Joint hypermobility disorders :
Really getting fed up... - - Posted by rhea (rhea), 19 March 2003
Hi my fellow odd bods,
I hope you are all doing as well as possible and staying *safe*.
I am feeling quite frusterated and irratated with my body and medical treatment. First off, I've gone through hell getting off oxycontin and am now finally down to one pill every 38 hours. I hope to be completely off of it in the next week or so. I had a bit of a tiff with the docs about taking antidepressants as I've tried two before and they made me terribly sick and did not help my pain at all. The docs forced Effexor on me anyways so for 2.5weeks I took it and for 2.5 weeks I had severe diarheoa, nausea, headache, and vomiting. I got fed up with it and discontinued it and the rest of me felt a lot better. And this Vioxx I am on hasn't done DILLY for my pain either! I had voiced my concerns about its effectiveness because we know I don't have any joint inflammation...so how could this drug help? While trying to convey my concerns I was interrupted with "it'll work". Hmmm.. well I've been on it for four weeks now and it still hasn't helped at all! And to top it off yesterday I got our copy of the doctors summary of my hospital visit. The geneticist I had seen said that I did have hypermobility. Not severe enough to be considered a Marfan or EDS but I she said I had enough to cause mild pains. I guess she never submitted her report to the rest of the docs because in the official summary it says I dont have any hypermobility. In regard to my knees, the summary only quotes physio as suspecting that I have tracking issues in my knees even though rheumatology/orthopaedics (in addition to the staff pediatrician) said in my consultation with them that I def. did have tracking problems. And for follow up care the main suggestion, other than PT, was psychiatric care! I feel like my concerns have not been taken seriously and that I have been "blown off" so to speak. I'm trying my darndest at this "chronic pain rehab" but without any meds that help in the slightest with the pain I am not getting anywhere. I push through as much of the pain I can, and end up having a terrible, sleepless night and feeling even worse the next day.
Have any of you tried this chronic pain rehab? Was it at all successful? What works for reducing pain and helping you have a better sleep? Do any of you feel blown off and not taken seriously? I feel that because my mri, xray, and lab studies were normal that I have been dumped into the nutcase bin. I am extremely greatful for having a kick butt knee OS who took me seriously and am dearly hoping that my scope in Sept. will show what the heck is wrong with my darn knees.
Thanks for listening to me. This past month has been frusterating and I often wish I had never even tried to investigate these other aches and pains. I am sick and tired of being sick and tired and not knowing why! And I really do not want to see any other doctors (other than my knee OS) ever again.
(((Hugs))) to my odd bod pals,
rhea
Posted by AC (AC), 19 March 2003
...I still don't understand why you are waiting around till September for this scope. If you pain is so severe Dr. Fowler should be able to bump you up.
Stacey never waited that long did she?
I also have a friend of mine who is a Student in London and has viewed some of Dr. Fowlers surgeries in the OR with him. She said that for very severe cases, the waits are reasonable. (My friend was trying to convince me I should go see him for another opinion....)
Dr. Fowler must not realize your condition has changed. And maybe if he can't scope you sooner, he can at least see you again and give some more suggestions on what you should do until the scope so you can live with some quality of life.
Call him and let him know. What is the worst that can happen...you'll still keep your Sept date...but maybe you can get in sooner?
PS If the hospital thought your knee pain was from tracking/hypermobility, what did they think caused your other joint pains?
Best of luck.
Please don't sit around waiting for a scope that might not even solve or diagnose your problems. Do yourself a favor and try and call them.
Good luck!
Posted by Shazinoz (Shazinoz), 20 March 2003
Rhea,
these doctors OBVIOUSLY don't know much about EDS and such, they have probably only ever heard of , read or seent he worst cases. There is a WIDE spectrum of severity and such. Realistically there is No way they can say you aren't hypermobile enough to have EDS, this is a COP OUT, I was told this too, and it just ISN'T true (I have seen the picture of your hypermobility and you are a LOT worse than me in some joints at least and my GP now says definately HEDS). If you have the symptoms of EDS particularly HEDS (the hypermobile) form then you probably have it. Most of these doctors seem to think that EDS is either the classical form or the vascular forma dn don't realise there are like 7 sub groups of EDS and ALL are different and ALL differe in severeity.
Chances are you have EDS or Marfans Rhea, and I would try to get to see someone about this.
