Ehlers Danlos Syndrome

Question: Does anyone else have Ehlers-Danlos Syndrome? What do you do for the pain once Vicodin no longer helps?

Answer: Ehlers-Danlos Syndrome (EDS) (also known as "Cutis hyperelastica") is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (a protein in connective tissue). Connective tissue helps support the skin, muscles, ligaments and organs of the body. Depending on the individual mutation, the severity of the syndrome can vary from mild to life-threatening. There is no known cure. Treatment is supportive. Pain relief if it is narcotics your on and Vicodin does NOT work there are still a few meds you could try before being placed on the big guns like Morphine and Diluadid and Fenantyl. These includre; Burprenorphine Patches that are Slow release 1 patch per week giving 10,20 or 30mcg/ per hour release, these are usually the least addictive or the high end Opiates. They are stronger than Methadone and usually used to get people off Opiates but are used for pain relief, I would suggest trying this before you move onto Oxycontin. Lets face it pills are annoying at times, I would also use Deep Heat because this is affective for musclular pains. It is a gel and it is avaliable without prescription. I used to use Buprenorphine 20mcg/per hour patches, but here in the UK London, Dr's are unsympathetic towards chronic pain patients and this never worked for me personally but it does for many people, my Dr refuses to give me stronger pain killers citing my age as an excuse im 24 on the 18th of this month. Plus Hydorocodone (Vicodin/ Lortab) is NEVER used in the UK.

Question: Ehlers-Danlos syndrome? I have been experiencing pains in my joints(elbows, wrists, knees)and i am beggining worry about my situation. My wrists always 'pop' when I roll them out(my doctor said that this is just because of the flexibility in my wrists) and sometimes it feels like i have hyperextended my eblows and the pain is rather awful. I am currently taking boxing and I do not want to give that up at all. I have not been taking vitamins or anything like that yet, but I am going to start right away. Does this sound like Ehlers-Danlos syndrome?

Answer: no i dont think so cause poeple with this syndrome have abnormal function of the plateltes inthere blood so they bleed easily ,,

Question: I have Ehlers Danlos syndrome, which has made it difficult to heal body piercings in the past.? Now I'm having trouble with urethral irritation with my Prince Albert. I'm fairly certain that it's a jewellery problem, and am about to stretch it to about an 8g, with a curved barbell instead of a ring. Any thoughts?

Answer: Sounds delightful..... Why you doing this to yourself?!

Question: EHLERS-DANLOS HYPERMOBILITY SYNDROME/ HYPERMOBILITY SYNDRoME!? So tonight I was talking to a friend who has a severe form of Ehlers-Danlos Syndrome....and she saw the way that my joints are, and how "flexible" I am and how strechy my skin is. So she commented on the possibility of me being a hypermobile. I went to the HMS website and got 9/9 on the beighton[sp?] test. [that consisted of me seeing if I could extend my elbows and knees beyond what was considered normal, pulling my fingers back, touching the floor with my palms [without bending my knees], etc...] 5 out of 7 days of the week, I experience joint pain [in my back, knees, fingers] I just told my aunt [who is a nurse] about it, and she shrugged it off saying "All the women in our family can do that". Which is funny because It's HEREDITARY. so...any doctors out there that can confirm or dismiss my suspicions? what should I do?

Answer: Glad to report I am not a Doctor. I have Rheumatoid Arthritis and at the young age of 49 have just been told I have Hypermobility, but late than never I suppose. I guess the same rules apply and that is joint protection. In other words if you have this flexibility do not over extend the joints otherwise you will get painful joints. If you are worried then consult a Doctor.

