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  • Young, untreated, and time to change primaries!

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    Old 01-21-2007, 02:02 AM   #1
    Odesse
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    Unhappy Young, untreated, and time to change primaries!

    ...and I am terrified.

    Hi, I'm a (soon-to-be) 23-year-old woman with Ehlers-Danlos syndrome, a connective tissue disorder that has had me living in daily pain since just before my teens.

    Basically, what EDS does is render the stuff holding the joints in place partially or completely useless; it also causes the blood vessels and internal organs to be too weak and to lose elasticity - I had a bowel rupture in '05 and have an enlarged aorta and kyphoscoliosis that we're keeping a close eye on now.

    Gravity is the enemy (and, man, that stuff is EVERYWHERE!) - simply standing can have one or both knees, hips, or ankles dislocated, and just shaking hands with someone gives the person a nearly firsthand experience of a wrist or elbow dislocation (pun intended).

    Anyway, on to the pain part: I had foot surgery in '04 after fighting with a nasty primary for 4 years (started the fight at 16, went under the knife at 20). When I finally changed primaries and the new one referred me to a foot/ankle specialist, the joint was SHOT, bone-on-bone. The foot surgery worked wonders and I'm still doing well in terms of the foot.

    I've had lots of ortho evaluations and have been told, and shown, that most of my joints are "shot" and bone-on-bone. All of them eventually need to be either fixed or replaced completely, but going under the knife is my last resort even if a doctor urges me to go for it. I joke that my body is kind of like a used car: I pretty much walk (err...shuffle? limp?) around until something falls off.

    I moved to VA in 2006, and was assigned a doctor by Medicaid. My mom actually called their office on my behalf before going to see them, and explained that I have chronic pain, and the receptionist said, "Oh. Well, she's not on a lot of narcotics, is she? Because we don't do that or refer for that here."

    She didn't give any reason or basis for this, so I went in anyway, and had one of the most horrible appts. in my life. The doc said things like, "Women are built to handle pain." and "I would take your complaints more seriously if you were older, and we all know how women exaggerate..."

    I left angry, upset, and frustrated. I didn't go back until August, when I made an appt. with the NP, and my mom came in with me this time. Unfortunately, it didn't go much smoother. She insisted that the pain was purely emotional, and she told us she'd call in regards to the pain management eval. my mom and I requested. A few days later, I get a message on my voicemail saying that they weren't going to make the referral and that they didn't feel it was necessary.

    I called Medicaid to change primaries, and found out that I was "locked in" until December 06, and that there was NOTHING that could be done about that. Well, now, I have until Jan. 31st to call and change. I have an idea of which practice I might switch to: it's an internal medicine place, but in reality, I don't know it from a hole in the wall.

    I have access to both docs' e-mail addresses - they're posted right on the office's website. My mom insists I e-mail them - I do NOT think this is a good idea...mostly because I'm just too terrified to do it, and I don't want to come across as, well, you know.

    Even the thought of calling Medicaid and changing makes me so scared I feel sick to my stomach. That last doc really drove it home: My pain is not worth treating, and it is not real.

    Man, that's so hard to believe when my jaw hurts so badly that everything I "eat" has to come through a straw, and my dish-washing routine goes like this:

    Wash one dish.
    Lie down on kitchen floor.
    Wash another dish.
    Lie down on kitchen floor.
    Mom walks in while I'm on floor, takes over washing dishes.
    Try to move to somewhere not as hard as linoleum, can't do it.
    Mom picks me up, carries me to couch or bed.

    UUUGGGHHH it's so frustrating. Great, now I'm crying...and I can't even remember what the point of this was.

    I'm sorry this was so long, and anyone who has made it to the end deserves an award.

    How can I not be so afraid? How do I get to the point where I feel that I'm worthy of treatment?

    ~I

     
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    Old 01-21-2007, 02:41 AM   #2
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    Re: Young, untreated, and time to change primaries!

    Hi Oddysy, If your in The tidewter area, one of the best clincs around is in Portsmouth.

    As far as treatment, it does seem the younger you are the less prne they are to start a lif long process of opiates to manage pain and opiate dependnecy. Because it is a lifelong process, meds alone won't likley do it all, other isues arise when it comes to lost hope and dreams and understanding how chronic pain works.

    If you're in Tideater I can give you the name of some great docs, I can't gaurentee what they will prescribe or how they will treat you. It really depends on what othe rmethods you have tried or haven't tried and what will help in addition to prescriptio meds.