Pushing through the pain can cause SEVERE injury and damage to your body, you should way up if you are getting any benefit from this rehab, and if it feels like it is making your pain and joints worse then PLEASE DON"T do it, the saying for those of us Odd bods is No Pain then Gain, pain for us is more limiting that the EDS itself, and anything that makes your pain worse should be stopped.
You are going through what I went through from the age of 12, where becuase nothing shows on there tests they think you are making it up, but with EDS and such it is VERY rare for anything to show on tests, unless that joint has a specific injury at that time.
Thses doctors should go back to school and try actually listening to there patients, you live in your bosy and NO ONE knows what that is like but YOU, they cannot tell you that what you are feeling is WRONG, that is Cr@p, What you are feeling is REAL, and NOT in your head. I too was sent to a psychiatrist for "behavioral modification" and I found that it mademe wosre, he wanted me to try some form of like self hypnosis and such and made me do all sorts of wird things and this infact made me worse by putting me into position that mad eme hurt worse,a nd by trying to take away MY coping mechanisms.
IF one medication doesn't work for you rhea then keep searching (it is infact VERY common for EDS'er to have bad reactiona nd allergies to differnt meidcations and food and a lot of things.). I too am on Vioxx even though I don't have inflammation in my joints but it is used to actually increase the effectiveness of pain killers and other medications and such, it makes it so that the amount of pain killer you take can be lowered. I to don't think it helps my pain, but I believe it could be helping my pain killers.
I have tried many pain killers and like you have had some pretty nasty side effects (i have tried Endone, Oxycodone (allergic), tramal (allergic), torodol, panadine forte, dygesic, MsContin and More and have found the MsContin for me is one of the best I have tried, when my dose is increased I get some side effects, mainly neausea, constipation and brain foga n such but over about a month these drop off, I started on 15 mg twice a day and now take 45mg twice a day).
You need to keep trying rhea until you find something that works for YOU.
Also you need to get in touch with a support group for EDS (from you symptoms and such rhea (you sound SO MUCH like me), you probably have HEDS like me) even an online one like CEDA (there web site is down at the moment but you can join the list serv by going to yahoo and searching for "CEDA's EDS mailing list family! " and then asking to join, they can then also put you in touch with the teen listserv as well. this way you can find what doctors in your area may in fact help, what services are available for you, what meidcations others have tried that help and just get support.
I am sorry this is so long, but what you are going through is VERY common in an EDS'er (and it is what I went through as well).
Good Luck rhea and hang in there, WHAT YOU ARE FEELING AND YOU PAIN ARE REAL
I am sorry you have to go through this rhea and have such UNCARING doctors, who have the bedsode manner of a rock.
Sharon
Posted by SL99 (SL99), 20 March 2003
HI Rhea,
I'm so sorry that things ren't going to good for you right - I haven't been around much lately but I'm still thinking of you as always Darl.
I'm glad you are managing to get off the Oxycontin, although I'm sure it's torture and I so wish that the other drugs would help you more. Please stay strong and hang in there Sweetie, I know it's easy to say but you know I'm talking from a similar place. Hopefully they will find some combination that works for you and I know you're feeling frustrated by it all right now but give it a chance and beleive that it will work out.
As to the doctors reports, they are likley to be very fragmented and will need to be looked at as a whole to get the full picture. I understand being angry at certain things that have been said though Sweetie. Can I ask you what tests you had done while in the hospital Darl? I can only assume that the geneticist had good ground for ruling out the EDS/Marfan links due to your results as if anything they tend to be very thorough. And they certainly wouldn't have ruled out Marfan without having full test results form your eye exams and a heart scan amongst many others. I know that for sure as I'm in the middle of the batch load of test myself right now! 
As Shaz says, it may still be possible you have hypermobile EDS , but a lot depends on exactly why your geneticist felt it not likley. It is possible to be in as much pain as HEDS with HMS and a chronic pain syndrome whihc hopefully they will be able to start working on with the rehab. I just pray that they can find the right drugs and rehab routine to suit you and make a difference to you.
I definitely think you need to gee things up with your OS though, as he should be put in the picture about your results, assessment and condition right now at the very least. Don't be afraid to ask questions and find out why people have come to certain decision though. If you're not happy with there thoughts or opinions tell them and ask them to explain it to you - that's your basic right and can avoid a lot of problems in the future beleive me.