Question: Ehlers danlos syndrome complications? On april 3rd, I was diagnosed as having ehlers danlos syndrome, classical type. I was having symptoms ranging from gastrointestinal complaints, urinary complaints, muscle aches, fatigue, etc... Anyway, my question is, can ehlers danlos affect your urinary tract? Because, I get symptoms similar to a uti off and on. Like burning/stinging whenever I urinate, and an increased frequency/urgency. Like I said, this happens off and on/intermittent. I had a urine sample done, but they couldn't find anything. I also have fatty stools, constipation, diarrhea, mucus, intermittent abdominal cramps, clothes are slightly looser (but the scale says I weigh the same), smallish potbelly (have had one since I was little), rotten egg burps, vomiting eipsode and dizzy spells (have had these since I was little too), low blood pressure, intermittent joint and body aches, intermittent fatigue, etc...My celiac levels were slightly elevated as was my WBC count. I have an appt with a G.I. doc on 4/24. * 8 minutes ago * - 3 days left to answer. Additional Details 8 minutes ago I also get horrible acid reflux constantly, and when I do, I also get this nasty gurgling sound in my throat. It's so weird! He wanted me to have an endoscopy and a colonoscopy, but I'm paranoid about the tools being unsterilized. Anyway, my regular doctor (who is also a geneticist), who also diagnosed me, also wants me to have an x-ray done of my cervical, lumbar, and thoracic spine and a gastric emptying scan because she suspects degenerative disc disease and gastroparesis. My G.I. doctor doesn't really suspect celiac since the levels weren't extremely high or anything, but he wants to have an endoscopy done done just to make sure. 7 minutes ago Question: Can EDS cause all these symptoms? Or do you think there's something else going on too, like celiac or DDD? Should I get an endoscopy done? Has anyone on here ever caught anything from unsterilized endoscopic tools? Sorry for all the questions. Thanks for the help! 5 minutes ago I heard somewhere that a high white blood cell count can also come frome tissue damage. Well, EDS involves tissue, so, I don't know. It wasn't very high though. Something like 10.9 Thanks again!

Answer: Ehlers-Danlos Syndrome is a very rare hereditary connective tissue disorder that results in very elastic skin, fragile tissue and flexible joints. Because of the fragile tissue, patients tend to bleed easily (including internal organs). This could be the cause of your high WBC count. These gastrointestinal disorders you are describing may be caused by something else. You should get the colonoscopy and endoscopy. I've had them both done and they're not that bad! You are given medication so you won't even remember it!

Question: Can Ehlers Danlos Syndrome cause heavy periods? I'm 16 and have Ehlers Danlos Syndrome. I'm underweight - I'm 5"6 and weight 6 stone 11. I started my periods last year, and they are always, without fail, really really really heavy. It completely wrecks my week or two when I'm on my period. It's all I think about. I use a sanitary towel because I can't get to grips with using tampons yet. Basically, this is what I was thinking: Ehlers Danlos causes me to bleed alot alot alot from just the smallest of cuts, and once somewhere starts bleeding, it just won't stop! So I was thinking, could this be related to my heavy periods? Or does this make no sense at all because periods have nothing to do with lack of collagen, it's all just about your ovaries and stuff ? Adverts lie - there's an advert that says 'Have a happy period' - what's one of those?! I really hope someone could help! Thankyou! :)

Answer: Hi there - head over to the Ehlers Danlos National Foundation. They have some online info and also a paid member forum. The forum also has a Teens With EDS. www.ednf.org Hope this helps!

Question: Ehlers Danlos Syndrome EDS? Ok So I Have This Rare Disorder Called Ehlers Danlos Syndrome (EDS) Jus Wondering How Many People GThere Are With It? And How Many Of YOu Have It Affecting Your Joints AND Stomach, Intestines Etc As My Doctor Says He Only Knows One Other Person Like Me I Have To Use Crutches To Walk As I Have Really Strechy Ligaments And Injure Myself Easily, Also I Get Really Bad Pain In All My Joins (Knees, Elbows, Wrists, Hips, Ankles) But For Some Reason It Afects My Insides Badly. I Had Been Having Symptoms Of Really Bad Bloating (To The Point Of Looking 28 Weeks Pregnant!) Pain On Eating, Sickness After Eating, Really Bad Constipation And Only Going For A Wee Once A Day Turns Out 4 Years Later That Its EDS And When I Eat (Or When My Bladder Fills Up) My Actual Stomach Just Streches And Streches And Streches, So Instead Of Being Like A Muscle That Pushes Food Through Its Just A "Big Saggey Sack" As My Doctor Calls It And It Actually Pushes Up On My Lungs I Have Had An ACE In The Past (Antegrade Colonic Enema) With Is A Opening Made In Your Stomach With Your Appendix (a small stoma) That You Push Liquid Through To Go to The Loo. And Currently Have A PEGJ Wich Is A Tube Into My Stomach And Jedunam (however you spell it!) In The Past I Have Had Botox Injections In My Gullet Due To Swallowing Difficulties Any Info Apprieciated!!!! PS-- Im 16 And Had Symptoms For 6 Years, Only Found Out What It Was Last Year

