By Angie on Sunday, June 04, 2000 - 04:50 pm:

Wow! I'm going to have to tell my physical therapist. I have problems with chronic pain due to back problems. My chiropractor complains that I don't "hold my
adjustments." Went to a P.T. and he said I was hypermobile. He's been giving me strengthening exercises that I hate but do faithfully, since being out of pain is a
significant motivator.

By Rhenda on Sunday, June 04, 2000 - 04:51 pm:

Angie, I am also hypermobile, but have been going to a chiropractor for 27 years. I do not hold my adjustments well anymore, but have found an osteopath that
does prolotherapy. This therapy states that the pain is caused by the ligaments and tendons being stretched and lax. See the comments here on prolotherapy. It
works. If you can get the referral to the osteopath that does it, your insurance company should pay for it. I would have paid even if they don't, it's that good. I only
wish I'd heard of this sooner. Good luck!!

By Angie on Sunday, June 04, 2000 - 04:51 pm:

I had wondered that about the chiropractor as well. I mentioned it to the PT, but he said he thought the chiro was valuable. Actually, I'm having insurance co.
problems. They don't think the PT visits are that meaningful (they want me to do a "home exercise program" instead) and are trying to limit the number of visits. So
right now I am in a holding pattern

By john on Sunday, June 04, 2000 - 04:51 pm:

Angie
If the chiropractor is adjusting you then this is not necessarily helpful. In fact probably harmful. The home exercise program, if aimed at hypermobility, is the best that
you could do. The problem with this condition is that you need to be responsible for your own condition.

By ALI on Sunday, June 04, 2000 - 04:52 pm:

Hi Angie, Only discovered this forum a week ago myself and already found out a lot more information on this condition it is really good to talk to people who know
how you feel, feel free to email me anytime keep well. Ali

By Elle Elàn on Monday, October 30, 2000 - 12:18 pm:

I cried when I found this website. My familie doctor doesn't take my pain seriously because according to the osteo-specialist I am a borderline case. Well that doesn't make the pain any less I can asure you! But even though it's sad for all of you I am so glad I found others with the same pain because it means I'm not a cry-baby for I almost started to doubt myself!
Please feel free to mail me and I will try my best for some positive input in this board.

By Abigail on Monday, October 30, 2000 - 07:24 pm:

Elle,
I just found the hpyermobility bulletin board myself, and it affected me in just the same way. Hypermobility runs in my family; everyone can dislocate something or other, but I'm the only one who can put almost EVERYTHING out of the socket. No one else in my family really takes it seriously, because they're just double-jointed and it's fun. I'm almost always in pain because of something or another. I've been to all kinds of specialists and they always start off saying they're sure they can fix it, and then they're surprised when, oddly enough, the treatments just don't work, the joint doesn't strengthen, and the exercises are just hurting me instead. What is a "borderline case"? Maybe I'm one too. It seems like all my joints slip just enough to inflame all the muscles and tendons around them, but not enough to get me taken seriously.
Thanks for your input, it helps me to know someone's feeling the same thing.
Abigail

By Gwen on Tuesday, October 31, 2000 - 12:18 pm:

I think I must be borderline too. As a child I was always going over on my ankles and couldn't do gymnastics at school because my wrists would give way under me. My mobility is predominantly in my spine (can touch floor with flat hands, roll up and touch floor at back of my head with my toes, can W sit and lie flat back and can also touch my nose with my tongue) but I don't seem to have excessive movement in my other joints. A musculo-skeletal bod I saw recently said he thought I was "only" at the upper end of normal. However he couldn't explain why I have such sore joints in the absence of any obvious arthritic or other pathological conditions and why my joints click and crack and subluxate on such a regular basis. In the past I was diagnosed as having a hypermobility disorder by Julian Kirk who first described HMS as a clinical syndrome but even he said that it should improve with time as my joints naturally stiffened (which hasn't happened as even at 54 I am more flexible than my 20 year old daughter and her friends)
I don't really know what the solution is other than finding a sympathetic doctor and sticking with them. But it can take a lot of time and searching. Generally I have found rheumatologists to have the best knowledge of hypermobility and my physiotherapist is most supportive. As he says, he can feel what my joints are doing.
The most important thing is not to let well-meaning (or otherwise) family members or medical professionals undermine your confidence. At baseline you are the only expert at knowing what you feel. Others may have pieces of paper and explanations as to why they think you experience what you do, but only you can feel it and no-one else can possibly feel it for you.
Never ever let them persuade you that it's all psychological. Every pain has a cause and it's a poor indictment on any doctor who says it's due to "being depressed" or "attention seeking behaviour" etc. Basically what they are saying is they are too ignorant or can't be bothered to find out what is causing the pain you feel.