I know it's not going well at the moment sweetheart, but hang in there and focus on how much better things will be once this starts working and of course on all the people who are willing you on every step of the way too! Take care Rhea and remember I'm here if you need me.
Love and big hugs.....Jo
xxxx
Posted by rhea (rhea), 20 March 2003
Hi Shaz, AC(Thanks for your reply,I replied to your post under the other heading) and Jo. The main reason why EDS and Marfan's were ruled out was because my skin is not hyper-elastic and doesn't have stretch marks, my eye lenses don't sublux or dislocate and I haven't dislocated a joint (except for my hip which did not require medical help to relocate it but the docs didn't really believe me that it does pop out because I can't make it pop out at will). They also said that EDS/Marfan's doesn't cause the degree of pain or disability I have. Marfan's was ruled out because my body is proportionate and my hypermobility is not extreme (ie/ my pinky bends 80 degrees to my hand and not 90, my thumb goes back within an inch of my wrist but does not touch my wrist etc... although I must say my hyperextending elbows, bendy fingers, and feet in opposite directions did impress them) I am still getting an echo done to fully rule out marfan's but the geneticist said she would be "very surprised" if it showed any abnormalities.
Shaz-Wow, what you said about food is neat. For years and years I loved meat and would eat it all the time, but all of a sudden I can't eat much of it at all without getting very ill. Weird! And my side effects and withdrawl symptoms from drugs are all much more severe than other people. My skin has also gotten super sensitive to hot and cold too. It sounds like our crazy bodies have a lot in common! I'll add you to my Y! list so we can chat the next time I am on. I'm not on a whole lot right now as sitting is uncomfortable with my hips and spine but hopefully we can meet up soon.
Hi Jo,
I'm so sorry you have had it so rough lately too! How is your poor elbow feeling? I hope its mostly healed up now!
I didn't have any tests done in that hospital. I had an eye exam a couple months ago that was normal as well as blood work and some spine/hips/chest x-rays all of which was ordered by my rheumatologist and led her to believe I did have eds/marfans. That was the extent of testing I had. Its frusterating being "jerked around" like this. Having docs saying one thing and others saying other things. It just makes me wish I never tried to investigate any of this.
Well I should try to do some more school work. I am investigating completing my schooling through a correspondence course where I can go at my own pace as the way things are going right now I don't see myself being back in a school setting.
Byes for now. Thanks so much for your replies Shaz, AC, and Jo! It helps a lot to talk with someone who is also stuck in medical limbo.
(((hugs)))
rhea
Posted by Stacey (Stacey), 20 March 2003
Hi Rhea
Sorry to hear your not feeling that great. I Just wanted to clarify something I did not have to wait that long for my surgery but i believe that was becasue mien wasnt a tracking issue and was absolutely causign damage to things if not handled correctly. Plus as he is in a teaching hospital he understands and tries to accomidate students quite well. I told him the only time i could have anythign done was in the early summer months or i would have to go somewhere else. It was just pure luck that they were able to squeeze me in somewhere (my scope was only 20 minutes and hte surgery was under 50 i believe).
I am always on yahoo! mesanger (and msn adn ICQ) if you ever want to talk. Sorry i havent written back to your email yet but school is so hectic right now!!!
I am starting to get to hte point you are with doctors, i know have 3 GP's, a PT, an OS, they are sending me to a sports doctor (to get an OT) and a rhemy. Im beginnign to wonder if its worth getting everythign checked out or just trying to live with it. ALl this plus full time univefrsity life (Ive had to drop a course unfortuantly) and occasional work is just way to overwhelming!! And im really starting to hate doctors where the want you to see them but then dont listen to you! I went to my school GP yesterday and said i wanted to try going off bextra and all drugs for a week or so to see if it makes a difference he said yeah that was fine but then lifet and came back with handfuls of tylenol atrhritis (cant take it) and mocoxib (i think thats how to spell it) to try.
Sorry the spelling is attroucious but my wrist and thumb are really hurting today so i may not be hitting the right keys in the right order 
Stacey
Posted by AC (AC), 20 March 2003
Hey Stacey, how long did you end up waiting for your scope?
I couldn't imagine ever waiting as long as some other people on the board. When I scheduled my LR, I got in within 3 weeks (I think it was actually even less). The wait for my TTT (If I schedule one, will be about the same).
I wouldn't wait 13 months for simple 15 minute scope. But that is just me. There is just too much life to live, to just sit around waiting for something that might not even give me answers.
