By Hilary on Saturday, June 03, 2000 - 03:34 am:

It's great to to be able to read that I am not alone with this problem. I apologise for being so negative this evening but I am in so much pain. Does anyone else suffer
from the problem that on the outside you look normal because you try to hide the pain and get on with your life but no one appreciates that it's really hard to remain
positive and happy when you can't do all the things you would like to do? I have problems with the sacroilliac joint, knees and neck and shoulders and have learnt
that others with no problems cannot cope with your pain so I try to hide it. I'm alone tonight, fed up and in pain. Please cheer me up!! There must be some future for
us all.

Best wishes from the UK.

By Beth on Saturday, June 03, 2000 - 03:34 am:

Do I ever. But in time I have learned new methods to deal with it. I tried the suicide thing and it didn't work.

By Odds on Saturday, June 03, 2000 - 03:34 am:

Hi Hilary,
Sorry to hear you feel so bad at the moment.
I can understand Katies reaction and do feel sorry for her.
But on the other hand, this is again the fight we for one moment don't wanna make on this forum.

Ofcorse there are people who's condition is worse, like Katie. But I do understand there are different circumstances for everyone. There will probably be lots of
people on this planet that are even worse of then all of us. But some times you just need to feel depressed to come out stronger then before.Here everyone shares a
little of your pain, some more, some less. And yes it is difficult to share your pain with your friends and family, all this explanation and trying to keep strong...Hey,
no imidiate prozac or whatever, maybe let it flow for a little while and just write about it, like on this forum.
Treat yourself to a sunbench or a little gift might even help.Do feel sorry for yourself for a moment. Feel lonely and even cry, don't keep it in there...!Anything else
will frustrate you more in the end.I've been there and I still am lots of times, but we're only human...with bad luck maybe...eventhough indeed it could be
worse.Take your time for it and yes, let people know how you feel, you can do that in a certain way, not complaining, but just talking.Hang in there !!!

By Greg on Saturday, June 03, 2000 - 03:35 am:

Hilary,

I'm sorry to hear you are in such pain. As stated in the above posting, depression is all a part of this thing. Depression can make the pain feel a lot worse, BUT
DOES NOT actually make the pain in the first place. I was depressed from ages 13-18 until I found this webpage, cuz I thought i was the only one in the world with
this problem.
Being a guy, I typically have been looked at as "weak" because of this. I don't even try to explain it to my friends or anyone anymore. They just don't understand. I've
only had one very good friend who kinda understood because she has a bad knee, and I told her to just imagine that pain in all of your joints, all the time. Basically,
nobody does get it cuz it seems too far-fetched to them. I stil get called a hypochondriac all the time. Screw them I say, the moment someone pisses me off about my
pain, I just don't talk to them until they humbley apologize.
I'm not sure this will make you feel any better, but it's just a little advice on how to deal with people. I hope there is at least one person who listens to you, because
that one person who listened to me has made such a difference in my life. Good luck ! =)

Greg

By Robyn on Saturday, June 03, 2000 - 03:35 am:

I agree with Odds!!!! It's good to have a boo hoo day once
in a while. I had mine today. I even spent $20 to go to my
docs so I could cry on her shoulders. I still feel alittle down
but I feel much better. I also agree it's hard to share or make
family members understand how we feel. Most of the time I don't even
tell them when I'm in pain. Don't know why but it seems easier to tell
a friend or a total stranger!!!!!!! Go figure!!! Try to remember the Son will
be out tomorrow!!!!!! Cheer up!!! Take Care and E-mail me anytime,Robyn

By Karen on Saturday, June 03, 2000 - 03:36 am:

Greg,

I just discovered this bulletin board yesterday (and just learned this week that HS is the cause of hip and back pain I've had for nearly 5 years), and it truly does ease
the burden to read the accounts of others who suffer with this problem. Your post really hit home with me. I am in pain much of the time, and friends and
coworkers do not understand, and seem to think I'm making it up! When you wrote that you often just give up trying to describe the situation, and leave it to others'
ignorance, I felt like I was reading about myself!
Unfortunately, taking this approach makes social interactions very difficult, and ends up being a vicious cycle, because it's hard to be cheerful when the pain is so
intrusive.

I'll be checking this board in the future for emotional support.

Thanks for letting me share some thoughts!

Karen

By Katie on Saturday, June 03, 2000 - 03:36 am:

I've been diagnosed with HMS for only 2 years, but have been suffering with it for 9. I have problems in every joint, including my jaw (severe enough that some
times I can't open my mouth at all, or once open can't close it), my hips dislocate, as does my pelvis, occasionally making it impossible to feel my legs, let alone
move them.

