electrical brainstorm. Anti-seizure medications are being prescribed for them now. Topomax (anti-seizure) was the first medication that ever worked to hugely take the edge of migraines. I was having them too frequently to take heavy duty pain meds and keep working full time so I just toughed it out for decades....used ice wraps around my head to try to sleep. Topomax, taken as needed (not on a regular basis) in the tinest dose worked so well the migraines are pretty much a thing of the past now.

I hope this helps in some way. We have a lot of issues to wrangle don't we! (smile)

Take good care,
Jaynie

By hukleberrie
Posted August 16, 2008 at 8:14 am

Thanks so much for the reply. It is so reassuring to hear that there is someone out there who understands, & maybe there are some other options for treatment out there. It scares me to think that I will need constant medical care, but I guess I just have to accept it.

I was able to stop this last bout of GI bleeding. It was the worst I have had yet, but it was short lived. I had some trigger point injections done with steroids, and I don't know if that's what did it or not, it cleared up a couple days later. I am tired of it. I have had borderline anemia for a while. I figure it's the bleeding.

What type were you diagnosed with?

I have tried to cut down on all the drugs. They had put me on a beta blocker last year when they noticed the arrhythmia, but I quit them, they kinda made me feel funny. Besides I hate pills. I started on the birth control for the cysts/period problems, and I take lortab for pain & imetrex for migraines as needed & ampytripline at night to sleep better (but I have a hard time waking back up.) I am trying to limit all these meds & I don't like taking anything. I HATED the prednisone & pray they won't stick me back on that crap.

Anyway, I don't have time to post like I want to. I surely will post more later, but got to run the kids around already this morning. It's exhausting.

Hugs,
Heidi

By martzj
Posted August 16, 2008 at 10:00 am

Hey Heidi,

Yes, kids are exhausting (the good kind of tired)! : ) I had 5 stepchildren (ages 2-15) a few months after barely surviving massive heart attack at 41, long commute to very intensive career at a high energy physics lab. I can relate to the 'kid exhaustion'. Lordy, it never stops does it : ) But they made me laugh and I loved them to death.

NSAIDS, pain medications of any kind, aspirin, even vitamins can cause severe GI tract lining erosion. I can't even take a single aspirin....it burns right through the stomach lining and pain will last for a week or more. A male coworker almost died from bleedout from just taking Alieve for 3 weeks. I'm able to take Tylenol OTC luckily, and the rare Topomax several times a year when I just have to head off migraine, but other than that I stick with Prilosec OTC/1 x day, heart meds (beta blocker, statin) and I must have a one Temazapam nightly or I am unable to sleep more than 20 minutes-hour. I get about 6 hours from that sleeping pill, have no side effects and can wake up and function immediately during the night if necessary.

EDS III runs in my mother's side of the family. This is definitely a genetic thing. I swim like a demon and only take .05mg predinisone 5 or 6 days a year....when joint/tendon inflammation ramps up too high to move much. Tylenol for the rest.....I avoid pain meds like the plague because it is important to me to keep my mind alert and GI burning and spasming under control. My mom burst into full blown scleroderma at 55. I am 53 and doing everything I can to stay mobile, slender and in the water where I can force the circulation to 'deep clean and enrich' the entire body, flush the fogginess from my brain for a while (smile).

Beta blockers are the only medication keeping me alive. They slow down the heart pumping action so it can work steadier, not shift in and out of arrhythmias, which can easily turn into heart attack and are an early indicator that the female heart is in distress or moving in that direction. I would advise you to restart the beta blockers immediately. It is the only one you have listed that can save your life Heidi. It is even possible you have already suffered mild heart attacks and that is behind the arrhythmias/heavy fatigue. You need to be cardiac tested. I wish I could say this in a gentler way....but there is just no time to waste when it comes to female cardiac problems. Once your heart suffers a major heart attack and muscle dies, life becomes difficult in ways that can't be described. Please reconsider going back on the beta blocker (Coreg works the best for me....least side effects, no loss of sex drive, less fatigue, $4 at Walmart).

