By Gwen on Sunday, June 04, 2000 - 12:53 pm:

Recently I had to go for another battery of tests and was asked to estimate how much pain I thought I had on a 1-10 scale with 10 being "worst pain imaginable". I
rated myself with a baseline of 1.5-2.00, a peak of about 4.00 after activity and most severe as about 7.00. I was told that this wasn't considered particularly high.
I've been thinking this over for a while now and have come to the conclusion that when one has been in chronic pain, one actually becomed desensitised to it after a
while and ones baseline is probably what a normal person would rate as maybe 2.00+. I often find, when I am lying in bed trying to relax I am frequently surprised at
how much pain I had been coping with during the day. It's rather like the old adage about the man banging his head against the wall. It was so nice when he stopped!
What experiences have others had with pain evaluations?

By Asleigh on Sunday, June 04, 2000 - 12:54 pm:

I was admitted to the hospital for pain about a month ago (my mother posted about it) and afterward had to go to a physciatrist because they refused to accept my
hypermobility syndrome as a reason for the pain, and thought i was making it all up. the psyciatrist was loud and presumptuous, and though i know it wasnt
intentional, rude to me. she asked me if i could have three wishes, anything i wanted, what would it be? and i said, ten million dollars, a horse, and my dream house,
normal wishes for a 16 year old, which i am. at the end of the session she commented that i hadnt wished for my pain to go away. as she wouldnt listen to anything i
had to say, i didnt bother telling her that after a certain amount of time with pain, you tend to grow accustomed to it, and it just sits in the back of your mind as long
as its not out of the ordinary, so sometimes its truly not the first thing that pops into your head because you try to concentrate on happier matters. i honestly dont
think she would have understood. do any of you?

By Johanna on Sunday, June 04, 2000 - 12:54 pm:

Dear Ashleigh,

You know what the problem is with psychiatry? Everything you say can and will be used against you. If you would have asked for your pain to go away, or
complained about your physical problems in another way, the psychiatrist would have said you were obsessed with your physical condition (that's what happened to
me), now you didn't she says it's not a big deal to you. Forget the psychiatrist, the only thing most people on this list might ever need a shrink for is learning to cope
with ignorant physicians.
Don't be sad, hang in there and keep fighting.
love,
Johanna

By Andrea on Sunday, June 04, 2000 - 12:54 pm:

Dear everybody in pain

What exactly do these doctors think they are doing?! A pain scale?? We lot might as well use the Richter Scale (for earthquakes, but I trust everyone knows that),
that one is at least open at the top end!!

Oh, I am sorry! Now I am letting off steam on the Board as well... My pain threshold is nowadays so low that I started crying the other day because I accidantally
bumped my head on the wall at the other end of the swimming pool. So yes, I think it takes very little to push us lot over the edge. But I have certainly learned
something here: I will be ready for that stupid question should any doctor of mine ever ask me about pain scales...

Regards - Andrea

By Jonathan B on Sunday, June 04, 2000 - 12:55 pm:

thats all you can't measure it surely
is anyone an empath

By Gyll on Sunday, June 04, 2000 - 12:55 pm:

I have found this board really useful. It has been so good to hear from other people. I am going to see a Rheumatologist consultant next month and although I have
always been aware
that the time for a diagnosis has to be faced I am still unconvinced that a hospital bloke will recognise that this is a REAL CONDITION and that the pain I
experience, which has never really been helped by prescription drugs, hurts me. I can "do" all those double jointed things. I look spookily like all those examples,
and I wish I didn't. My skin is very fragile,just look at me and I bruise, and I have a history of dislocations. My knees and thumbs and neck are sore most of the time
and then I get the real pain (which is much like toothache) and then it hurts.

Gosh I am sad.
sorry
gyll

By Ann on Sunday, June 04, 2000 - 12:56 pm:

It seems that people who are chronically plagued by pain have no reference on a scale of 1-10, since we are used to dealing with a myriad of aches and pains on a
daily basis. It has also been proven that a womans' tolerance to pain is approximately 9 times higher than a mans, although most medical professionals are loathe to
admit this. After many years, I have found that I have accepted the "normal" or chronic pain I experience and have learned to live with it. It is often the addition of
something more, (although what might be considered inconsequential to a "normal, healthy person") such as an additional headache, toothache or earache that can
often send me over the edge. As for pain scales and rating them, I have found that most medical professionals ask these questions for a reference, discounting the
fact that you have probably been living with this pain for a long time, often years, and your mind as well as body seems to diminish the level as being tolerable,
because you know no other way. From personal experience, I have found that I am completely unable to tell someone how much something hurts, in reference to the
norm, because I no longer remember what it is like to be "pain free", unless of course I 've been shot up with demerol and don't know my own name!
Take care:)

By jude on Tuesday, June 06, 2000 - 05:22 am:

Maybe we should get together and write a booklet on all the different types of pain we experience. It could be a universal assessment tool for all HC profs to use when assessing our condition. if we all had a copy they couldn't ignore us... could they? We were always told that pain is what the patient says it is, but in reality that is very often ignored. I too have never had a pain free day for as long as I can remember now - although I did have 3 pain free hours following reflexology not too long ago.