To top it all off, 3 weeks ago I was diagnosed with Crohn's disease, yet another life-long illness for me to deal with. I've been suffering with it for a year now, and
have been through every test in the book. I've been scarred permanently from my last test, right in the middle of my stomach (not an easy place to hide when you're
20!). I'm on a strict diet at the moment, but may be switched to liquids only if it doesn't work.

I've had to drop out of college for the year, I'm too sick to work, so I spend my days at home, never more than 20 feet from the bathroom. It really makes you
appreciate the days when all you had was a little joint pain! I realise that for most HMS sufferers, "little" pain is the complete opposite of how they feel.

Still...no matter how bad I feel, I am grateful for the fact that I am not in the hospital, I have people who will support me through this, and that one day I'll feel up to
getting back to my life. I don't have a life-threatening condition, but I've learned that quality of life is a subjective thing, and while some days are better than others,
they are still days when I'm alive.

This may be all preachy, and I don't want that, but things could be worse.

By Gwen on Saturday, June 03, 2000 - 03:36 am:

YES, YES, YES. Depression is a very big component of chronic pain. Who wouldn't be depressed! Meet someone who is popping Prozac to keep on an even keel.
Can you talk to your doctor? Certain anti-depressants have the potential to relieve pain, particularly Amytriptyine and the SSRIs such as Prozac and Paroxetine. For
most of us there is no magic cure but there are some very good pain clinics where you can learn techniques to help control the pain and set priorities in your life.
Unfortunately chronic pain can have a devastating impact and certainly restricts activities but it is a case of deciding what is important in your life, doing those
things and ditching the others. I sometimes suspect that we try too hard and overcompensate for our pain. As you say, people get sick of hearing about it. Many
reasons for this. Partly sheer frustration that they can't do anything for you. I have found with my family that I need to be very specific and say such things as,"My
joints hurt today and I'm going to lie down." or "Can you cook dinner because I'm too sore to stand long enough to do it myself" or "I hurt there, can you give me a
rub" Particularly this technique has worked with my children. When I kept it to myself they couldn't understand why Mum was in a shitty mood or crying her eyes
out so much of the time. They have learned to accept that pain is a part of me and they have to live with it as I do. Not that it's all plain sailing. While I have accepted
that I have chronic pain I still get irrational hopes that one day I'll wake up and find it has gone and I can reclaim my life.
Where in UK are you? If you are close to one of the larger towns you may find there is a support group you can attend. Look up www.hmsa.freeserve.co.uk. I think
there is a list of links. If not they could probably put you in touch with a local group. Best wishes. Gwen

By Rich on Saturday, June 03, 2000 - 03:38 am:

My God!!!! I have never in my life heard such sadness coming from so many people at one time. This is terrible. I have a bit of advice for you all. DON'T LEARN
TO LIEV WITH IT. GET RID OF IT!!!! There is a cause for all of your problems. I do not know exactly what that is, everyone's a unique case. However, there is a
lot you can do right now to alleviate your pain. Here are the superstars:

1) Go get a diagnosis from a prolotherapist. Most joint pain is due to a laxity of the ligaments supporting the joints. In HMS, the ligaments are not supporting the
joints anymore which is why you hear popping, snapping, clicking and feel pain all the time. Ligament injuries cause the most pain because of all the local nerves in
the area. Prolotherapy has the ability to cure your condition if you fit the bill. Look up prolotherapy.com. You can even get a doctor referal list by calling
1-800-RX-PROLO.
2) Start taking nutritional supplements. Glucosamine, Chondroitin, Arthred Hydrolyzed collagen protein, MSM, Sea cucumber, Boswellia, Devil's Claw, Yucca
root, feverfew, A high-quality multivitamin,.....these have the power to start rebuilding your joints and connective tissues.
3) Here's an almost immediate relief in pain,....Go on a 7 day juice fast drinking nothing but fresh apple, carrot juice. Look up this site for more help. 7dmc.com.
After 7 days, you will feel amzaing. Also, your body would have eliminated all of that toxic waste and bad emotions you have all been suffering with. Then, it's time
for a change in diet. Start eating whole, live, un-processed foods like nuts, seeds, grains, fruits, vegetables, legumes, soy and pure water. Your body needs these raw
materials to help you beat your conditions. There are no magic pills. You need a WHOLE BODY approach to cure your problems and THEY CAN BE CURED. I
know, because I have eliminated 70% of my pain so far. For me, that's not enough. I need 100%. But can you imagine how you would feel if you felt 70% better or
more. It can happen. To summarize, look into the following:

1) 7 day cleanse
2) Change of diet
3) start nutritional supplements (Go to a biological doctor for more specific course of action)
4) See a prolotherapist
5) Start a modest exercise program.