    Part of the problem with being on long acting meds is how is the ER doc going to treat your next injury? Particluarly when tolerance rises beyond what an ER or surgeon is willing to prescribe compared to a PM doc.

    THere are good docs out there, but It's not the PM docs job to manage another inury, or frequent injuries. You need one that will work with an orthopedist so everyone knows what each doc is prescribing.
    Good luck, Dave

     
    Old 01-21-2007, 03:29 PM   #3
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    Re: Young, untreated, and time to change primaries!

    Dear Oddyssey,

    Dave (Shoreline) summed it up very well. Your age, unfortunately, will be a factor. I have Lupus and was not "allowed" long-term opiate therapy until I found a PM doctor in 1996/1997, when I was about 27 years old. Even then, the age thing crept up on a regular basis--in spite of the fact that the Duragesic Patch, Dilaudid, and eventually Actiq all work very well for me.

    Currently, my Internal Medicine doctor (a D.O.), prescribes my pain medication. This has worked wonders for my attitude.

    I sort of get the feeling you are being punished by Medicaid. Is Pain Management not a covered problem?

    Keep us posted!

    Sincerely,
    Jon (Conductor)

     
    Old 01-21-2007, 06:07 PM   #4
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    Re: Young, untreated, and time to change primaries!

    Hi Dave and Jon, and thanks for your replies.

    Medicaid DOES cover pain management - it was my physician who refused to both prescribe OR refer. They don't think pain is a legitimate problem, and our last communication involved the phrase, "EDS doesn't cause pain...so you shouldn't be having any problems." Oh yes, like they'd know because they have it and know how it feels.

    A small part of me realizes that my age might be a factor, but I know people who were started on opiates much younger than I am. There's a mom on the EDS boards with a son who was started at 15.

    I refuse to let my age or gender play a negative role in the treatment of my pain.

    As far as injuries: I never go to the ER. I reduce/relocate all of my dislocations by myself...or with the help of a close friend or family member for the hips or shoulders. It hurts like you wouldn't believe, and I usually do pass out from that pain, but you've gotta do what you've gotta do.

    My mom seems to have it in her head that I will get better treatment at the Internal Medicine doctors that I'm considering than I did with the "Family Practice" place where they don't seem to know much about treating anything else but the flu and high blood pressure. Either way, I have to switch docs, and I just hope she's right.

    Oh yeah, that reminded me of something: In '05 when I had that bowel rupture - my intestinal surgeries were done by an internal med doctor, and on my last visit with her (before moving to VA), when bringing up tapering off of the hydrocodone I'd been on (because intra-abdominal infections HURT), she said, "Oh, well with the joint pain from EDS, I thought we were just going to keep you on that and I'd be managing your pain meds from now on..." So I know the age thing is a bunch of B.S. and part of it is finding the right doctor, BUT the thing is:

    Once I switch and Jan. 31st rolls around, if the doctor I switch to doesn't seem receptive or refuses to refer, like the previous one, I'm stuck until December '07/January '08.

    I don't think I'm anywhere near Tideater - I live in Damascus, which is near Abingdon, Bristol, and is close to ETSU.

    I so loathe seeing the word "allowed", but I understand the context in which you used it. Why should pain relief be something that has to be "allowed" rather than given? I know this might sound crazy, but at this point, I would consider pain relief a gift.

    ~I

     
    Old 01-22-2007, 07:45 AM   #5
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    Re: Young, untreated, and time to change primaries!

    I started taking opiates through a pain management doctor a few months after I turned 25 (I'll be 29 in March). My age was not a concern at all, nor did I have to go through non opiate therapy to be prescribed them. I didn't even have to see the office psychologist to determine how pain affects my life. After my first appointment, I walked away a script for 15mcg Fentanyl patches to try for one month, then when the patch refused to stick to my skin past one day (superglue might have been the only answer!), we switched to Morphine. I was also given the choice of Oxycontin, but Percocet and I go way back so my tolerance was through the roof already and I did not want to even bother trying. I had problems with other doctors though, they would usually give me a months supply of Percocet and then not want to hear back from me. If not that, then they would assure me that prescription Motrin was the answer.