I tried desparately to get help for chest pains, deep fatigue, nausea four years before that massive heart attack and not one doctor sent me to cardiac testing 'because I was female and too young to fit the heart problem profile at 36'. But IT WAS THERE all that time....2 blocked arteries and a heart birth defect. Dead heart muscle from previous attacks was then discovered but it was years too late. I'm hoping you can avoid that Heidi........If you were on birth control pills for a long time, that is a known indicator of coronary blockage. If you smoked + the pill, that quadruples the damage. Check out the WomenHeart cardiac support group on Inspire.....there are new members showing up daily in their late 20s, early 30s and 40s who barely survived heart attacks because the medical system was dismissing their symptoms as not possible because they were females. I'm now 53 and I was drawn to your particular posting because your story is almost a carbon copy of the progression of my symptoms....which were leading straight to serious heart damage. Take the beta blocker at bedtime because heart trouble often starts during the wee hours and it will protect you. If you have been having drenching night sweats, that can also be a sign of nighttime heart arrhythmia. Sure would be fabulous if you could avoid all that!!!! : )

You take good care and I hope you get some moments to rest between all the family stuff,
Jaynie

By hukleberrie
Posted August 16, 2008 at 11:18 am

Well, all the doctors are telling me no big deal about the arrhythmia. Benign. They put me on the beta blockers because I was having high blood pressure (it's been low for months now except the other day – I think it gets high because of pain). I figured that's why I am having the arrhythmia as well. I don't smoke, never have, and wasn't on the pill until these period problems creeped up on me this year. I think of it as a miracle drug, really, I hadn't realized how badly my period was until I got on the pill. (My husband had a vesectomy after our second child, I was 21. I did the depo shot for maybe a year or two in between my children, but I got horrible knee pain with it. I have noticed the knee pain for a week during the pills as well, but I will live with it. I was told it was fluid in my knee with the depo shot.) I am truly hoping this is just an odd arrhythmia that is caused by the pain & stress on my body (like they told me when I was pregnant for my second child 12 years ago - of course they told me it would go away as well, and I am still having problems.)

So, I guess, what do you think I should have done, testing wise, for the heart? I did have the holter monitor back when I was pregnant 12 years ago, and I also had an ultrasound on my heart, but was told all was okay, benign, due to stress of the baby. I have had a couple ECGs lately, but that's it. Wouldn't they have found an abnormality then?

BTW, I am not allowed to take NSAIDs due to the GI bleeding. No ibuprofen anymore. I still get the bleeding though.

I have had some night sweats, not drenching though, but I figured that has something to do with my low grade fevers or something....

Now I am worried & curious about what I need to do. I am finding that I have to be very proactive about my care. I am hoping that I might get a little better care with the EDS diagnosis. I need to know my type & try to figure this all out. My doctor said the EDS dx would not change my treatment, but I think I might learn more & it may provide some insight as to these other issues & what I can do & what I can expect. I just feel like there has to be something else I can do. I have been having so much pain & I need to "fix" it. I am discovering that this isn't going to be "fixed" so I had better learn how to live with it. I just want to make sure it's a good life I am living, not suffering. That's what I feel like now, like I am just suffering.....

By martzj
Posted August 16, 2008 at 1:35 pm

Heidi,

"So, I guess, what do you think I should have done, testing wise, for the heart? I did have the holter monitor back when I was pregnant 12 years ago, and I also had an ultrasound on my heart, but was told all was okay, benign, due to stress of the baby. I have had a couple ECGs lately, but that's it. Wouldn't they have found an abnormality then?"

Not necessarily. ECGs are notorious for false negatives on female heart testing. Then in the cath lab, the culprits (blocked coronary arteries) show up loud and clear. Ideally, you want to get blocked arteries opened and stented (tiny wire mesh scaffolding) to ward off heart damage. This can be done in a cath lab and is non-invasive. Echocardiograms only show the large pumping and blood propulsion movements of the heart muscles and how well the valves are closing/opening. Echos cannot detect blockage on the outer walls of the heart.

http://www.webmd.com/heart-disease/features/her-guide-to-a-heart-attack

http://www.bmj.com/cgi/content/full/311/7021/1660

"BTW, I am not allowed to take NSAIDs due to the GI bleeding. No ibuprofen anymore. I still get the bleeding though."

It is not acceptable that your doctor hasn't gotten this under control yet unless it is caused by the need to continue taking pain medications. Then you are at an impasse, I'm afraid, unless there are other ways to get the pain to back off.