By Barbara on Sunday, January 14, 2001 - 05:00 pm:

I have found that Osteopathy works far better for me than Chiropractic. Depending on the technique used, typically Osteopathy is less jarring and more gradual than Chiropractic. Chiropractic forces the joint in place while Osteopathy encourages the body to return itself to proper alignment.

By Patty on Wednesday, January 17, 2001 - 04:41 pm:

My chiropractor has myotherapists working in his office right along with him. I finally told him the other day that they had done more to help my pain than he had. He was pleased to hear that something was working and not offended. The myotherapist works by massaging the muscles to release the knots and this has allowed my joints to stay aligned or move back into alignment themselves. My problem is that the muscles are so contracted to give stability that they actually pull the joints out - especially in my neck and SI. We don't have osteopaths in the Philippines.

By Sharon on Thursday, February 08, 2001 - 11:24 am:

Sorry if this is not the correct place to post, but I couldn't see how to start a new one!

Basically, I have tried so many things for pain relief over the past 17 years from Physio, Osteopathy, Chiropractic, many drugs, a TENS machine, reflexology, accupuncture, homeopathy to massage therapy without success. I am now trying to investigate non-invasive cognitive-behavioural forms such as visualisation etc. However, the main chronic pain programmes seem to think that pain is really only a maladaptive behaviour and if we re-learned our responses and threw in a little relaxation - well, Bob's your uncle!

As the pain I have may be chronic, but also can be acute, and has explanations e.g. chondromalacia patellae, tendonitis, compressed ulnar nerve etc., and given that I refuse to be treated as some "victim" and give up (as the pain management materials suggest chronic painers do!), how can I find out about ways I can learn to control my pain?

I hope this makes sense. I'm just annoyed as I had such high hopes for pain management until I bought tapes and a book and spoke to a colleague who is a psychologist in pain management!

By Heather on Saturday, February 10, 2001 - 04:21 pm:

Hi Sharon! It sounds like you have already started on your journey towards learning to cope with your chronic pain! You are a fighter, and believe me, you have to be in order to survive! I sympathise with you-i have had pain since I was 13, and have had som many different sorts of treatment. I have PT twice weekly at the moments, as well as celebrex, co-proxamol tablets and amitryptiline. But the thing I need most is sleep, rest and the ability to manage my pain. i have learnt over many yeras how to handle the pain: in fact, a doctor I saw recently for a medical assessment for compensation after a car accident couldn't believe I was still working! I am a professional violinist in the City Of Birmingham Symphony orchestra here in the UK, and have been in the orchestra for 11 years now, which is amazing because I was told I would never be able to play professionally, and that i would be in a wheelchair by the time I was 30. I am now 40, and they have ben qwrong on boith counts! I am not saying i don't find things hard: I do, and i have good and bad days. But I think that anything which helps you with positive thinking, (not being unrealistic and pretending you are fine!)must be a good thing. Our minds are amazing things, and we need to use our strong wills to good effect! Keep fighting, but also be realistic about what you can and cannot do: allow yourself room to fail sometimes, and to not cope sometimes! Be nice to yourself, and have strategies to help when the coping mechanisms fail. I have a library of silly jokes/quotes/stories taken off the web to make me laugh when I feel really down. I also keep a stock of silly videos to watch when I can't sleep. I have discovered I have a very whacky sense of humour! But you also need the love and support of friends/family: people who will laugh with you, cry with you, hurt with you etc, and above accept and love you for who and what you are, inclusive of your pain!

Hope this helps, but do keep us posted on how you get on.

By louise on Sunday, May 20, 2001 - 05:16 am:

I've just found this forum myself and have posted a message on braces. It's good to hear that someone else has, what has always been 'fondly' known as mobile ankles by my mother. But up until today, i didn't even know what this condition was called. I would also like to say that reading most of these cases makes me realise how lucky i am to suffer from relatively no pain. Sometimes i pull my ankles when i run and sometimes suffer from sharp pains when i walk. You're all very brave. I am also wondering if the stiffness in my fingers and occasional sharp pains in my arms could be related to hypermobility.

By Ruth on Monday, July 23, 2001 - 01:19 pm:

Hi, I'm just amazed to find this forum. I can relate so much to most comments on all of the sites. Does anyone have trouble walking due to feeling that their hip joint will snap out of place. I have been "very double jointed" all my life (fingers can almost tie in knots, hands have no problem cleaning smallest of jars, shoulders can go in and out at will, touge to tip of nose, bottom of feet to top of forhead, skin very elastic, too). I began hurting in high school, so much so, that my friends' grandparents would give me their vibrating recliners to try to help. My EDS was not diagnosed until 3 years ago at 51 when I saw a doctor for my migraines. Then I fell at work. I further overstretched joints that will never go back. Now the pain is really constant and none of the medications anyone mentioned have helped much. I think pool exercise is probably the best, but you can't live in the pool. Sometimes a walker, with wheels so I can push down and let it bear some weight, helps. But wheel chairs are out. My back feels every little bump or crack in the pavement like it is maginified. I feel like I am a contridiction of terms. In so many ways, I am hyper limber and yet I hurt from holding my musles tight and stiff. The doctor who diagnosed the EDS moved away and I have not found one who understands. The last one I saw thought antidepressants were the answer!!