By Jennifer T-S on Wednesday, June 07, 2000 - 10:11 am:

Boy am I glad I found this site!! I am 35 years old and was diagnosed with HMS last fall. It took 3 doctors and 2 years to finally be told why I am having so much pain. Prior to that time I did not have symptoms, which my doctor says is due to the fact that I was (keyword "was") very physically fit. Up to the age of 30 I worked out 6 days a week. Why did I stop? A new job that had me working long hours, and traveling an insane amount left no time for workouts. Anyway, my big question to everyone is: Does anyone find that weather conditions affect the level of pain? You know, like when the pressure is low due to a storm. I had a horrible day yesterday following a pretty good one. The only difference was the weather. As for rating ones pain, I agree that it is hard to determine, especially when one lives with pain everyday. Last week my doctor asked me what I do on the bad days, and I said "I just grin and bear it!" Which he found some humor in.

Another question is: My husband and I are planning for a child. Because of this I have stopped taking the prescribed meds (Ultram & Vioxx). Can anyone share their pregnancy experience, i.e. was it painful etc.?

By Lucy on Wednesday, June 28, 2000 - 08:19 am:

Hi Jennifer:

I find that weather definitely makes a difference. I'm based in Boston, US where the summers are horribly humid and I, consequently, become more of a blob of pain! Storm pressure, rain, anything really other than a perfectly clear sunny day, make things difficult.

As far as child-bearing. I don't want to be negative, but do want to share my experience. I too am taking Vioxx, as well as Quinine and have recently been "upgraded" from Ultram to something called Vicoprofen. Whenever I think I can give myself a med break (I hate taking all these pills), after about 3 days without I end up in hell! So please be careful with that.

I don't know where you're hypermobility "hits" you most, but my husband and I did try for a child about 4 years ago. Less than 6 weeks into the pregnancy I couldn't even walk. I was sadly unable to see the pregnancy through. Since then, I have had horrible problems with my SI joint and muscle spasms. I have EDS type III and it has manifested itself in some way in both my younger brother and older sister. However, my sister (who does not have it too badly) has two beautiful boys and while she did complain of some hip pain during pregnancy and does have some lower back pain now - she's absolutely fine!

What I'm trying to say is that everyone is different. Some women find that pregnancy actually helps them and some, like me, find that it just makes things worse. Another thing to consider is not just the pregnancy but also making sure you have help with small children - all that lifting can be a big strain.

Good luck - Lucy

By Iggie on Thursday, August 17, 2000 - 02:37 pm:

I live in the U.K. and am finding it hard to locate a physio. who understands how significant an issue HMS can be. Many joints are affected and I am currently going to physio. for back, hand and knees. My physio. compared my pain and stiffness to hers after working in the garden and didn't seem to understand I feel like this all the time; sometimes it is much worse; I don't need a diagnosis of a form of arthritis to explain how bad I feel; and it is therefore not psychological!! Sorry, this wasn't meant to be a rant, but I am so tired having to try to justify that I can feel this bad with ONLY HMS!

By Sheena on Friday, August 18, 2000 - 12:42 am:

Hi Iggie, Have you found the UK self-help organisation for HMS?
www.hypermobility.org/
If you join you might be able to get local information about specialists. I am now going privately to a physio in London who has HMS herself and is a member.
Best of luck
Sheena

By Mitch on Monday, February 26, 2001 - 02:58 am:

Hi everyone!
I have just arrived here having been diagnosed with HMS by my latest (sound familiar?) physio.
For the last four years I have had chronic pain in my left hip, which I can only describe as similar to toothache, together with occasional stiffness in my lower back and radiating pain down my left leg. I can find three "pinprick" painful points in my hip and buttock which, when pressed, will make me hit the roof with pain!
I was initially diagnosed with sciatica (made sense at the time) then trochanteric bursitis (tennis elbow but in my hip) and I've had NSAIDs, cortisone injections into my hip, acupuncture, hypnotherapy, exercises, unltrasound and lastly (and the most unpleasant thing that's ever happened to me) an epidural steroid injection which has left me with the same pain as before and some..... Finally they did an ultrasound scan to see what's in there (unbelievable at this stage in the proceedings) and the guy cheerfully told me he could find "no evidence of trochanteric bursitis."
Well. I cried and ranted and felt soooooo angry that after all this time of hopes being raised and dashed (have I mentioned I'm also on anti-depressants?) jobs being lost and relationships ending, I don't have what they were treating me for.
Now I have another diagnosis to play with.
My last physio referred me to this one for acupuncture as he was at a loss, she hasn't done any yet as she has actually been LISTENING to me and I have high hopes of finally getting somewhere in her care.
I'm telling you all this (if you're still reading, sorry!) because nobody else seems to have mentioned trochanteric bursitis. I'm wondering if this rings any bells?
Please let me know, I'd be interested to hear from anyone.
Thanks for your time
Mitch