I have had some night sweats, not drenching though, but I figured that has something to do with my low grade fevers or something....

Low grade fever, night sweats.....chronic inflammation somewhere, possibly systemic in nature, definitely affecting blood vessels. You could be my twin Heidi....this is amazing and worrysome.

"Now I am worried & curious about what I need to do. I am finding that I have to be very proactive about my care. I am hoping that I might get a little better care with the EDS diagnosis. I need to know my type & try to figure this all out"

You are absolutely right about the need to stay as vigilant and proactive as you can manage....I understand the deep energy drops and heavy fatigue that can create feelings of overwhelm. Happily, we have the web now and can search away....I take it in small doses and then go off, do other things while my mind mulls it over. If possible, it is a huge help to start getting copies of your medical records, and all tests. Some hospitals now allow patients to use a password to access all their own records 24/7 on-line!

I am not a doctor Heidi....just passing on a little of my own experience. There is little that can be done by doctors for EDS at this time....there is an enormous amount of preventative medicine that can help ward off heart attacks and other cardiac issues. In your shoes, I would consider daily beta blocker non-debatable from this point on. It is hugely beneficial to women...so many don't get it until after a heart attack. None of the tests you have had so far are accurate for locating arterial blockage.

My heart goes out to you. I have been where you are. Will be keeping fingers crossed that you find ways to get the pain to ease up, back off.....maybe even disappear completely (that never happened for me until I got into water and worked my limbs, flipped feet around like a mermaid : )

You take care,
Jaynie

By carrieschiariconnect
Posted August 18, 2008 at 10:07 pm

Hey, I just wondered if you have ever had an MRI of your cervical region and your brain? I have Chiari 1 Malformation and you have a lot of the symptoms and also a lot of people who have Chiari also have EDS...I could be way off but I have a strong feeling that I am not far off. I would bet money..let me know what you find out please.
My email is carriebear31@msn.com

By hukleberrie
Posted August 18, 2008 at 10:39 pm

Thanks so much for your reply to my post.

No, I have not had an MRI of my c-spine, only MRI of abdomen & pelvic area. I have ran across Chiari, but hadn't looked into it too much. I will take a look now.

I did got a call today from U of M, they had a cancellation & they had put me on the top of the list, so I go in Thursday! I am so nervous. I hope I have all the info they needed.

By dsweeney
Posted August 19, 2008 at 12:38 am

I would definately follow up with an MRI as well for I too have Chiari One Malformation as well as Tethered Cord Syndrome and alot of the symptoms your are talking about were misdiagnosed for me for over 7 years. Make sure your MRI is from your brain all the way down to the bottom of your spine.

Carrieschiariconnect is correct when she stated that Chiari is also often connected with EDS.

Dawn
Florida

By hukleberrie
Posted August 19, 2008 at 6:15 am

I did have a lumbar MRI back in 2001. It would have shown something like the tethered cord, I am sure....

I had a CT of the brain back in January. Would that have shown Chiari?

By carrieschiariconnect
Posted August 19, 2008 at 6:49 am

I would get an MRI because although CT scans are good they don't always show Chiari....I would definately get the MRI if you can and also a CINE study...which they do during the MRI of the brain. If you ask about it the doc will know exactly what your talking about.
Best of luck,
Carrieschiariconnection.com

By hukleberrie
Posted August 19, 2008 at 9:34 pm

I will see what they say at the genetics clinic on Thursday. I hope I get some answers (and not too many more tests... I am tired of tests..... and out of money, lol!)

By hukleberrie
Posted August 21, 2008 at 7:48 pm

Just wanted to let you all know I got my dx today for EDS III. Said I could be tested for the vascular type, but don't think I have it. Said there may be that I have other rare forms as well....

I am hoping I can get good treatment. I was referred to someone who specializes in Spine Pain & is versed in EDS. When I discussed my PT with them, they said that I was not treated correctly because I need different treatment than most people, no stretching. Stretching is bad for us. No more yoga either. I am slightly bummed, but will live. I just need to find a way to make this better. I need to build muscle. I am so scared to exercise cuz of the dizziness from the orthostatic hypotension. It kinda freaks me out when everything goes black.