Answer: Julia C, There are several types of EDS. They can range from mild to life-threatening. There is no cure. Treatment involves managing symptoms. It also includes learning how to protect your joints and prevent injuries. I will add some links that may be of interest and assistance, below. It is likely that your doctor and personnel at the last two links will have information to answer any questions that you may wish to ask. I wish you well. ALL ANSWERS SHOULD BE THOROUGHLY RESEARCHED, IN ANY FORUM - AND ESPECIALLY IN THIS ONE. - MANY ANSWERS ARE FLAWED. It is extremely important to obtain an accurate diagnosis before trying to find a cure. Many diseases and conditions share common symptoms. The information provided here should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. These are the links mentioned above. http://en.wikipedia.org/wiki/ Ehlers-Danlos_syndrome This for the support group http://www.ehlers-danlos.org/ This for the national foundation http://www.ednf.org/ Hope this helps matador 89

Question: EHLERS DANLOS SYNDROME and FATIGUE? Hello...I have Ehlers Danlos Syndrome (marfanoid habitus possible vascular type crossover). Recently, finally and AT LAST diagnosed in the last year. MY question is about FATIGUE; this huge tiredness that dogs me. I'm 48 years old now, and I know that at this age the body creates less and less collagen anyway...so it is feeling more and more exhausting to basically stay upright and "held together". A specialist told me FATIGUE IS ALLOWED, as basically it's a symptom of the body having to work extra hard to walk, sit up, move etc. My question is. HOW TO BE with this fatigue? The more I rest, it doesn't really seem to help. I get more achy. Is it best to push through the tiredness and completely exhaust myself? I don't know how to be with it. I feel if I stop moving, I will stop altogether...I have in mind the "energy begets energy" way of being. Yet often I'm SO TIRED I can't even think or do anything or even answer the telephone. I have NO TROUBLE sleeping. Any top tips? mim

Answer: I, too have EDS, and totally understand where you are coming from. Unfortunately, much of my family has EDS, and fatigue is one of our most common symptoms. To be quite honest, I still struggle with managing the fatigue, and I am merely 22 years old, and have had this diagnosis for a couple of years now. For awhile I tried keeping a rigid schedule, figuring that if I got my body on a regulated clock it would help. It didn't. I still felt like my body was twice as heavy as it was, and still felt like collapsing at random points throughout the day. As such, my best advice for you is to find rest when you need it. I follow a schedule as much as I can, but there are just some days (like today) when I allow myself to sleep in until noon, because I just CAN'T get up. Another thing to do is some like muscle/strength training to build up your joints; this will help you feel "more together". It's certainly hard explaining EDS to others, because it does sound quite bizarre, but there's plenty of us out there, and we're in the same boat. Don't give up hope; just learn to pay attention to what your body is telling you, and don't feel guilty about needing more rest - we ALL do.

Question: Ehlers Danlos Syndrome? I have Ehlers Danlos Syndrome it causes me to have weak joints so i cant participate in school sports which i love causes me to be in constant pain and I've analyzed my personaility because i want to be a psychologist and i have realized that it causes me to be very insecure, untrusting, have a need for hugs and affection which causes warmth which helps with the pain, i have also noticed that i try to mask the pain i feel daily simply because i am so insecure and fear what others would think of me it also makes it very hard to think so im keeping about a 80 average at the moment.... this was simply for venting and needing someone to share with :/

Answer: You are definitely not alone. I'm not sure how old you are or where you are living, but I am a mother of 2 teenagers and all 3 of us have EDS hypermobile type. My daughter is always looking to chat with other teenagers in the same situation. There is a lot of information out there that can also help, Yahoo Groups has a couple for EDS and there is also the national foundation, ednf.org. Feel free to contact me if you would like some one to talk to. :)

Question: do I have ehlers-danlos syndrome? My physio said I have a heriditary illness to do with being double jointed. When I looked this up there was a link to ehlers-danlos syndrome. The symptoms I have are in line with this condition. http://en.wikipedia.org/wiki/Hypermobility Out of the symptoms listed there. I have had joint instability, internal bruising sometimes, whiplash, shoulder dislocations, a thyroid problem, a stomach ulcer, fallen arches, knee problems, panic attacks, internal bruising, headaches, carpel tunnel syndrome and palpitations. She just said double jointed syndrome, so do I have this other syndrome too or instead? or what else could it be?

Answer: ot.her then the double jointedness you don't fit into the Classic Type 3 EDS, but as they LOVE to change the different symptoms for the other 5 or so types I don't want to say no. I want you to call Cindy Lauren at the Ehlers Danlos headquarters, on Wilshire Blvd, in LA. I don't have the phone number right here as I just moved and am in total disarray. You may tell her that Deborah in NYC told you to call. She will be able to talk to you, if she is around, and if not, at least one of the people there will be able to send you all the material on each one of the types and the symptoms and you can see if you fit in anywhere. If you believe you do, please make an appointment with a Rhumetologist and a neurologist in your area to start talking to them about what can be done to keep the disease under control as you get older