    I don't have EDS, although it has been suggested many times. We haven't found a name for what I have, but my bones did not grow right and all of them are mishapen/deformed. They're also very thin and weak, but I've been lucky (and extremely cautious) because I've never broken one before. The worst (little problems) have been dislocations: my thumb was dislocated and no doctor wanted to try to relocate it because they were afraid of breaking it or my hand so it's still "out" today and related problems. I've had over 2 dozen surgeries to help fix the issues, but my most serious was a cervical fusion on C5 and C6 in 2003. What's scary about that is that it just happened: one day I noticed excruciating neck pain and after a few months of agony I saw a Neurosurgeon and was operated on ASAP! Most of my back/neck is naturally fused and my neck curves the wrong way. I could go on and on, but I'll end there

    Does the state you're in have a health insurance pool? I'm on New Mexico's (NMCHIP or whatever they're calling it now) and they do have good reductions on premiums (or no premiums at all) for people with low or no income if that's an issue. They've been really good about paying for pretty much everything so far, even prothsetic appliances (2 back braces, a few crutches and assorted devices) and other stuff they normally wouldn't cover because I can prove I have extenuating circumstances. I'm also allowed to change doctors at any time for any reason at all and I don't need a refferal.

    Anyway, I do hope you find someone!

    Last edited by Fibbles; 01-22-2007 at 07:55 AM. Reason: I wish I could spell!!!

     
    Old 01-22-2007, 06:10 PM   #6
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    Re: Young, untreated, and time to change primaries!

    Hi Lisa and Fibbles!

    Thanks for replying, your replies made me feel a whole lot better about myself!

    Lisa: Yes, I relocate most joints myself, but sometimes I need help from someone with the bigger joints - hips and shoulders. I've only gone to the ER for the bowel rupture, and once for chest pains because we were afraid it was my aorta (it wasn't, thank goodness).

    And my mom hates having to do it, but she will. She just hates to have to see me in that kind of pain. It took forever for me to convince my friend to even consider helping me reduce things myself, and this is a friend of 17 years.

    The only time I've been "pumped-up" with morphine and Ativan was right before having an NG tube placed for continuous suction.

    It is quite painful to do it myself, and as I said before, I do lose consciousness sometimes. I choose not to go to the ER because I have these kinds of dislocations A LOT, sometimes multiple times a day, and 1) I don't want to be looked upon as a drug-seeker, and 2) going to the ER that frequently when I can deal with it myself is RIDICULOUS!

    I do utilize braces to stabilize joints as best I can, and have had multiple surgeries to correct specific problems. I also do strengthening exercises on a daily basis to strengthen the areas around the joints. These are really just palliative treatments, and do not do anything for the pain.

    Dontcha just love it when doctors insist that OTC Motrin or whatever works just as well as prescription pain relievers? Ugh, I've heard that many times, too, and if it was true, I'd be pain-free!

    Ok, so...my mom also recommended calling and talking to someone at their office about how they handle patients with pain. I was reluctant to do this, as I don't want to come across the wrong way or be misconstrued. If I call and ask about the doctors' (there are two internal med docs in this practice and two NPs) philosophy on pain, do you think I could be seen as a drug-seeker? That's the only thing I'm really concerned about.

    And I don't just want someone to throw meds at me - I need to know if and/or when I have a problem that needs to be addressed surgically, or at least by a specialist of whatever part that is.

    I have the same qualms about opiate therapy as you do, Lisa, and I'm not even on any yet! A lot of EDSers do, too, from what I can see. I'm not sure if there's any way to really get around it, unless you have some kind of support system, or friends who might listen when you need to talk, maybe.

    I know it's a slippery slope. I've exhausted all kinds of NSAIDs as well as amitriptyline and Trazodone, I've also tried Tramadol with no relief. I know I have the strength within me to handle this - whether or not the medical team to be entrusted with my care does...that has yet to be determined.

    Ok one specific question: I have both doctors' e-mail addresses, they put them right up on the website. Should I e-mail them personally, or would it be better if I spoke to a nurse instead?

    Thank you, thank you, thank you for reminding me that I'm being RESPONSIBLE for doing what I'm doing. I do not have to go this alone anymore.

    ~I

    Last edited by Odesse; 01-22-2007 at 06:13 PM.

     
    Old 01-22-2007, 08:45 PM   #7
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    Re: Young, untreated, and time to change primaries!