They were all so very nice to me. They decided to do an echocardiogram today as well. I am really tired from the trip. I will post more later. Just wanted to let you all know....

By James_12345
Posted August 22, 2008 at 2:09 pm

Ehlers-Danlos National Foundation

http://www.ednf.org/

Chiari Institute (has some fabulous online videos about the disorder)

http://www.chiariinstitute.com/

By hukleberrie
Posted August 22, 2008 at 3:20 pm

I have been to the ednf site. Think I am going to join now that I know for sure....

Do you all think I need to pursue this Chiari 1 thing? Is that the cause of the headaches? They have been non-stop this week....

By hukleberrie
Posted August 23, 2008 at 10:58 pm

I thought I would post more about how my genetics appt. went. It was a long appt - 2 hours! They did a lot of checking me out, almost under a microscope it felt. I am sure that is good - being thorough. The one doctor really looked at my eyes for a long time. It really burned after a while. I didn't particularly like that at all. They noticed all my little bruises (some I didn't realize I had) & really my bruising wasn't that bad right now. They asked a lot of questions about my families history. I think with the records I sent & I also wrote out a little compact history of my life, they didn't need to get into that. They found the hooked roots of my teeth interesting. I never thought that could be part of the EDS....

I am curious on which side of my family this has come from. Both sides have some traits... Both sides are hypermobile & one side has valve problems, detached retinas, congenital hip dislocation while the other has periodontal problems, skin issues, hooked teeth roots, scoliosis & miscarriages. Maybe someday I will figure out which side has cursed me so.

I am waiting to receive my letter from the U of M about the diagnosis. I am curios what it will say. I have received a referral to another doctor who will help with what exercises I can do, since I have been doing yoga for a while & yoga & stretching is a no-no with EDS. I am not doing well with the dizziness though (orhto hypo), and too much exertion causes so much dizziness & balance problems, I am just so nervous about it. But the doctor said to do simple leg lifts & such. The thing is, most of my problems are hip problems & thoracic & neck problems, so I don't know really what type of exercises I can do for that. I guess I will just have to learn.

At the genetic appt., there was a few things I didn't even realize I had going on. One of these was the fact that the whites of my eyes have a light blue tinge. (huh?) My mom said she had noticed it more when I was a kid, and I had no idea. I hadn't noticed it in the EDS stuff I had looked at, although I did notice it somewhere online AFTER the appt. They also discussed my fingers getting blue & that my swelling of my hands could relate to the EDS. I was also told that I had a high palette. Didn't know that either. Something about a mild dip in my sternum or chest bone as well. That really surprised me. And I guess my lower back curls to the front & the mid back has the curve to the right. (the PT had told me I had mild scoliosis to the right last year, so I thought that might be so. I did learn the PT I had before was all wrong for me.)

Does anyone have more information about this "pooling" of the blood that can cause the orthostatic hypotension? I just need to get rid of this & the balance thing & just need to figure out what to do about it. I know the doctor told me that in people with EDS that the blood pools for some reason. I would love someone to explain that too me a little bit more. I haven't seen much on this online....

Anyway, I feel like I am on the right path. I am just kinda bummed because although I was starting to realize it wouldn't go away, I am now sure I have to learn to live with this. I can deal with the low back pain, but these other things, like the rib pain & migraines & dizziness & bleeding problems are a bit more difficult to deal with.

It is what it is.

By SaraSTR
Posted September 18, 2008 at 7:38 pm

Hi :) I just joined today after coming across your posts during a goodle search about EDS. I was diagnosed with EDS last week during a Rheumatology appt at Stanford in California. He was pretty clueless about the disorder , said that he wasn't familiar with any experts in our area and even left for a bit to try to google some info for me. He seemed to think I should see someone about genetics but didn't know where to send me. There is one doctor at Stanford who lists Connective Tissue Disease under his specialties but he won't be back from a sebatical until November so I will see him then. Perhaps he'll know where to send me or where to start.