That is just me though!
Good luck everyone.
Posted by rhea (rhea), 20 March 2003
Hi Stacey and AC,
How long did you end up waiting for your scope Stacey? I am sorry you to are feeling frusterated. I just find it so maddening to have seen so many bloody docs. and to have gotten absolutely no where.
AC- I would not wait 13 months for a scope (Dr. Fowler says mine will take 1 hour to 1 hour 1/2) if I had a choice, but I am at the end of the line. I saw three other doctors a hell of a lot closer than 7 hours away from home and they did not offer any help at all, so I pretty much don't have a choice in the situation. I'm sorry to read that everyone is reccomending a TTT... But hopefully if you do decided to go for it it will work out well for you and make your knees more functional.
Byes for now
(((hugs)))
rhea
Posted by AC (AC), 20 March 2003
Yeah but now that you have a Dr. who thinks you need a scope or more, can't he refer you to someone else to do the scope? Then if you maybe do need something more (the new doctor could take pictures or even video during the scope for you to show Dr. Fowler) and Dr. Fowler agrees, you could get on that waiting list sooner.
I would think Dr. Fowler would be happy to get you fixed up sooner. A simple scope is something any OS should do with ease.
Just an idea. Think about it.
At the very least I would get another appt to go in and see Dr. Fowler. Your condition has obviously worsened since you last saw him...he should be aware of that and might have different recommendations if he saw you.
Posted by Stacey (Stacey), 20 March 2003
Hi Rhea and AC
I had to wait 5 months to get into see the OS, 4 months for hte scope and 3 months after that for hte real suurgery. Rhea, I do agree with AC you should make an appointment to get into see Dr. Folwer again, I know its not the easiest thing but he is ar eal man, if he actually sees how your life is being affected he wil do his best to get you accomidated. I think the fact that i burst out in tears at one of hte appts is the reason i was short listed as he say that it was affecting my life drastically and that i was in pain.
Posted by AC (AC), 20 March 2003
I agree with you Stacey. She needs to go back and see him. I am sure he can move her up if he feels her situation is severe enough. Look, you got an appt, and two surgeries in the time Rhea is waiting for one scope!
And if he can't help her sooner, maybe he could get her in to see another OS to do the scope and go from there.
It is worth a shot. Sitting around waiting isn't doing any good!
Hope things start to look up for you Stacey!
Posted by Shazinoz (Shazinoz), 20 March 2003
Rhea,
I think that for marfans there is actually a biopsy that needs to be done to rule it OUT the same for VEDS (not the others) and this should be done to rule them uot for good. As too the EDS doesn't cause this much pain and disability . I am sorry but the answer to that is CR@P. I to DO NOT have stretchy skin, but DO have HEDS. THe skin sretchy is mre commn in CEDS and even then it is ONLY one of many in the list of symptms, and you DON'T haveto have all to have EDS. You also DON'T have to Dislocate to have EDS or HMS. SOme do and some don't, I do dislocate but have NEVER been to hospital or sought medical help to relocate ANY of them.
So by your doctors thought I too don't have HEDS.
Hypermobility doesn't need to be EXTREME to have HEDS/EDS or HMS, this is a falacy and NOT true.
Us dd bods can lose the ability to do the beighton score particularly with age and after injuries, I can no longer put my right thumb to my wrist after tearing the ligamants in my thumb and wrist but It is still cunted by the geneticits because I could in the past.
You really need to contact CEDA,a s they shoould know who is best to see in your area to get a true and definative diagnosis once and for all.
You seem to be going throough all of the garbage I went through as a child and teen. This sux , it took me 30 years to get a doctor to listen to me and my symptoms and FINALLY get a diagnosis. I can't make my joints (most of them) pop oout at will, but they seem to go out when they like <typical> but I am still believed (now, thank goodness).
Sharon
Posted by rhea (rhea), 22 March 2003
Thanks AC and Stacey for your concern. I don't want anyone other than Dr. Fowler to do my scope as I know he will do the best that can be done and that what he says goes. The other drs. I saw at sick kids had the nerve to imply that he was just doing scopes for the money. Hmm...yeh right! Anyways, I'm not going to take that chance of ending up with a sub standard OS (I've met 3 of them thus far) and anyways I don't think anyone would do a scope on me right now until I get my muscles strengthened. I would make an appt. with dr. fowler but it would not change anything. They aren't sure what exactly is wrong yet until they do the scope, and they are so backed up right now unless my leg is severed and bleeding they can't move my scope up any sooner. Yes it sucks, but at this point I am just greatful that someone has agreed to scope out my blasted knee.