    Man..........I don't want to say "you poor thing" because I don't want it to seem like I'm patronizing you but.............."YOU POOR THING!!!!" I can't believe what you go through!! I definately would call and talk to a nurse only because you never know who is the one to get the e.mails that go to the office. It could just be a receptionist-type person who has no medical background (even though most of them think that they do and are usually on some sort of power trip so it is virtualy impossible to get a question to the doc because you can't get passed them!) There are also those nurses who are on a power trip too and it is tough to get a question through to the doc. (although you are not really needing to get a question to the doc). The only thing that I worry about is that if you aren't an already established patient there they might be reluctant to answer any questions. AND........listen.........you HAVE to get over thinking that you will appear like a drug-seeker!!!! I can't emphasize this enough! Trust me on this! I could not have struggled with this issue more. We're not allowed to state our profession, but let's just say that I am usually on the opposite end from being the patient (if you know what I mean). I used to work in the emergency dept. where we had a book with the list of drug-seekers who would come in on a regular basis for their injection of morphine or demerol. SO!!............to be on the opposite side of the fence now just freaked me out! I finally got good advice from my psychologist and from my friends who told me that I had to stop feeling that way. Trust me honey...........if we don't advocate for ourselves, NO ONE WILL DO IT FOR US! No one knows how much pain you are in except YOU. You need to ask for what you need and not be ashamed or embarrassed because of the fact that you need pain relief. If you had adequate pain relief, just think how much better the quality of your life would be!! JUST IMAGINE!! Just imagine what your mind could focus on, rather than focusing on the pain. You are so young!! I know how you probably feel when I say that. People say that to me constantly (I'm 41) and it makes me feel like, "Ya......ok.......ok........I'm only 41.....BUT I'M IN PAIN!!!.......I'm sorry that I'm only 41 and in pain.......BUT I AM!!!!" LOL I don't know if that's how you feel, but that's how I always feel. It's like somehow we don't have permission to be in chronic pain because we're "young". The only reason I mention that you are so young is because you should be free of pain enough to enjoy your life and enjoy being young. That's all. You sound like such an articulate young woman and I can't imagine any doctor thinking that you just want meds thrown at you. You sound like you have exhausted quite a few other avenues regarding pain relief and like I said there is no shame in requesting a narcotic pain medicine to get relief of unrelenting pain that you are finding it hard to cope with anymore. REMEMBER..........you ARE responsible. You are not just jumping on the opiate wagon right off the bat. You have tried lots of other things. You are requesting to be seen by a doctor who specializes in managing people's pain and who specializes in these types of medicines so as to be monitored by him/her on a regular basis. Do you see how responsible you look?!!! You just have to keep remembering what you are doing here. Try not to focus on the narcotic aspect of the medication and just on the fact that you need adequate pain relief and you have never had it and you deserve it!! OK........lol........I'm really rambling on and on. I just so want this to work for you because I have been down this road. It is a really scary road and you sometimes feel like you are all alone (even when you are surrounded by people who love you......but unless you're in the same boat you can't "really" understand). Again...........write me back if I can help in any other way.
    Lisa

    Last edited by Swany; 01-22-2007 at 08:52 PM.

     
    Old 01-23-2007, 09:40 AM   #8
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    Re: Young, untreated, and time to change primaries!

    Hi There and welcome to the boards.

    I can totally relate because I too have EDS. I have type 3 but it is believed that I am crosstyped with 1. New studies suggest that individuals can have various types at one time which makes things all the more difficult.

    I was not diagnosed with EDS until I was 30, I am now 41. I constantly sublex and dislocate. My hip was actually born dislocated and an experimental surgery was done to put it back into place when I was 8. My biggest problem right now is that my jaw dislocates on a regular basis. All I need to do is chew the wrong thing, like meat, or yawn and it dislocates. It's no fun putting back into place.

    The biggest problem with EDS is that many doctors are not aware of it even though millions of individuals suffer from it. Because it is genetic the numbers are even higher. Doctors simply do not diagnose it properly. I do all I can to educate them.

    I started on mild pain medication at age 18. If you read my post on changing medications you'll see my history.

    What I would suggest is that you contact the National Foundation in California and find a local chapter in their area and see if there are any doctors who specialize in EDS and Pain Management. You might get lucky and find someone who does understand. Seeing an Orthopeadic surgeon, in my opinion, isn't your better option because they can only offer you stop gap operations that can end up causing you more problems in the long run. Doctors such as these only treat the immediate problem but not the disease and the pain that it causes itself. Additionally an Ortho is highly unlikey to offer you any type of pain relief, they do one thing and that's operate. If you are not a surgical candidate and you are braced to the hilt there's noting more they can do.
    I tried that route, you end up nowhere.