This last sugesston is for the poor girl suffering from crohn's disease. Try this product. It has helped a 19 year old boy eliminate Crohn's disease, arthritis, irriatble
bowel, parasites, gastrointestinal upset, muscle wasting, weight loss, and a host of other problems. The product is called PRIMAL DEFENSE. This stuff is
powerful. You can order an information packet which comes with info on the product and pictures (with the story) of the young man suffering with your problem
plus a host of others. Order it from Alternative Awareness, 6725 W. Indiantown Road #40, Jupiter, Fl 33458 (561)748-9790
Come on people. You have 2 choices. You can try and COPE with your problems or you can work at eliminating them. I have not heard one problem from you that
can't be completely cured (in my opinion). Get out there and start getting better!!!!

Rich

By Odds on Saturday, June 03, 2000 - 03:38 am:

Hey Rich,

Don't allways start immidiatly with the direct approach...
You're mainly right but hey...
People do have emotions and that's a fact !
Besides that not everyone's case is the same !!!
Some peoples lives are rougher then others.
Why critize someone who feels lonely and bad !
Prolotherapy might be available in the US, but not in the main part of Europe...
Even 70% cured doesn't mean you lack the pain !!!
Emotional downness can make the pain severe ! Agree?
So why isn't someone allowed to shout that out once in a while on this forum?
Makes you stronger to coop with it and fight back afterwards !!!You do need the downs to crawl back up !!! You're a musician aren't you ? Isn't the great base for
creative people to climb up mountain high and fall down the deepest valley etc.?!That's the big drive to become more and more creative !!!
I do agree with you on lots of points, but please try to be a little less "male" on the theme of emotions !Here people want to share emotions besides finding a cure !
What's emotionally good for you doesn't have to be the same as for anybody else...
At least that's my opinion, without condemning yours !!!

By Rich on Saturday, June 03, 2000 - 03:39 am:

I was really upset when I read your post. I replied to it and it is posted but I asked the webmaster to remove it because it was harsh. I was only trying to help you. I
am "gung-ho" because the methods I use seem to work on a wide-variety of conditions. You act like you've "been there, done that". You say you have tried "various
things". Well, did you ever consider the posibility that you didn't do all that was needed or didn't do it correctly. There is a lot of info floating around out there and it
is difficult to sort through it. However, the techniques I use are all scientifically-proven to work and that is why I am so excited. I wouldn't offer them if I dodn't use
them myself. You mentioned the fact that my HM problem is degenerative. You're not being negative. Your also not telling me anything I don't already know. Just
understand this, Prolotherapy STOPS the degeneration because it strengthens the ligaments responsible for stablizing the joints. The lack of support from your
ligaments is
what makes you hypermobile. That is a scientific fact. If you strengthen the ligaments, the HM goes away. It's that simple. You mentioned genetics as a causative
factor. You are correct. However, you are not correct to say it is incurable. You take away all hope when you say that and that is not fair nor is it true. Prolotherapy
can strengthen ligaments even in genetcially damaged tissues. Maintainence treatments might be necessary to maintain your results but you won't be in pain anymore
and the root of the problem would have been adressed. I am giving you the latest up-to-date info here and you are treating me like I am yesterday's news. I'm sorry
that you think I am talking to you like a doctor. I really am. Many people have benefited from the info that I have and I have always prided myself by the fact that it
has proven to be so useful. I appologize for coming off like a guy who just got a brand new infomercial but I didn't deserve to be completely blown-off the way you
and Odds did.
I know a lot about this subject because I consider myself to be CURED. Just a few "loose ends" to tie up. No Pun intended). The only reason I am here is to share
that info with others and I don't appreciate being discreditied becuase I am not looking for a shoulder to cry on. I offer real solutions, nothing more. I am truely
sorry that this info doesn't impress you. Good luck with your fight against pain. Once again, I am sorry that I don't fit into your emotional endevors but I only
wanted to help. You can blame me? I have exiting info here. The very least you can do is look it up http://www.prolotherapy.com. Maybe I have forgotten what it is
like to have really painful days. Maybe I just can't relate anymore. I am sorry for that. But, one thing is for sure, none of your cases is incurable. If you not believe,
you have lost


Rich

By Odds on Saturday, June 03, 2000 - 03:40 am:

Hey Rich, I definetely don't have the feeling I responsed inappropiate, maybe you should read my reaction again.
I told you I do respect your opinion and I agree with a lot of it. But, this was not what Hilary asked for at that time. She was in search of a shoulder to cry on ( that
feeling !)
I also told you that Prolotherapy can be a miracle-cure like you say, BUT in Europe there is no prolotherapy!
Maybe you should read my reaction again, 'cause there might be a little chance you 'll read it differently then you did the first time.
I'm not a kind of person to judge about anyone's opinion and I thought I had made that very clear in my first writing.
I do however hope that other people stay open minded for my opinions as well.
Read it again and...hey if you wanna react...you're welcome !