Thank you Shaz for sharing all of your info! Wow, we have so much in common! I'm going to email you so we can talk further. Although an "official" definite "yes you have HMS" would be nice, I don't think I will be getting it. I've seen so many docs. I am worn out and so are my parents. And anyhow, after being to sickkids there is no way a doctor would ever reffer me to another specialist for a second opinion. And to be honest my parents would skin me alive if I said I wanted to see another geneticist. And in the long run having a definite diagnosis for the joint problems doesn't change anything as its not like there is a cure for any of it. So I have come to the conclusion based on my rheumy's suspecions, the confirmation that I am hypermobile to a degree from the docs at sick kids(despite the incorrect report), and based on hypermobility.org's brighton criteria that I have HMS. So now I'm going to try to carve out some sort of life for myself. I'm investigating finishing my schooling through correspondence courses because there is no way I can attend school or keep up with the work in this state. Here is to trying to have a life that isn't dominated by HMS.
Byes for now!
(((hugs)))
rhea
ps, AC! Stacey! What happened to spring? My city's gotten seven inches of snow in the last three hours and its still coming down hard!
Posted by SL99 (SL99), 22 March 2003
Hi Rhea,
I don't know whether it's any help or not, but I am so proud of the way you are handling all of this. Your desicion to face the HMS/Chronic pain syndrome and make the most of the situation you find yourself in is both admirable and courageous, and that's speaking as someone who has faced similar issues. I know how hard it is and the strength of character that takes. Good luck darl and I really hope that the rehab team can help make it easier for you to put the peices back together and carve your future - I'm sure you will be sucessful at whatever you do though Sweetie.
I really hope that you can get sorted with the scope soon though as your HMS issue in the knee might at leats be manageable with apropraite care, therapy and/or surgery. I would certainly be making a few calls to see whats happening and attempt to move things along quicker.
By the way, just a side issue - sadly there isn't a specific test for Marfan Syndrome it is diagnosed purely on symptoms, manifestations and presentation etc. There are some tests for different types of EDS, for instance a few show up in skin biospies, but again on the whole it is diagnosed off the basis of test/consultaion results, symptoms, presentantion plus medical and family history. That is probably why the Dr's at the hospital were able to rule them out in your case Rhea using those factors to decide your liklehood of having either conditions.
Anyway, take care Sweetie and remember I'm here for you if you need me and will offer support and hugs every step of whatever way you find yourself on. 
Love and big hugs.....Jo
xxxx
Posted by rhea (rhea), 24 March 2003
Hi Jo,
Thanks for the compliments. You're very sweet hun... I think you are handling all of the awful stuff your body is putting you through remarkably. I don't think I would be able to tolerate such misery with dislocations without completely losing it at some poor ER doc.
I hope you are managing all right dealing with the loss of your Grandfather. I know right now is extremely tough for you. I lost my great Aunt to bone cancer ten years ago and the hurt is still there. If you need to vent or cry or just type out your thoughts to someone I'm always here for you.
I've realized this past weekend just how off base my Mom is about what day to day life is like for me. She knows I have awful knee pain, so extreme at times she wants to drag me to the ER for a shot, but she has no clue at what an impact the "other stuff" has on me. I wish I knew of some way to convey just how terrible the pain in my other joints (specifically the hips and spine) gets and how the fatigue and weakness coupled with the pain makes such simple activities like getting dressed or making some toast a tremendous effort. She often nags me about being to slow in the shower or getting dressed and I try to explain to her why things take me longer to do, but I know she really does not have much of a clue. I guess the only way for someone to officially 'get' how challenging daily living in such bodies is, they would have to experience it first hand. How do you manage to get across to people how debilitating this is? I'd love any suggestions at all.
Well I have babbled on enough.... I'll email you in the morning (well err... later in the morning that is seeing as its 1.30am. 
)
(((hugs))) n' healing
rhea
Posted by Femin3m (Femin3m), 2 August 2003
im fed up with going up the hospital! im only 15 and every one in the emergency room knows my name it feels like cheers!!! when i go uo there everyones goes "what have you dislocated now?" and its costing my mum in petrol 
and it just really hurts
Updated Sun Sep 7 2008