    Just because you are young doesn't mean you do not have the right to be treated when you have a condition that will never be cured nor never get better. Surgical interventions are rarely the answer because it won't fix your collagen or the fact that you have a disease not an immediate need. Many of us who suffer from EDS have all been through what you are going through. It's often difficult for someone who doesn't have EDS to really comprehend the complexity of the disorder, especially doctors.

    Like you all of my joints are bone on bone. Becaue EDS is collagen based our cartilage to begin with is not normal, it is often a mush like substance. It breaks down rapidly over the years. Things like steriodal injections make the joints deteriorate at a much faster rate than normal.

    Unfortuntely for both you and I and the millions of individuals who suffer from EDS our condition will never get better, it will only get worse over time. It's not something that ever goes into "remission" and this is a really hard concept for many doctors to grasp.

    Before I started seeing a PM, because back in my 20's and even early 30's they didn't exist or weren't in my area, I had a great Rhurmatologist who was very much in tune to EDS (even though we didn't know I had it) and pain in general. He helped quite a bit in managing my pain. It was only when I started on Percocet that he wanted me to start seeing a PM who was new in our area. Because of the Laws in Ohio he did not feel comfortable in prescribing Percocet on a monthly basis.

    Things that I have found benificial with the EDS is aquatic therapy, TENs unit and Lidoderm patches. Of course wearing your braces and knowing your limits is also extremely important. Prevention for us is the big key.

    I do think that joining an EDS support group would prove to be very benificial. Chances are there is one in your area, you'll have to check with the National Chapter but there are new groups popping up all the time because more and more individuals are finally being properly diagnosed.

    In regards to Fibbles comment. I would doubt you have EDS, it sounds like you have Brittle Bone Syndrome and maybe Hypermobility Sydrome perhaps. EDS does not actually effect the bones, it effects the cartilage and collagen. Bone deformaties are not a sign of EDS. The basic characteristics of EDS are loose fragile skin that bruises and or tears easily, joints sublex and dislocate easily, many suffer from TMJ Dysfunction as well as dental problems in general. Your best bet is to seek out a qualifed Geneticist. If you feel you have EDS get tested for it. Unfortunately there's no cure or anything that can be done other than prevention.

    Depending on the type you have it can and does affect internal organs. Types 1 and 2 can be fatal.
    The only way to really be diagnosed is with a skin biopsy. Unfortunately type 3 can not be found via a biopsy it is diagnosed via ruling everything else out and based on the symptoms, particularly the loose joints.

    Any doctor who tells you EDS does not cause pain does not know anything about the condition. Type 3 is the most painful and pain is one of it's primary symptoms.

    Good luck to you. If there's anything I can do for you I'd be happy to help!

    Barbie
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    Last edited by Kissa; 01-23-2007 at 09:56 AM.

     
    Old 01-23-2007, 05:48 PM   #9
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    Re: Young, untreated, and time to change primaries!

    Oddyssey,

    Honestly, I'm having to pick myself up from the ground just thinking about doing the bone reduction yourself. UGH!!!

    I have done some reading on this disease (EDS). The whole idea that you are too young to be treated for pain APPROPRIATELY, really irks me. Please know that when I used the word "allowed"--I was just using it in the way that it made me feel. My doctors, up to that point, always felt I was "too young to be on opioid therapies". WHEN THESE PEOPLE GET TO BE ON THE OTHER END OF THE SPECTRUM, THEN THEY WILL TREAT US--AT ANY AGE, HOPEFULLY--WITH THE APPROPRIATE MEDICATIONS!

    This thread has really been eye-opening for me, and I take specific notice of all of the lengthy posts. These posts needed their specific lengths to describe their positions and frustrations. I greatly appreciate learning about this condition and will keep my eyes and ears on the look-out for information. I have Lupus and the Lupus Anticoagulant, and I'm sure many of our symptoms feel frighteningly similar.

    To all of you, I wish you well.

    Sincerely,
    Jon (Conductor)

     
    Old 01-23-2007, 08:13 PM   #10
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    Smile Re: Young, untreated, and time to change primaries!

    Hi Oddy!

    I am so sorry to hear what you are going through. It sounds awful. and I hope you get some much needed help soon. Age has NOTHING to do with having your pain managed, that is so ridiculous.