By L Rodriguez on Friday, June 16, 2000 - 07:30 am:

Hi Rich:

I just wanted to mention that everyone is different. I appreciate your "positive" approach, but, even though I've tried many things you've listed - they don't work for me! A seven day "cleanse" diet is weakening. Moderate exercise can help if your not in too much pain to do it (and pain killers make it hard to coordinate!) Nutritional Supplements made no difference at all, and my rheumatologist told me that while prolotherapy may alleviate some of the symptoms temporarily, it certainly won't deal with the cause, which is a genetic collagen deficiency (I have Ehlers-Danlos Type 3). It seems to me that you may not have this particular problem.

Pain is a part of life for someone like me. And while I do my best to keep a positive attitude it is a very heavy burdon and one can't help but be "human". To know that for the rest of ones life, one will live with pain, have trouble bearing children, and not get better is no small sentence, I am sure you understand. I guess my point here is that we have to be careful about our attitudes, because while we share some things in common, we don't all have the same thing here. All the best to you - Lucy

By L Rodriguez on Friday, June 16, 2000 - 07:37 am:

Rich:

One other thing you should know - Prolotheraphy is Not scientifically proven to work, nor does it strengthen ligaments - it is designed to reduce imflammation! Nothing can replace the collagen (which is missing) which causes the tendons (and any other fibrous tissue) to be weak. Trust me on this point. I have been diagnosed and have discussed this issue with leading specialists both in the US and the UK. Please be careful about the accuracy of your statements. Again, all the best to you and I hope you're still doing well - Lucy

By jackandeve on Thursday, August 03, 2000 - 02:06 pm:

Hey Rich,
As the spouse of a beautiful woman who happens to suffer from EDSIII I think you should at least read a Merk manual before spouting off and clearly showing your lack of knowledge. EDS is a genetic disorder so unless you know of someone performing illegal human gene resequencing there is no cure!!!!! Now for the rest who are actually suffering from EDS, one thing that sometimes gives my loved one temporary lessening of pain is her inverssion table however I recomend getting clearance from a doctor who honestly knows what EDS is before hanging from your ankels.
G-D bless and may your suffering be tolerable.

By Elène on Friday, August 04, 2000 - 01:10 am:

Hi Rich - we don't hear you anymore...? You're OK after all these people falling over you? Hope you realize there is at least something true in what they've said. Hope you wondered where this anger came from and especially hope you found an answer - a real answer and not a planing New Age answer.
Beside HMS I have the rare uncurable lifethreatening disease aplastic anemia(AA).
One thing I missed in the reactions to your Positivism - and that is that there are many people out there telling me all these marvellous miracly things, like I should really see this iriscopist/healing person/medicine man/winti witch/urinewatcher/shaman/thai doctor (the newest) or any other miracle maker. I know this advice comes from a goodwilling heart. But the advice is REALLY bad, and I cannot tell everybody enough that nobody should ever consider to follow such advice without telling the "real" doctors!!!
And then, the worse of them all, are those who, like you, practically BLAME me for being ill. It is my own fault because I have the wrong attitude. As if I'm thinking myself ill, as if I choose to be in pain and danger, as if I could cure myself by simply WANTING to be cured. Now COME ON! Get real, man. Stop playing guru. These are dangerous thoughts and do not in the least help people, ON THE CONTRARY, you make it even harder. AND it is insulting. It is a good thing to try and stay optimistic - but in the same time, we really need to stay realistic too.
I really needed to get this off my chest.

By Gwen on Friday, August 04, 2000 - 10:08 pm:

Well said Elene. There are enough doctors telling us that our symptoms are all in our heads and all we need to do is snap out of it. I agree that a positive attitude is healthier than a negative one but at the same time I think there comes a stage where we have to accept that we have a condition that isn't likely to miraculously disappear and that there will be limitations on what we can do. I would recommend anyone with a chronic illness to read "On Death and Dying" by Elisabeth Kubler Ross which deals with learning to accept loss, whether it be of a loved one or of health. I think we need to accept that out lives are restricted and learn to find other things to do within those restrictions instead of yearning for what was or what might have been.
This is where the positivity comes in, not by running futily after every new therapy expecting it to be THE CURE but by accepting our limitations and getting a life despite them

By Sabine on Friday, February 16, 2001 - 01:15 am:

Is there a link between EDS and depression? I am still quite young but has suffered from depression for several of years now, I have newly been diagnosed with EDS and I just wondered if there could be a connection...

