By Silvia on Tuesday, June 19, 2001 - 05:40 pm:

Hi,

I'm new to this message board, I was diagnosed with HMS recently and have been sad and worried. Currently I'm in pain in my whole back, shoulders, neck, right knee/foot. I had to stop working a couple of months ago because of this and am staying home daily because of the pain. I usually spend the day laying down watching tv/reading because sitting is painful as well. I only get up for basic necessities.

Is this common for people with HMS, to be in so much pain that you really can't do much? Please respond with your experiences, and also, any tips on coping would be appreciated since I'm new to this and have been feeling depressed and afraid.

Thanks
Silvia

By Gwen on Wednesday, June 20, 2001 - 03:22 am:

It is common Silvia but it will ease up on
occasions. The other thing you will notice is
that HMS makes you feel so very tired some days
that you just don't have the energy to do things.
This is OK. Don't try to battle but take the
time out to rest up until your pain goes away or
your energy returns. I worked myself into a full
blown depression that lasted five years before I
realised that I wasn't Supermum and that I had to
pick what things were priorities to me. If you
have a husband and family start educating them
that there will be days when you can't do things
and they'll have to either help you or learn to
fend for themselves. Also warn them that there
will be occasions when you will burst into tears
for no apparent reason (although we all know the
pain is only too real) or be short tempered. I
make a point of telling my nearest and dearest
that I am having a bad day and not to make any
demands. After a few repetitions it worked and
now I can slope off to bed without being disturbed
and they are no longer anxious if I'm walking
around the house with tears pouring down my
cheeks, but you do have to verbalise that you are
in pain/exhausted because there is no visible sign
of the pain you feel.

By Silvia on Tuesday, July 10, 2001 - 04:09 pm:

Hi Gwen,

Thanks for responding to my post. I appreciate the advice and I apologize for not posting this sooner. I know what you mean about just bursting into tears, it's happened to me many times before. This condition can be very exhausting and right now it's difficult for me. I think part of me is in denial and I'm just having a hard time accepting this or even believing that such a condition exists. Before I developed these symptoms I had never even heard of HMS/EDS3.

By Jay on Saturday, November 10, 2001 - 05:45 pm:

Hiya - god this board is so helpful sometimes. It is the 4th time this week that I have been exhausted, but unable to sleep and up until 2 in th emorning. I am not depressed, but my fingers are killing me and I feel kind of sad. I have tried hot chocolate, baths, music and meditation, but have not yet tried new age tapes of waterfalls! That sounds like a great idea and I plan to head out tomorrow and find one - thanks for the notion!

I am reading this board alot at the moment and sort of feel a bit pathetic for needing to do so. I was brought up in a very typically stiff upper lip english family and so feel guilty for occasionally admitting defeat to this thing!

My main method of dealing seems to be ignoring it and trying to go on - being mega busy and not admitting to it. I am heeding the warning of other people that that can lead to a downward cycle - I really need to go back to another doctor to talk about how its not getting better (when diagnosing me, my rheumatiologist said it would probably just go away!) but I feel scared that they will tell me to get on with things again, and I am trying, but I need some more support.

I would be greatful for a proverbial kick up the backside! from anyone who has an idea about how to cope with fear of rejection from doctors! I know it sounds silly - but help!

By Gwen Nelson on Sunday, November 11, 2001 - 06:52 pm:

Jay, I haven't been to this site for a while so may have missed someone else telling you this. If so, sorry for duplication. I assume you are living in UK from the 'stiff upper lip'. Have you been in contact with Professor Grahame? He seems to be the #1 when it comes to hypermobility. Also try looking up the HMSA website which is a British support group and seems very active.

Like you I had years of not being believed and trying to put up with pain. I think, No I know, I overcompensated and tried to be a first rate mother, housewife and worker until finally I went into a depression that lasted nearly five years. Not a good experience. It was only then that I made some drastic lifestyle changes.

Now my attitude is that health and happiness come first, bugger housework and if I don't feel up to it I won't push myself to go to work. I also, more recently, have started taking painkillers on a regular basis along with a sedative to ensure I at least get a decent sleep.