    Take Care and (((((Hugs)))))
    Cpapp31

     
    Old 01-23-2007, 10:39 PM   #11
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    Re: Young, untreated, and time to change primaries!

    don't stop til you find the right dr he or she is out there ,never give up i almost did right before i found the perfect dr and meds ,good luck kelsey

     
    Old 01-24-2007, 08:20 AM   #12
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    Wink Re: Young, untreated, and time to change primaries!


    wow! You've gotten wonderful advice from Barbie! I don't remember ever hearing of this disease. I really feel for you both! That is great advice to research doctors who specialize in EDS in your area. I'm wondering if you've had any luck with a PM doctor. I think that is also an absolute must! And, Barbie's advice regarding Ortho surgeons is right on. They are Ortho "surgeons" so they are obviously going to probably suggest surgery as that is what they specilize in. From what Barbie says about the condition.......this will not help, in fact, it DOES sound like it would only complicate your condition. I hope that you can write soon as I'm sure all of us hear are wondering about the progress you are making.
    Lisa

     
    Old 01-24-2007, 11:17 AM   #13
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    Re: Young, untreated, and time to change primaries!

    Swany you are absolutely correct. I just had my 14th operation, mind you nearly all of them were major, not just simple little scopings. If doctors had been aware that I had EDS then I would suspect nearly half of these surgeries would not have been necessary had they done proper prevention like braces so my knee's wouldn't pop out of place without notice. Nothing like walking along and pop there it goes and you're laying on the sidewalk with your leg jetting out in the wrong direction!

    A person with EDS doesn't heal properly because of the collagen dysfunction. Operations create serious problems in that it takes months or even years to heal properly from them. It also affects your autoimmune system. When I get sick with the flu it lasts for nearly a month if not longer. I can not be near anyone with a childhood illness or anything thats highly contagious because I do not have the immune system to fight or ward off communicable diseases.

    I was fortunate in some sense that while I suffered from chronic pain from EDS since age 10 (and I remember that day so very clearly)I did have a good ortho who did help some in my later teens with mild medications. In my early 20's My Rheumatologist took over from there. But I was still left severely undertreated because of my age and because doctors lacked the knowledge of my disease.

    I was constantly told I was too young to be in pain and that it was all psychosematic. People who do not have EDS, especially type 3, will never comprehend the amount of pain it causes without even having an injury.

    The biggest problem is that most individuals who have CP have valid reasons for pain because a result of an injury or accident or perhaps a herniated spine etc. In other words the vast majority of you were most likely born healthy and lead healthy normal pain free lives up until whatever happened happened to cause the source of your now current CPS. Generally the source of your pain can actually be tracked to something in specific. This is not the case with EDS type III which is why it is even more difficult to get help!

    People with EDS are not born healthy and the pain is sudden and often acute at first. Being that doctors can not see a visable problem, ie a herniated disk, they are less likely to treat a patient with narcotics as opposed to someone who may have had surgery or broke their back.

    Add in the factor that the vast majority of doctors in today's society do not know what EDS is therefor when you remain undiagnosed with severe pain they are led to believe it's all in your head instead of sending you to a geneticist.

    Many of the doctors I have seen have told me that my joints were loose and they thougth I had some rare form of arthritis but no one wanted to wanted to send me for testing let alone treat my chronic pain. Doctors love to see me visit their office because I was this medical oddity to them and a challenge to their practice but yet they refused to help control the pain.

    Unfortunately I spent the vast majority of my 20's and my 30's with very high pain levels that truly were left untreated or treated with medications like Vicodin on my worst days when I could not walk to darvocet on a daily use. I would surmise that I was on darvocet for nearly 15 years from the age of 18. Talk about tolerance! But I had no other choices which is why I did take an actual class in Pain Management and learned meditation etc.

    I totally understand where you are coming from because your life is a mirror of my very own life. My son who is 20 is walking down the same path as well. His spine is totally shot as well as his shoulders.

    I am now 41 and am being treated with Fentanyl for pain (recent switch). It reduces my pain at about 50% at the most during this current time. What scares me is what is going to become of me when I am 50 or even 60? I am hoping technology advances enough that there will be better pain control.

    What is extraordinarily difficult for both you and I is making doctors understand that our condition will never really stabilize or go into a "remission" and will continue to get worse with each passing day. Education is the key.

    I carry with me a pamphlet about EDS and along with a card with the Foundations website on it and information for doctors. I hand it out at every ER visit, every doctors visit or anytime I'm near a medical facility in order to educate doctors in hopes that someone like you will not have to wait some 35 or more years to get the help you need.