By Vicky in England on Sunday, February 18, 2001 - 08:52 am:

Yes Sabine there is.
I don't know whether it is scientificallly linked but I do know that over the last few years I have felt varing levels of depression. Sometimes it's because I am in pain period. Sometimes it's because I am trying to write an essay for university and I just can't concentrate. Sometimes I think my boyfriend will stop wanting to be around because I am such a pain, always so sickly. Then I start to think who the hell would go out with me; the ultimate high maintenence girl friend! or someties for no apparent reason I just want to cry. So I came up with a few coping mechanisms. Number 1 St Johns Wort. It's no Prozac; but it takes the edge off and you can pretend it's a vitamin! Number 2 Shopping. Even if you haven't got the energy to trail the shops, you can get on the internet and order something pretty for your home! Number 3 cry. A lot. But to soppy/sad movies that it is acceptable to cry to. The Green Mile is good, and Always with Richard Dreyfuss. Then you can tell whoever you live with that you are just caught up in the film, unless they are really understanding and then you tell them the truth but make them watch the film to, so that eventually you both cry but about the film not the HMS/EDS, you'll feel loads better. Number 4 get voice type, and then swear at it and see what it trys to write. It never stops being funny! Number 5 milk your good days for all they are worth.
Hope this helps.
Big gentle hugs to all

By Gwen on Sunday, February 18, 2001 - 11:46 am:

If you think about it, it's really amazing that we aren't more depressed. We all have a chronic disorder that causes pain, disturbs our sleep pattern, in many cases is linked with irritable bowel syndrome (so no comfort eating!) and the great majority of doctors we see either don't know what the hell we are complaining about or want to fill us full of anti-depressants or anti-inflammatories.
Any chronic disorder takes its toll of energy. Arthritis, diabetes, asthma all debilitate and drain people. So it is with HMS/EDS, fibromyalgia and similar conditions. Just because there isn't a clear set of symptoms or a definitive form of treatment doesn't mean that we don't have a condition that drains our energy and affects our moods. Being told it's all psychological or simply isn't happening only exacerbates any depression we have.
I accept that there isn't any real cure for my joint pains and all the accompanying nasties but I don't want to be told they don't exist. I know what I feel and I know also that it isn't what other people experience. I may not understand why I get joint pains but then neither does the medical profession. Not knowing the answer is no reason to say that the question is invalid.
I suspect one of the reasons for depression is that, rather than giving in to the pain and accepting that we need to moderate our lives to accomodate it, we are still trying to live up to other people's expectations of us and do as much if not more just to prove that we aren't trying to get out of things. We overdo it and then exhaust ourselves or feel guilty because we haven't coped rather than saying to ourselves that we have physical (and emotional) limitations and have to be guided by what our body is telling us. I have certainly felt better since I started saying, "No" and modifying what I did, especially in my standards of housekeeping and taking on extra jobs of a voluntary nature. Eventually people stopped asking me when they realised I was serious. Maybe they don't believe that I have a physical problem but at least I no longer have to apologise for not meeting their expectations!

By Jane on Sunday, February 18, 2001 - 06:34 pm:

AAA! You are so right! It's always so wonderful to hear the truth just outright like this. I ALWAYS do too much, push myself to spend that extra hour bent over the drawing board, or go dancing when my feet are killing me just because I want to dance so bad that I want to pretend it won't do me any harm. The hardest thing for me is moderation - I seem to fluctuate between taking incredible care and limiting everything to throwing caution to the wind and acting like there's nothing wrong. Neither way is good for me. But it's getting easier, and this site is definitely helping. Thank you so much for sharing, it helps us all.

By heather j on Sunday, February 25, 2001 - 02:50 pm:

lucy-just wondering you have eds3 so do i and you say you're likely to have problems having kids-i have-i lost 2 baby boys due to prem labour and it was a nightmare getting my daughter home alive and well.but when i saw the dr she said eds 3 had nothing to do with prem babies-this is conflicting advice ive had from different drs. i wondered what you'd been told.
heather j

By heather j on Sunday, February 25, 2001 - 02:51 pm:

p.s-i'm also going through a bad patch with feeling down at present. maybe summer will help
heather j

By Lucy on Monday, February 26, 2001 - 11:25 am:

Hi Heather,

They originally told me that losing the pregnancy had nothing to do with EDS (that was 5 years ago). Now they realize that there is a connection because of the lack of stability of the ligaments. My mother had terrible problems giving birth to my baby brother and we nearly lost them both - thankfully they are still here but my brother has EDS3 too.

Summer will help and we are all here too understanding and living it.

By heather j on Monday, February 26, 2001 - 02:09 pm:

lucy- do you think that your eds caused the problems? i think my eds caused my babies to die no matter what anyonne says. its just hard to think that my daughter might have to go through it too if we dont get some answers before shes older. at least we have a while to wait-shes only 2 and 1/2 but i want her to have the proper info from the beginning-she also has eds3.my aunt also lost babies, 6 of them and she about to go to get the biopsy i think so it may have affected her too.
anyway i'm going for some hydrotherapy( a bath) to try annd straighten out my neck and back.
thanks for replying
heather j

By Lucy on Tuesday, February 27, 2001 - 09:37 am:

