Finally...a Diagnosis!

I'm 53 years old now. All these years fighting with Dr's & being diagnosed with Fibromyalgia, simple Arthritis etc. I've been accused of being a drug seeker, a hypocondriac, bipolar, depressed, should I say more??? From age 48 yrs till now, I have progressively gotten worse in regards to pain. It took all 53 yrs to have xrays, MRI's etc to show signs that I wasn't imagining my pain. All was going well till August of last year. I was using a cane, I was able to carry on with daily chores, I accepted my fate with having a disability. Then my hip began to cause me many issues of pain & stiffness. I had x rays done, I hooked up with a good rheumatologist, he sent me to a Genecist in Dec of last yr. He noticed my weight loss, my transparent skin, loose skin on my upper arms, my deformed elbows. It explained my many injuries over the years, the scolosis in my early yrs, all the injuries without even trying. Now @ 53 I have Severe Degenerative Disc Disease, Severe Osteo Arthritis in my back, pelvis, rt hip, left hip, both shoulders, left knee, left foot etc. I have fought for a right hip replacement with an orthopedic surgeon who said lose weight ( did that) I will do your hip replacement. Last time I saw him in Dec of last year, he said once again, its your back! Get your back fixed first them I will do A Hip replacement. I was so aggravated cus I had lost 100 lbs with promise to have the hip replacement & the surgeon was making excuses as to why he wouldn't do it!!! Understand my frustration level ppl! I was diagnosed with Type 3 in Dec...What a relief that was. So... I was referred to a new Ortopedic surgeon & saw him this week, Wed July 16. He went over my files & said that I absolutely need a hip replacement & its not a simple replacement. My pelvis from the arthritis has become deformed. I'm here living in a small town with not a huge selection of Specialists. I Thank God that someone actually is listening to me, however there is a 4-6mth waiting list for this surgeon to preform my hip replacement ! I have no Dr to prescribe pain medications so I suffer. There are strict guidelines here in Canada in regards to pain medications. It really sucks cus many Drs are afraid to prescribe pain meds.

I don't have dislocations, I just injure myself really easily all my life. I have poor wound healing, many scars that are wide. I have diviticulitis, stomach issues, no heart problems.

I am thankful that I finally have a proper diagnosis. However, it changes nothing. Not everyone believes I have this cus on the outside they see nothing. All they hear is bitch & moan. Then they ignore me or are stumped @ what to say to me.

Anyhow, what am I to expect for my future? Am I correct in how I feel right now? Is there anyone out there going through the same as myself???

Please let me know how Ehlers Danlos 3 has affected your life...

Thanks for listening!

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Hi KitKat,

I'm afraid every EDSer's journey is unique, so there is no way to know your future. Some with EDS stiffen up some and enjoy later years with less joint instability for the first time in their lives. Others with EDS do not stiffen up and continue having lots of pain and/or joint insability/subluxations/dislocations. And still others notice no worsening or improvement.

The good news is that according to Dr. McFarland, an orthopedic surgeon who spoke at last year's conference, EDSers generally do not have success with soft tissue surgeries (tightenings, tendon repairs, etc.), but we are quite successful with hard tissue surgeries (total joint replacement, fractures).

As for the pain, there are many medicinal and non-medicinal options. I love my TENS unit...I bought it for relatively little from Amazon.com. That's where I also bought Biofreeze which helps. Ice and heating pads work well as do warm soaks with Epsom salts. You may find some additional ideas from Mark's marvelous article: http://www.ednf.org/documents/Pain_and_Managing_Pain_2012S.pdf

I hope all goes well!

Gentle hugs...

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Hi Kitkat48, congratulations on finally finally getting the diagnosis. what a relief to finally be able to understand what the heck has been going on your whole life, right? I am 62 yrs old and one year ago finally got my official diagnosis of EDS, classical type. Sounds like the course my EDS has followed is rather similar to yours, at least in the back area. My greatest problem area is my back, which started as some spontaneous disk herniations when I was in my 30's and gradually went downhill from there. With each decade that passed from there, I developed EDS related problems affecting other body systems as well. (major g.i. problems, rectal prolapse and colonic inertia finally resulting in permanent colostomy, and lots of other stuff I won't take the tim to go into since you already know the drill!)
And oh, yes, the invisibility of EDS! I frequently have people tell me that I look like I have nothing in the world wrong with me physically! I think it is the total body flexibility that fools people the most...the older we get, the more such obvious flexibility seems to be mistaken for "good health". I think because we are so used to seeing people become slower and stiffer with age. But not EDS'ers...well, I may be slow depending on what various joints are doing at any given time.