    One last thing I might mention about EDS. I am not sure if you are like me and my son but our bodies process medications much differently than most because of the collagen dysfunction. It was explained to me long ago why but I don't recall the exact details. Basically when given a medication that will sedate the average individual often our bodies will react in the most opposite direction. I was on Morphine for about 3 years, while it makes others tired I did not sleep for more than 1 hour at a time in all those years except on a rare occassion. So suffice to say when you find someone to treat you it will be a lot of trial and error and you'll have to be really patient in finding what is going to work best for you with the least irritating side effects!

    Sorry for being so long winded. I really try to take every opportunity I can to educate individuals about EDS. Some scientists do believe that 1 in 5,000 have EDS because it is genetic and they believe there are millions unaccounted for because they've either never been diagnosed, their symptoms are subtle or they have been diagnosed with something else like arthritis or even Fibromyalgia or Chronic Fatigue Syndrome!

    Good luck and again please let me know how you are doing and what I can do to help you in your journey.

    Barbie
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    No matter how great your illness or pain, there's always someone else who may be worse off.

    Last edited by Kissa; 01-24-2007 at 11:19 AM.

     
    Old 01-24-2007, 03:02 PM   #14
    sharonn
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    Re: Young, untreated, and time to change primaries!

    I am so sorry for all you are going through..I hope to God you find a compassionatr MD who will treat you with the dignity you deserve. Love,, Sharonn

     
    Old 01-26-2007, 06:03 AM   #15
    Odesse
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    Re: Young, untreated, and time to change primaries!

    Hi everyone!

    Wow, I didn't expect my thread to get this much of a response! It means a lot to me that I inspired some of you to look into what EDS is - thank you!

    I'm going to make this quick because I've been working online re: this very issue for a while and I need rest.

    About what I've been doing: I've been contacting some pain foundations and such with my story. Not sure what it'll do, but I don't see how it could hurt.

    Wrote to the local paper about EDS and pain, etc and it looks like they liked what I had to say - it's going to be in the paper (not exactly sure when).

    ABC had a segment on EDS on Wednesday night, and most EDSers were pretty annoyed - it made EDS to look like this freakish condition, and did NOT touch on the pain aspect, and what it means to really be living with it. I wrote to my local ABC station, and they contacted me and would like to follow-up with me.

    About the EDNF: I am a member there, have been for more than a year and, unfortunately, there is no support group near me. I've posted a few times about trying to find a doctor, but nobody could give me names, only advice, but it was good advice.

    About orthopedic surgery: I've actually only had one orthopedic surgery so far, and it was very necessary, and helpful. The surgeon who operated was wonderful, said the same thing you did, Kissa, about EDS. I started having sharp pain, locking up, and bluish discoloration of my left foot and ankle in 1999. Walked around on it until 2003, when I finally admitted that something *might* be wrong. Well, turns out that the EDS had caused my foot to become so malaligned (you know that big bone that sticks out on the inside of your ankle? I was walking on that) that my Achilles tendon had formed a fixed contracture, the bones in the foot itself had actually changed shape and had eroded to the point where some of them were fused where they shouldn't have been. My ankle joint was so severely compressed that it was crushing the blood vessels that run through there, causing the circulation to the rest of my foot to be cut off. If I didn't have the surgery, I would have been in danger of having to have the foot amputated. I had an Achilles tendon lengthening and a bunch of fusions, and most of the bones were so messed up that they had to be shattered and re-built. Spacers were put in to keep them from becoming compressed again. Had hardware removal six months later, but still have one small screw that isn't bothering anyone. That foot is way more functional now, although it barely moves in any direction. I'm still limited in terms of walking (but that's not entirely my foot's fault), but at least I can keep my foot!

    I totally understand that orthopedic surgeons are not meant for pain management, and surgery will NOT cure this condition. I am very wary of doctors who are quick to throw me under the knife.

    Kissa: My jaw is misbehaving, too! It's been consistently "bad" for...almost a year now. I can no longer chew (period) and I'm straw-bound in terms of "food". Oooooh I hate when I have to yawn or sneeze, both of which cause my jaw to come flying off of my face.

    Lisa: I don't think you're being patronizing at all - you were just being honest and thoughtful. It can be hard for someone without EDS to understand how it feels to have it and that it just becomes "normal" after a while.

    ~I

    Last edited by moderator2; 01-26-2007 at 11:34 AM.

     
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