Heather - my nephew has EDS3 too. Since I was the first in the family to be diagnosed, it has enabled everyone else to learn and be prepared. If we had all known that I had it when I was a child then I wouldn't have done ballet, gymnastics etc. (all the things that we can do easily but shouldn't). My nephew is a great swimmer, which is just about the best excercise he could do, and my sister had made sure to keep him out of activities that would cause him to stress his joints. With your daughter, I think you should look into excercises that can strenghten her muscles without stresses her joints, so that as she grows, she will be strong and stable. I do physio with a Swiss ball and it has made all the difference. Right now I am on a program to strengthen myself so that I can try and have children again. As far as we are concerned, this is the thing to do. A body that is not prepared for pregnancy cannot deal with the stress and weight of a baby. EDS3 is not a fatal disorder. In fact it is the most benign of all the Ehlers-Danlos types, since it is restricted to connective tissue. That doesn't mean that it's not hell to live with, but there are measures we can take. I hope this is helpful. Take care - Lucy

By heather j on Wednesday, February 28, 2001 - 07:37 am:

lucy-i think it's true what you say. when i was pregnant the obstrition said that bacause i had weak collagen the weight of the babies caused by cervix to dialate early. i had a cervical stitch to get me to term with my daughter but had to have 6 months bedrest too and this has caused problems with my eds recently-no exercise for 6 months and then a new baby to look after!shes now two and i'm only just getting better again- at least as better as i'll get i suppose.
my daughter has physio and has theraputic shoes with in steps in them to help strengthen her muscles. she has also just had to get some knee pads to wear because when she's tired she walks on her knees and they are bruising badly. she thinks they're great-just like mummys.
what is a swiss ball?
hope to hear from you soon
heather j

By michaela on Monday, March 19, 2001 - 11:50 pm:

Been a while since I was here.. I always am very suspicious of any clensing diet, because it is essentially advocating starving.. which if you get me on that topic will lead me to berating the fashion system and the hugely negative impact on women. In that instance though we really can blame ourselves to some degree because it *is* possible to not buy a magazine or new wardrobe every season... unless of course it has developed into a full blown addiction..

Anyway, been really suffering from irritabl bowel syndrome.. find I am actually getting allergic to wheat (not just intolerant.. I get a rash now.. sigh) so am on a new agey type diet.. rice cakes, starchy veges to replace bread.
I do find that porridge is a help, apparently the silica in it helps break down scar tissue, which we all have got thanks to HMS and the injuries.

I am happy to say I've been relatively pain free for the last year, which is a huge blessing, as I seem to have got a good balance between strength and stretch. But...
This is not a cure, I have to keep this up for the rest of my life, nor is it the answer for everyone. Some of you out there are in way too much pain to do what I do (walk for 1 1/2 hours everyday, some light weight training and aerobics) acting.. singing etc....
I have no cure for you, bt to keep looking for answers. Do not put all your trust in one doctor. I have been misdiagnosed several times, had people tell me results were fine when they weren't (ANA levels elevated, no iron storage). I also had a nurse ring up after I had my cholesterol levels checked (I am 25):
"Your levels are too high 5.4, you should cut back on red meat"
"But I'm a vegetarian"
"So you eat dairy?"
"Yes, maybe yogurt on my muslie, or a little milk or a little cheese"
"Then you should cut them out."
Umm.. like duh.. she did not tell me it was the 'good' stuff that was high.. as in it was being produced by my body, not ingested.. the other stuff was well below the recommended level.
I have low BP: 96/65 -100/70 and don't smoke etc etc.
I was wondering if maybe all this is connected.. for the day I actually got the HDL/LDL thing cleared up, I was told I had wax build up in my ears.. there was a heck of a lot in there sad to say... again, the body produces it.. I have very young skin, and all the women in my family (maternal side) look a good decade younger because of this.
HM? Dunno, like to find out.. also this tendancy to catch colds etc very easily... but apparently that is tied into allergies...

Sorry, major waffle at the end there.. just had a lot to say having been away for months:)
I did backpack across Europe for a week in January too:)

By iggie on Thursday, April 19, 2001 - 10:24 am:

hello, just wanted to vent. having hard time at the moment with pain and health worse. not really able to concentrate well, and that's getting me down as I have just started a new job as a trainee, and feel really stupid and useless. fed up with this illness, would like a new body. sorry to be so negative, it's just how i feel.

By iggie on Thursday, April 19, 2001 - 10:27 am:

hello, just wanted to vent. having hard time at the moment with pain and health worse. not really able to concentrate well, and that's getting me down as I have just started a new job as a trainee, and feel really stupid and useless. fed up with this illness, would like a new body. sorry to be so negative, it's just how i feel.