Also, does anyone notice that this or maybe certain types of EDS seem to pass from father to daughter and mother to son? I think my father had it and his mother. I think I have passed it on to my son and not my daughter. Now my son's daughter has been diagnosed at age 1 with "over flexable hips"! while my daughter's children appear normal.

My pets, My husband and My grandchildren's laughter are the best medicine. Even if they don't have a clue, they are what keep me going.

By Lin on Monday, July 23, 2001 - 09:06 pm:

the contradiction makes sense, your ligaments are hypermobile, so your muscles work over time to keep joints in place which makes them sore, and tight. Alot of times the muscles in my back get so tight and sore they spasm, and that is painful!! when i am at my hypermobile state i am all over the place, when i am sore from being at my hypermobile state i am all stiff and tight and can barely move some joints because of the pain.
Lin

By Emma F on Wednesday, July 25, 2001 - 03:54 am:

Hiya Ruth

I too have trouble when walking too far, or if I am having a "worse day". I am 22, and have been having pain since about 15. The feeling is like your hip is not quite in its place, so it has tremendous pain when stepping onto it. As if it will pop out if you put too much weight on it.

I was put onto anti-depressants about 6 months ago, something I wasn't happy about at first, (you kinda don't want to admit that it does depress you). But my doc explained that these certain ones interfere with the pain stem that goes towards my brain, to tell it I have pain. Therefore telling my brain I had less pain than I probably did.

I was only to take them at nite, due to dizziness, can't operate machinery, e.t.c but they encouraged a wonderful nights sleep. Obviously taken in the day would risk me overusing my joints, and not feeling the pain..... causing more wear on the already worn joints.

So check with your doc first, they may help but only take anything if you are 100% sure.

Other than that I wish you well

By Ruth L. on Wednesday, July 25, 2001 - 11:55 am:

Thank you Emma F. Hadn't thought of it that way. Guess I was just feeling put off again by another doc. Think what got to me was when he laughed at me, saying things like "you want to feel better don't you" and "take these anti-depressentants and excercise and you'll be fine". I know the pain gets me down and they do feed each other (the pain and the depression) but don't think I was depressed to start with. Can you tell me which anti-depressant is working best for you. I was on Effexor 37.5mg twice a day and they were making me anxious and jittery. Your suggestion to take at night makes sense. Any info from anyone will be appreciated. Hoping everyone is having a good day. Mine's better today.

By Gwen on Wednesday, July 25, 2001 - 03:01 pm:

Amitryptylline is the anti-depressant most
commonly used for pain. It is prescribed in much
lower doses than would be for depression, about
30mgm at night. Prozac is also said to have an
effect on pain because it is a SSRI (Selective
Seratonin Reuptake Inhibitor) Seratonin is the
'feel good' chemical your brain releases. However
when I was on Prozac for depression I never
noticed any decrease in pain levels.

By Emma F on Monday, July 30, 2001 - 02:38 am:

Ruth, Gwen has hit the nail on the head! Amitryptylline is the anti-depressant I was prescribed. It helped well and I got a good nites sleep and felt better fot it in the morning. I was only on 10mg a nite, my mum was on 25mg. She does experience more pain than I. I am not sure if you're in the UK, if not it could be worth surfing the net to find out if this relates to a drug in your country.

hope this helps you Ruth as much as possible

By Sharon on Monday, July 30, 2001 - 05:14 pm:

Ruth and Gwen Amitryptaline is also the name of the drug here in Australia.
Hope this helps others out there
Sharon

By Ruth Clapman on Saturday, January 12, 2002 - 12:22 pm:

Hi there, I have had back fussion on all my lumbar spine about 12 years ago with great success. unfortunatly over the years the rest of my spine degenerated and lack of muscels in the lower back makes walking uncomfurtabel. further more my knees have lost their cartilages this troubles me less than that the ligaments that support the knee have lost there elasticity and there ability to support properly the knee. I do aqua exersices and other wxercises but it does not help. Any suggestions ? please!