I also made a decision to tell my children,"Mummy is having a bad joint day" and that I needed to go to bed and not be disturbed or that I couldn't give them cuddles sometimes because I hurt too much. Much to my surprise they accepted this and are both very supportive, as is my husband and my Mum.

Mum is also hypermobile and my two children are showing signs. Twelve year old son is hyperflexible without the pain and 20 year old daughter is starting to get the pains without being hyperflexible although reasonably supple.

I think one of the very important things is that both my kids are aware of my condition and that it may be inherited. I have had two rheumatologists confirm that I have HMS (BJHS or whatever) although orthopaedic surgeons don't think I am but they only seem to know the classical EDS symptoms, Rubber Man. Having a positive diagnosis myself, I hope will make it that much easier for them if they strike problems with ignorant doctors.

It is so important to accept that you have an exhausting, debilitating condition and go with the flow. Accept the bad days and don't push yourself. There will be days when you are full of energy and can catch up. If you don't- so what. Life still goes on. My very best wishes.

By Jay on Wednesday, November 14, 2001 - 08:05 am:

Thanks Gwen, yes I am now hearing the warning loud and clear - I agree I must be a bit more lenient on myself! The crunch came on Monday when I found myself suffering amazing dizziness and pain together! - often the effects of overdoing things.

Thankfully, someone else pointed out the HMSA website to me and I have changed GPs to someone who knows about HMS. I shall certainly try a referral to Professor Graheme though - thanks for that.

I am trying to start to say no to people now and making sure that I leave myself space to chill out in the day!

I am also booking a holiday!

Thanks for your support - it definately cheered me up and its great to feel you are not being a big softee for admitting defeat every so often!

I hope your children are spared this thing, but if not, I think if you have to have it, at least they will be in an understanding environment, which is no small thing.

Best wishes and thanks

Jay

By jennifer jessome on Sunday, June 06, 2004 - 09:40 pm:

Where do I get diagnosed? My heart tests were normal, but I have all the other symptoms, right down to the crackling knees and flexible fingers-most of all FATIQUE!!!!!!!!!!!!!!!! I want to cry sometimes I need my bed so badly, and I think of what I have to do to get there. I have a great husband, but he is clearly frustrated. I am a horrible mother to 2 children and a horrible wife-who am I to bring this into their lives. Guilt..........., it never ends. I think I could sleep forever. I was diag. with Fibromyalgia, but have always had all of these strange little things wrong with me that no one doc could pin down, now that I look at the list of symptoms it's all about me-for as long as I can remember I would have one good day to every 5 lousy days. School was Hell, it was an accomplishment to go 5 days a week-but I HAD to be perfect and get great marks. Emotional situations suck the life out of me, the flu is not the flu, I feel like I am on my deathbed, everything just feels worse. I call myself the asterix in the textbook. The medical book will have an entire chapter explaining one of the things I have, but at the bottom will be an asterix leading me to the bottom of the page stating that in only 1% of situations does this occur-I am always the 1%! I am so sick of being told it's in my head, I need to learn to let go and relax, it's all a load of garbage until you live inside my body. If I could get a doc. to say I have it once and for all it would really help. Knowing what I am up against would be very empowering. My cardiologist is just that-the heart, who actually diagnoses Marfan's? One doc said I couldn't have it because my fingers were not long enough but as you know that's only part of it! Someone, please send me in the right direction. Thank you!

By michelle on Tuesday, June 08, 2004 - 12:46 am:

Jenniffer,
The National Marfan Foundation's website says that the medical geneticist most commonly coordinates the diagnosis, using information gathered by the orthopedist, ophthalmologist and cardiologist. Their site also has the current diagnostic criteria for Marfans. If you think you have the Marfan syndrome, consider taking the diagnostic criteria in with you to your next doctor's appointment. The website is http://www.marfan.org

If you think you may have Ehlers-Danlos, visit the Ehlers-Danlos National Foundation website for info on the different types and diagnosis. If you think you have the hypermobility type of EDS, orthopeadists and rheumatologists often diagnose the condition. The EDNF website is http://www.ednf.org

Michelle