By Johanna on Thursday, April 19, 2001 - 12:48 pm:

So much fed up with your body lately? I'd swap with you, but I don't think mine is much better... Hang in there Iggie :)

By Johanna on Thursday, April 19, 2001 - 12:55 pm:

So much fed up with your body lately? I'd swap with you, but I don't think mine is much better... Hang in there Iggie :)

By Vicky in England on Saturday, April 21, 2001 - 05:34 am:

Hi Iggie and Johanna
I know what you mean; the running jokebetween me and my boyfriend is - can I get you anything sweetheart- yes dear, a new skeletal system. I was out shopping with friends the other day and after trying on trousers a friend said God I wish I had your body. As my elbow had just subluxed round my handbag, the resulting tirade get a few strange looks!
Hang on in there

By Joseph Renken on Saturday, June 16, 2001 - 04:45 pm:

I concur with all of the comments here. I am a 27 year old married man with 2 beautiful girls from my first marriage and a step-son and girl from my second. It hurts deep down to be out of work because of this condition and living in the area that I do...west central Illinois...it is hard to see if I could find someone around here to help me. I was diagnosed on 2-21-01 with this disorder and have had problems eversince with my employer who feels that I am paying off doctors to dream up this condition. Please email me with any info on doctors in the St. Louis area; Columbia, MO; Springfield, Il; and I would even go to Kansas City, MO. dhenderson_74@yahoo.com

By silvia on Wednesday, June 20, 2001 - 08:55 am:

Hi Joseph,

I have also been diagnosed recently with HMS and have been in pain since around Nov of last year. And I understand how you feel because I've also had to stop working due to this condition. Check out the link below, it talk about this condition and there's a link to doctor referrals in the bottom.

http://www.prolonews.com/bch.htm

I hope you find one close to you. I recently started this treatment and saw some improvement after my first one. Feel free to e-mail me if you have any questions.

By Paul Wright on Friday, January 25, 2002 - 01:39 pm:

Wow, I am feeling thrilled to have found other people who feel like I do and a little bit sad to read how bad it has got for some people (and by extension might get for me).
I have always been active and prided myself on being toned and fit -i suspect i place a little TOO much value in these things since i am feeling pretty low due to having put on weight in the six weeks I have been unable to mountainbike due to my first dislocation in my 'healthy' shoulder. Prior to that I have torn ligaments in both ankles many times but not for about 10 years now (though i still stumble around twisting my ankles when trying to negotiate shopping isles like i have had one drink too many!). I used to race mountain bikes semi professionally but my frequent dislocations in my other shoulder made it impossible to keep up the level of fitness i needed to turn pro. And of course I realise now that doing a sport like that at such a high level may have really caused problems for my later life.
Lately my problems have all been in my back. My spine is too flexable and so the lower/middle back ache I get is a result of my muscles working overtime to steady it. I am managing to keep on top of the situation by following the exercise regime my chiropractor gave me to build up my back muscles.
There isnt a day goes by though when I am not in pain from my joints an I was really interested to hear other people to talk of feeling like they had flu most days- exactly how I feel. Also, lacking the ability to concentrate is me to a tee! It has got to the point where I am really struggling to work ( i am a graphic designer) due to the general level of pain I can't seem to get 'on top of'.
Anyway, sorry to dump on you guys/gals- I DO feel better as I type this and am going to try to have a good Saturday and Sunday and forget about next week until it comes...

all the best everyone, Paul.

By Jessica on Monday, January 28, 2002 - 08:24 am:

Dear Paul - glad you found this board - I think its a real help too. Normally I just read it, but today i had a rant under dealing with doctors! Currently I am feeling very stupid as I had a complete downer on Saturday claiming that no one really understood this illness - the next thing I know is that several friends were calling round to cook me supper and check I was ok! Sometimes this thing makes you ignore the reality that friends can't know how it feels, but they certainly can try to cheer you up. Sadly I still feel really low - but at least I know I am not on my own. Not sure this makes sense - but I think I just wanted to respond so you don't feel like you are talking to air! Best wishes - J

By Maxine on Friday, February 01, 2002 - 02:32 am:

Having been depressed and in pain for years I finally got a diagnosis for HMS about three years ago no arthritis or rhuematism. Lately I have been getting cramps in my legs and shoulder muscles everytime I stretch, went to the doctor he said that the cramps in my legs could be caused by lack of oxygen in the blood if I'm anaemic which I am but the cramps in my shoulder were being caused by a frozen shoulder.
He took loads of blood and gave me a steroid injection in the joint this has actually loosened my shoulder back to how it was but the pain is unbeleivable. Blood tests came back really anaemic (blood loss from heavy periods)and inflamation levels which should be about 10 for a frozen shoulder mine are 75 this has led to more blood being taken results due next week. Needless to say even more depressed now.