I know that each of us with EDS has a unique presentation, but with lots of simlarities to each other as well. When I look at my age compared to yours and think of what is different now from 10 yrs ago, I would say that there is one particularly good difference: my chronic pain is much improved over what it was -- due to an excellent physiatrist/pain specialist who was the first doctor to try an opiate, namely the fentanyl patch for my pain...turns out this is an excellent choice for me. The many medications I was given before that as "alternatives to opiates" all gave me lots of side effects and didn't help my pain much at all. i have been on this patch for 9 years now, and that plus finally stopping work and applying for disability are I believe what has allowed me to reach a lower and more tolerable daily pain level...I still can't work, which has been one of the greatest losses in my life, but the quality of my life is so much better now. I still have loads of pain, but instead of it being at an 8 out of 10 level most of the time, it is now more likely to be at a 5-6 level most of the time now. Which means I can think about a lot of things other than my awful pain throughout the day! This is wonderful to me.
On the less positive side, over the last 10 years, my chronic fatigue symptoms (common in EDS pts) have increased, and I also in the last 5 years have been gradually developing some as yet minor symptoms of dysautonomia. However, these are not nearly as distressing to me as the high pain levels always were.
I do believe that if you continue to persist in your search for the best treatment for your hip, you will eventually succeed and I think you have good reason to expect to feel much better and have SO much less pain.
Oh..one other thing...as I said, my lumbar and cervical spine are in terrible shape, with severe djd and multiple levels with stenosis of varying degrees... I also developed a supposedly rare condition (spinal arachnoiditis) which causes severe and intractable pain of its own--this condition has not been linked to EDS by the way, but tends to be seen in people with longstanding back problems including spinal stenosis)--I think in my case, the arachnoiditis was my body's reaction to a laminectomy I had in 2001. So with a back and neck this bad, I had every reason to expect the deterioration to continue and just to keep going down and down...but for whatever happy reason, I seem to have (dare I say it)stabilized in terms of my back and neck issues at this point!!
By the way, are you aware of the recommendation that people with classical and HEDS have regular echocardiograms to evaluate the aorta? I think the routine recommendation if you have no current problem is to have one every 5 yrs, but my cardiologist prefers I have one every 2 years. I don't believe it is necessarily 'common" for folks with EDS to develop problems with the aorta, but it is recommended that we have the monitoring to make sure. I just tried to find an article stating the specific recommendations about echocardiograms, but only found ones saying to have an echo at the time of initial diagnosis and mentioning the possiblity of aortic root enlargement.

But while looking for more info, I did find an EDS article I hadn't seen before which I just decided is my new FAVORITE EDS ARTICLE, because of how clear it is and how very inclusive it is of important info...it is a very long article, but thought you might like to save a copy for your records...

here is the link:

http://www.ncbi.nlm.nih.gov/books/NBK1279/?report=printable

LorrieL

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I am 49 years old and have been through what you are talking about. I still don't have a diagnosis. I am frustrated and angry. I accept that I have a disability, but the hardest part is being treated so badly by doctors. I am not going to quit fighting, though.

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Same as you, multi level lumbar fusion surgery, spinal cord decompression surgery (lamnioplasties with fusion) - cervical spine, then another 2 surgeries, multi level cervical fusions...before all those a laminectomy of lumbar spine, bunionectomies both feet, left hip pops out without me showing someone what my hip does...used to beo so limber, but am tighteneing up...used to dance, but too afraid of dislocation of shoulders, ankles, toes, hip, knee....muscle spasms...got into an accident because foot left the brake when leg spasmed and hit the gas....but I thank God for a great orthopedic surgeon for the spine..I fought it alot but now 3 x a day flexeril muscle relaxer is mandatory, anti-inflammatory sometimes, so they will continue working and pain medication when neck/shoulder pain is really bad. What I finally found out is that I do not have neck pain or fibromyalgia (diagnosed same as you) but that it was coming from my shoulders sublaxating constantly...I wear a clavicle brace 24/7 and now I can hold up my head again without pain (I used to have to make sure any place I went had a high back chair or a wall to lean my head against and it was still agony, so that is what really helps for me). I ordered a hip brace and tried to put in on yesterday but it is for post surgery and should be monitored by a doctor. But, next time my hip goes out, I'm going to try it for a few hours. My hip just started moving on its own, I used to be able to control that. How about a prescription for lanacaine pads. They help sometimes also. But, mainly, I just wrap a heating pad around what ails me, usually around my shoulders and or it is something that just disclocated or sublaxated, use heat to relax it, and the cold press to reduce swelling...that was about all I could do yesterday...and took meds. Do you have an MD in Canada called a physiatrist? I am looking for one in San Diego, they can prescribe meds and know the connection between soft tissue, ligaments, and neuro structure...not the best description, but look it up and see if there are any in your area, and make sure they know about EDS