By elizabeth hunn on Sunday, February 10, 2002 - 04:51 pm:

G'day there, since my last pregnancy (11 Years ago) I have constantly had problems with a joint somewhere or other, mainly in my sacro iliac, but also in thoracic region, neck , shoulders etc etc. Shocking spasms and inflammatory responses caused by the activity or movement that set it off. I have tried almost everything with most success coming from a select few osteopaths. For the last 6 months I have put myself on the "eat Right for your Type" diet. It has not taken away my extremely "clunky "SI joint but it has certainly reduced the inflammatory responses all over my body. I have not had any other joint problem in that time, which is extraordinary.

By Stefanie J on Monday, September 09, 2002 - 06:59 am:

Whoa. I've just been reading all the posts here because I was told a while ago that I have EDS. I didn't really think much of it because I had no idea what it was. All I knew was that I injure my joints very easily. I'm just shocked that there's so many people out there with the same problem. My problem is mainly in my hips, elbows and feet. Sorry I didn't take note of who said it, but that feeling they get where their hip feels like it will pop out is EXACTLY the feeling I have all the time. I'll be sitting down and then try to get up and walk and it's absolutely excruciating. I'll have to stand on the spot for a moment until it goes back into place after some twisting around. Sorry, I'm rambling a lot, but I haven't really had a chance to talk about this. It's something that people don't seem to take seriously, because they don't seem to realise how much pain it can cause.

By Glenda on Thursday, September 12, 2002 - 03:54 pm:

I have been reading these postings and have been amazed at how much of it I can relate to. All my life I have had trouble with spraning and dislocted my joints and I was born with scoliosis. I'm also nearsighted and have hearing problems. I react strange to meditations, have pour circulation, and recently discovered I have cysists in my liver and right kidney. I have trouble thinking clearly and remembering things. I have been in constant pain due to injuries that have occured in the past 6 years. The worst is my shoulders and ribs. They have been dislocated and will not stay in place. I have been to several doctors, none of which know what to do for me. The only ones that have even tried are chiropractors and massage theropists. How ever after they treat me for about a year they get frustrated and say they don't know why I'm not improving more and that they don't know what else to do for me. I have been diagnosed with TMJ and Fibromyalgia, but so far I have not found any medical facility that is my other health problems. After finding this website and others I began wondering if I had hypermobility. So far I have not found ony one in the medical or naturepathic field hear that are familuar with it. Unfortunitly I live in a small city. I did fly to a large city to see an internal medicine doctor and he said I might have Ehlers-Danlos but that he couldn't help me and sugested that I go to a chiroprator and massage theropists. So I did, I completed a years worth of treatments in less than seven months, and now they don't know what to do for me. I am in so much pain that sometime it causes me to faint. I am very limited on what I can do. I am finding it difficult to function, having trouble taking care of my family and work full time. I would appreciate any advice.

By Hamfist on Friday, September 13, 2002 - 12:05 am:

Glenda,

I will give a little summary! If the tendons and ligaments surrounding joints allow a wider range of motion than is usual a person is hyper mobile and may be called “double jointed” by friends. There are many people with hyper mobile joints and they go through life like this without any problems. But if the hyper mobile joints cause problems such as frequent pain or joint dislocation the person may have Hyper Mobility Syndrome (HMS). Living with HMS can be a major effect in terms of pain and mobility problems. However, if the hyper mobile person has more than joint problems they may have Ehlers Danlos Syndrome (EDS). This is the important difference! Various forms of EDS have hyper mobility as a characteristic and EDS III certainly has this but will also have skin stretch or other major problems. With the condition, various categories given to the problem tend to be simplistic in definition but there is much overlap in symptoms.

It is almost always the case that a person with EDS/HMS has a parent that also has the situation. In other words it is a genetic thing. If you are really loose in all of your joints (including your back) and lack strength and co ordination I can tell you that this is quite common in hyper mobiles. As well, because a joint itself is hyper mobile, the surrounding muscles have to work much harder to control the joint. For that reason it is vital for a hyper mobile to retain very good muscle tone and not be over weight. But, the most important item for a hyper mobile person is to avoid any form of exercise that is jarring as running, aerobics and this sort of jarring exercise can be a disaster for your joints.

You may mail me if you like - Ian

By Glenda on Thursday, September 19, 2002 - 11:41 am:

I am having trouble posting a message. I posted one on September 12. It is on here and Ian replied to it, which I really appreciate. But yesturday I wrote a message back to Ian. I justed checked the messages and the one I wrote yesturday is not on here. Did I do something wrong? I did it the same way I did my first one, by selecting 'Last Week' under 'Discussion' and then typing it where it says to 'Add a Message'. I have been reading message on the website for several weeks and on September 12 I just wanted to read the newest messages.That is why I selected 'Last Week'. After reading them I decided to post a message so I typed one in the place that said 'Add a Message'. Is there a better way to post messages?