By Silvia on Friday, February 01, 2002 - 06:25 am:

Maxine,

I'm sorry to hear that you're depressed. So many of us who are in pain feel this way too. For me living with pain has been a very difficult experience. I also have HMS and prior to the pain symptoms I was a very active person. I loved exercising-running, bike riding, aerobics, etc. Now I can no longer do these. And I have also been suffering from a neurologic condition known as myoclonus for about 7 months now. I believe I have this due to some strong pain killers I was taking. I have now stopped taking these and hope this condition will disappear.

Anyhow, even though I get depressed and am in pain, I also try to do whatever I can to make things better for myself. I've started reading a lot of self help books, and also meditating. This has really helped me deal with the depression . I also find a lot of comfort in prayer and in reading the Bible. I get daily devotionals from a website dedicated to those living with chronic pain or illness. It's
http://www.restministries.org

These devotionals are written by others who live with pain or illness. This site has a lot to offer to those who suffer like we do. They even have chats available for different groups of people. For example, they have chats for people who are young (younger than 40) and in pain. And they have chat rooms for everybody else as well.

Anyhow, I hope this helps and I'll keep you in my prayers.

Silvia

By Lou on Wednesday, February 13, 2002 - 08:12 am:

I feel so much better knowing that there are people out there who understand how I am feeling. It's like HMS has two sides. The pain side which is just horrendous some days, and then there's the psychological side which can be almost as crippling. I have only recently been diagnosed with HMS and am still learning exactly what it is but I've had depression for over two years and I'm really angry that my GP never connected the two problems. I know that he is not God and he doesn't know everything but if there are so many people out there all saying the same thing why aren't doctors taking any notice?HMS stops me from enjoying time with my two year old son. Some days I can barely put my arms around him and that is so hard. I cry alot but notin front of him if I can help it. Life with mummy in bed all the time is tough enough on him, I can't put him through any more. My partner is fantastic, very supportive and loving. If it wasn't for him and my little boy, I couldn't cope with the pain. Some days it feel like it will never end and the prospect of being free of this "thing" is so remote that I'm losing sight of it all together. My friend says that I should accept what I have, change my life style in every way to make it easier on myself and stop looking for miracle cures. I can't give up hoping for a pain free day, a day when I don't have to "prepare" myself for getting out of bed and facing it all over again. There has to be something because I am so down right now, I really don't like myself much anymore.

By Lou on Wednesday, February 13, 2002 - 08:12 am:

I feel so much better knowing that there are people out there who understand how I am feeling. It's like HMS has two sides. The pain side which is just horrendous some days, and then there's the psychological side which can be almost as crippling. I have only recently been diagnosed with HMS and am still learning exactly what it is but I've had depression for over two years and I'm really angry that my GP never connected the two problems. I know that he is not God and he doesn't know everything but if there are so many people out there all saying the same thing why aren't doctors taking any notice?HMS stops me from enjoying time with my two year old son. Some days I can barely put my arms around him and that is so hard. I cry alot but notin front of him if I can help it. Life with mummy in bed all the time is tough enough on him, I can't put him through any more. My partner is fantastic, very supportive and loving. If it wasn't for him and my little boy, I couldn't cope with the pain. Some days it feel like it will never end and the prospect of being free of this "thing" is so remote that I'm losing sight of it all together. My friend says that I should accept what I have, change my life style in every way to make it easier on myself and stop looking for miracle cures. I can't give up hoping for a pain free day, a day when I don't have to "prepare" myself for getting out of bed and facing it all over again. There has to be something because I am so down right now, I really don't like myself much anymore.

By Dawn S. on Wednesday, February 13, 2002 - 09:09 am:

Lou, I know how you feel. I've been there for years myself...I have a very active 4 year old and sometimes a full time job and a 4 yr old is more than I can handle... I am taking anti-depressants that have helped the depression. Once you can lift the depression, the pain is eased some and it's easier to deal with. I don't know why you spend time in bed, but you should seriously consider prolotherapy to get you some stability and less pain in critical areas like lower back (sijd) and hips if that is a problem for you. I had 6 Prolotherapy sessions done last year (3 on my one bad hip and 3 on my lower back), spaced a month apart and I feel like a new woman. I wish you the best. If you would like to chat, I'm at {kdmigloo@aol.com}. Dawn

By Sheena on Wednesday, February 13, 2002 - 12:57 pm:

Lou, I remember how tired I felt when my children were young. I did not know I had HMS then. I got less tired as the children needed less looking after, but then I had 2 years with back pains which eventually led to my diagnosis with HMS. For a time I was very frustrated and could not see how things would change for the better. All I have to say is, by taking small steps and making small changes I am now in less pain and feeling much more optimistic. The biggest change was changing my job to one which suited me better physically.

HMS is a long-term problem, and your friend is right, there is no miracle cure. Depression is quite logical in our situation! Try to believe that you have good times to look forward to. Find out as much as you can about other peoples' experiences, and if you think some of their ideas would work for you, try them out. I found this board very helpful a few months ago, but I need it less now.

Take care!