Good luck, and try to take your mind off it by doing something you love, even if it hurts

Nancy

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It's nice to be validated - congrats on your perseverance ... Wow and congrats on a weight loss of one hundred pounds - I once remember my mom saying to me - if you can control your weight there is 'nothing' in life you cannot accomplish... So by her account you are at the top of your game.... but you need new goals it sounds like. Kinda regroup and think things through. If it's a hip replacement that is top of the list & that is complicated by a deformity and if the local person has a six month wait period - I would as for a referral to someone who has less of a wait - like maybe a couple weeks at most - and that that person be well versed in complex reconstructions .... of the hip.... It will be well worth the travel - well worth it - to get this thing done within the next couple of weeks. If you are not only bone on bone - but the bones are deforming d/t degeneration the pain has got to be in my mind severe. In my mind it is cruel - very cruel to be a physician with a full understanding of what you are experiencing and that your path ahead is to be one of total fix - by a delicate surgery - and tell the person they have to wait six months - and not only wait - but not be given a clear path of how to cope in these coming days (let alone months).... So you know the drill - the squeaky wheel gets the grease - without knowing the medical system insurance wise etc... of Canada - I do know they probably do as many hip replacements as us here in the states - nothing unusual about them these days - so in light of that - there must be a few 'top notch' guys who specialize in replacement revisions of the hip and regular complicated replacements of the hip - the guys and gals who do hundreds of these very 'specialized' type surgeries all the time.... not just your 'average joe' type surgeon - but one who is rather 'famous' or at least the hospital have a great reputation for this kind of thing .... Good Luck to you and again great job on moving forward on your path - things will get better .... they certainly will.... :-)

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Thanks so much for your support & encouragement. It does get really frusterating when the body becomes bilateral with pain. Here I'm complaining about my rt hip & now my left knee has flared up once again. I walk like a penguin lol. My walker has become my best friend cus without it, I would do more harm than good to my afflicted joints. I'm waiting for appointments with the Neurosurgeon. He already sent me for a EMG & the Tech who did it said that my nerves are fine (YAHOO) I had to cancel my appointment with the Neuro cus of a nasty chest infection. I'm also waiting to see the Pain Specialist but ya know what thats all like....the waiting game. So, I have 3 on the go...Hip replacement, possible back surgery L4-L5- S1 is a mess & hopefully Pain Clinic can do a nerve block of some sort in my right buttock. I will keep you all posted.... Thanks once again!

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I understand the relief in finally getting a diagnosis, yay for validation! Then realisty sets in...this is for life so we have to make lifestyle changes too. I'm 34 and just got diagnosed with EDS Type 3 (Hypermobile) about 3 months ago. I also have POTS, chronic daily migraines with aura, asthma, gastroparesis/colonic inertia and of course, chronic pain. In hindsight all the symptoms were there since I was a child: easy bruising, transluscent skin, flexibility/hypermobility, asthma, migraines...list goes on. In the last 8 months I' ve had 3 surgeries: C5-C7 spine fusion with C3 begining to bulge, gallbladder removal, and acid reflux surgery (Niessen fundoplication). Also this year I've developed medication allergies to Zithromax, Bactrim, Avelox, Percocet (Codeine), Vicodin (Hydrocodone/Oxycodone) and Morphine. I can't take NSAID's because of stomach ulcers, so only Tylenol for me. I tried the TENS unit and it exacerbated muscular pain in my neck and shoulder even causing bursitis! Accupuncture is not recommended because of this. I do receive Physical therapy twice a week and the stretching feels sooo good :) I'm treated with prednisone as needed, sometimes for a month at a time, and my Rheumy and I are considering putting me on low dose permanently, I feel fantastic when I'm on it! I also use muscle relaxers (Flexeril and Robaxin, sometimes Valium but it stops working after a while) because they are the only thing I'm not allergic too and helps relieve the pain; without them my spine would not move at all. Florinef helps with the POTS and dehydration, and also helps the migraines a little. If it weren't for the Topamax (migraines) I would never sleep! Since I'm new at this too we're still working out the meds and setting up a good PT regimen.

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