By Tyra on Monday, February 26, 2001 - 11:19 am:

I do have to agree that with those who say that people that live with constant pain have a higher painlevel. About five years ago I underwent a breast reduction operation and my doctor told me that if anything would go wrong I would feel it first, so there would be no problems. I went home and everything was just great, I felt no pain so I thought that there was nothing wrong. After about a week I woke up and found my bed completly covered in blood, later I found out that I had a hematoma in my breast but I had not felt a thing!
(something that the doctor thought was very strange)
I firmly believe that after living with daily pain I have raised my pain level to be over the normal.
I was also wondering if there are anyother persons with EDS, that reads this board, which has underwent an operation that has went wrong?

By Gail on Sunday, September 30, 2001 - 01:18 pm:

Hi there, I was wondering if anyone else feels like I do, I have hms and have been in constant pain for as long as I remember(Im 33), about 9 years ago I decided to get a tattoo, and I now have 6, becuase to me they are my way of having a pain that I can control and something nice at the end of it, although to me they are not really painful compared to my everyday pain. Just wondering if anyone else feels like this.

By Sheena on Tuesday, October 02, 2001 - 09:22 am:

To pick up Tyra's message, I had a hysterectomy about 10 years ago, and afterwards I did not seem to have any pain when sitting, standing or walking. The other ladies all had more pain than I did. I remember thinking that I couldn't feel anything in my abdomen, which was great, and I began to wonder if I would never feel any pain again! (Unfortunately that did not happen!)

By Lin on Wednesday, October 03, 2001 - 10:54 am:

I agree with everyone about not feeling pain as much, because of the daily pain, little things that happen to me dont hurt at all. like i smashed my elbow into my locker the other day and didnt feel a thing, i thought it was realy odd. Here is a question of mine, i found this strange... I have EDS III and HMS, and with the EDS i have lots and lots of bruises, nasty blue and dark looking ones, but they dont hurt at all. Anyone else have this? I dont even know where most of my bruises come from, and when i notice them they dont hurt, you know how usualy when you press down on a bruise its sore? Well i have these large blue and purple bruises that feel just fine.
Lin

By Dawn Schaller on Wednesday, January 30, 2002 - 08:48 am:

I saw a new ear/nose/throat doctor yesterday and explained I experienced much less pain than an average person would for the same problems. I also have less sensation of all kinds. I had an EMG or ENG (don't remember the name) on both legs and both hands and the doctor told me I had severe double carpal tunnel syndrome and pinched nerves in both legs. Except I don't have carpal tunnel syndrome and although I have had a pinched sciatic nerve in my back (and believe me, although you have chronic pain from that that for me was tolerable, when the nerve all of a sudden gets pinched, THAT REALLY HURTS!), I do not have pinched nerves now. Nothing was ever done with that info, but seeing the ENT doctor yesterday and explaining that, he said it sounded like peripheral neuropathy. I checked that out on the internet and it sounds plausible. Widespread peripheral neuropathy can be caused by many things, such as severe trauma or more commonly Diabetes, it also lists "collagen vascular diseases or disorders"...hmmm...There are three stages to it- The 1st being unnoticeable to the person and on nerve tests. The second being somewhat noticeable to the person and showing abnormal function on nerve tests-like the tests I had done that showed I had severe carpal tunnel syndrome and pinched nerves in my legs. The third shows marked nerve malfunction on tests, very noticeable to the person and frequently causing shooting pains, burning pains, etc., etc. I dislocated my shoulder in a fall and nine months later had it surgically repaired, but when I dislocated it, it did not hurt. It just became totally unstable and would not stay in any one proper position. My doctors couldn't believe that I had no pain from the dislocation and no residual pain from the stretched out ligaments. I had pain from my "Open Bankart" surgery for about 2-3 days following surgery, but it was not tremendous... I do not have any shooting pains, burning sensations, etc, and I hope I don't, but maybe others have the same problem. I wonder if anyone else has this problem or if any researchers have looked at this...