Your case is interesting to read about. I have had a similar course as you have, but I was also diagnosed with Multiple Sclerosis in 1997. What led to the EDS is my joint problems were worsening, a lot of tendon and ligament issues, and none of that can be attributed to MS. I've been having this horrendous shoulder pain, it feels like my arms are trying to rip away from my body with each shoulder movement, it's like I can feel something tearing. I had a spontaneous ankle tendon rupture and the sports injury surgeon had never seen anything like it, said it was "split into 4 sections that looked like 4 strands of a mop". Also, during an abdominal surgery, I was told my tissue was "friable", which is like it was brittle or dissolving, said it was very difficult to suture together.

Like you, I've had a lot of female problems. I'm 45 now, but had hormonal and ovarian cyst issues all through my twenties. I also had Hashimoto's Thyroiditis, a common type of hypothyroidism but it was diagnosed early at age 21. By age 29 I had one ovary removed, and the next year at age 30 I had a total hysterectomy and the other ovary removed. I then had periodic adhesion surgeries, which they hated to treat with more surgery since it can just cause more scarring/adhesions, but mine seemed to grow fast and would cause constricting of the intestines. I had an omentumectomy (the protective layer over the abdominal/pelvic organs removed) due to it being completely adhered to the face of my organs so they had to take it out in pieces.

Over the years since childhood, I had miscellaneous joint problems, they tended to hyperextend easily. I can't count how many times I jammed my fingers in sports and when I was a tennis player my knees would frequently have problems like knee cap slipping to the side, etc. I had 3 knee surgeries by the time I was 19 and I was told at age 12 (first knee surgery) that I had "early degeneration of the joints". My knees tend to easily go backwards which is painful.

I've always been limber, and just attributed it to my early years of fitness. My joint hypermobility seems to be mild compared to some stories out there. I've always been able to do funny tricks with my thumbs. But my daughter, who is almost 21, can do some crazy tricks with her arms around her upper body. She also experienced a dislocated elbow at age 2 and has had severe migraines since age 4 and she had to have brain surgery at age 17 for a "cavernous angioma" which was a conglomeration of blood vessels that began to bleed.

I'm confused about the types of EDS since I was just diagnosed with "some type of EDS variant". I've read how strictly one type is passed on through families and yet there are some like me who seem to have a combination of types, so that's very confusing. My mother passed away 6 years ago after a routine heart valve repair. She went into respiratory failure and they were never able to explain why her lungs filled with blood. She had a very serious case of varicose veins of the legs by age 16 and I read that it can happen in the vascular type of EDS. She had purple legs, I had never seen anything like it and I'm a Registered Nurse. She was diagnosed with Sjogren's Syndrome but never had an EDS diagnosis, however I'm convinced that she had a type of EDS and it could explain some of what contributed to her death.

My sister has miscellaneous symptoms like I do but mine are more severe. We've both had severe battles with plantar fasciitis over the years but mine has caused large nodules to develop on the planter fascia that are visible on the bottom of my foot. One orthopedist told me they were actually scars, lumps of scar tissue, from my plantar ligament "tearing". A foot doctor told me it was Planter Fibrosis or Fibromatosis. Neither of them mentioned EDS but that was at least a year ago. I've since developed growing nodules in the palms of my hands that have cords running from them causing mild constriction of the fingers (pulling downward). My toes pull now too.

I've been treated for severe pain for about 5 years now and it was mainly blamed on MS all this time but I always felt like something would come up someday to help give me and answer and add up all the piles of symptoms I've had over the years. The MS was diagnosed after a time of vertigo and numb patches here and there, shaking eyes (nystagmus), and a positive spinal tap for Oligoclonal Bands being present. That is the tissue that sloughs off of the myelin fibers in the nervous system as it is being attacked. I also had numerous lesions present in my brain , cervical cord, and thoracic cord. I have not been able to tolerate any of the MS interferon treatments so I'm not on anything right now except for symptomatic meds.

I recently went to a STanford Neurologist who questioned my MS diagnosis and that is what eventually led to my meeting a Rheumatologist. I had seen a local worthless Rheumy quite awhile ago who didn't even examine me and just tossed me aside and blamed everything on MS , even though I knew that most of my symptoms that were causing increased disability could not be blamed on MS since it primarily attacks the Central Nervous System.

I do not have a chiari malformation and have had numerous MRI's due to monitoring of the MS, but that was an interesting thing to read from some other posters. I have frequent muscle spasms, bulging discs in all 3 spinal segments, a lot of back and neck pain, severe foot, leg, and arm pain. I've been on a fentanyl (Duragesic) patch for a few years due to not being able to take oral pain meds. No doctor has been willing to put me on oral steroids but I have noticed a significant improvement in symptoms when I've been treated with large doses of IV steroids for the MS here and there. Even so, no one wants to put me on long term steroids since it can contribute to other problems.

I was recently put on very high doses of vitamin D after a blood test showed severe deficiency, and I also take weekly shots of Vitamin B 12. I get fatigued really easily. A lot of my symptoms are gray between the MS and the EDS, and I have fibromyalgia type symptoms but those can be gray with MS symptoms too. However, the main symptoms that are causing me to be off work right now appear to be more closely related to the EDS due to it being predominantly joint, tendon, ligament issues.

I'm going to regret typing this much as my hands, elbows, and shoulders are starting to scream at me. But I just couldn't help it since I was excited to come across your post.

I'd like to know who you saw for your genetics and where you got diagnosed. I was told by the Stanford Rheumy that it would be a waste of time to try to figure out what type I have since there isn't any benefit for finding treatment since there is nothing they can do. But because of my children and my sister's young son I would like to know more about it so they will have a better medical history to go by than I have had over the years. I've been told by family and friends that I should be on Mystery Diagnosis lol. It's been quite a long ride to this point. I only wish there were more I could do to feel better. I feel like I'm too young to give up on life and I'm not struggling financially due to not being able to work. It's not how anyone dreams their life will end up , that's for sure, and I'm not ready to give up.

I wish you well, thanks for your posts, I'm glad I came across it!
Sara

By scgirl76
Posted September 23, 2008 at 12:00 pm

I just happen to come accross these posts due to my dad's disease (unrelated). I couldn't believe what I was reading! Every detail of my life seemed to be right here...although I am almost 32 and have had 2 hip surgeries, a shuolder surgery, chronic joint pain,migraines from as far back as I can remember, tubal pregnancy, preemie baby, premature labor with another, 3 miscarriages, an endometrial ablation, my gi problems go on and on...and my joints and skin are quite stretchy! I wonder though...If I bring this up to my doctor...I have no family history to go by because I was adopted. Also, which doctor do I ask?

By hukleberrie
Posted September 23, 2008 at 12:30 pm

For so long I have wondered why this is happening to me. I thought I was going crazy. But now I see that maybe, somehow, my pain & difficulties might help shed light for others! I am so glad to hear that. It helps me feel useful in this mess somehow.

I am so sorry to hear of your health problems. I got a little desperate & emailed a doctor (Peter Byers) who had been involved in an article about GI problems & EDS. He directed me to a genetic doctor who was familiar with EDS in my area. Maybe he can direct you as well. Otherwise, try searching for genetics counselors/clinics and EDS & see if you can find any information. Also, I joined EDNF, and it was very reasonable. They have a wealth of information, including lists of doctors familiar with EDS, on their website.

Although I have my dx, I still am struggling to figure out what is going on with my body. The dx explained a lot, but did not help me much with treatment, because there really is no treatment for EDS. At least I know I am not crazy, though! Plus, I have been referred to a doctor who specializes in spine problems & EDS, so I am hopeful for relief in the future.

If you do not want to search for doctors, I would just relay this information to your family doctor or a rheumatologist, if you see one. It's important to know if you have EDS, before any surgeries, and also to keep an eye out for aneurisms & things like that.

Knowledge is power. Gather up as much as you can.

Hugs,
Heidi

By scgirl76
Posted September 23, 2008 at 2:41 pm

Thanks Heidi- I've been wondering for years what on earth is wrong with my body...maybe it is just what it is...but this is all just so familiar. I appreciate you passing on the info. you have. I'll definitely check out the website...hopefully can find a doctor close to me. ttys.- hugs back to you from sc- Andrea

By hukleberrie
Posted September 23, 2008 at 3:08 pm

I hope you find the answers you are looking for. If you think you have EDS, you probably do. Don't just take it that your body is this way & that's the way it is. We can learn & gather strength from each other.

Pop by every once in a while & let me know how you are doing.

Feel free to PM me or send me an email (khjones@ejourney.com).

Take care,
Heidi

22 replies

Add to the discussion

Search

Join

Connect

You