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any EDS or HMS parents out there?

(83 Posts)
tranquilgardens Sun 10-Jul-11 17:52:57

Wondering if anyone out there with similar issues, and wanted to chat?

tranquilitygardens Mon 11-Jul-11 14:24:19

Hi, someone hacked into my email account, so I had to reregister, as this name now.

SparkleRainbow Tue 12-Jul-11 11:27:35

I have found you! You see there is no escape wink.

I have EDS, orginally dx as BJHS then redx to EDS in about 1997, by Prof Grahame. I have predominantly major joint problems, ankles a little, elbows, knees, hips and spine ( I lost a disc when I was 25 ish, not as traumatic as it sounds, or could have been, it just disintegrated over night one night and I woke up about an inch shorter..very very weird), lower and cervical. I do get a lot of pain and swelling as well in my fingers and toes, but I find that so much easier to cope with for some reason. I also have asthma as a result of EDS and an anaphalatic response to NSAIDs when I was in my 20's. I have migraines attributed to EDS, terrible varicose veins, including varicose veins of the vulva (sorry tmi), I have carpel tunnel in severely in both hands/wrists (awaiting my dd2 being old enough to have the surgery), neurally mediated hypotension and I have recurrent inflamation around my heart, which causes terrible chest pain on breathing. So that is me.....I can take on painkillers or antinflamatory drugs apart from paracetamol and codiene. I have been down the physio route, and try to keep as active as I can, but most exercise routines are out of the question. I find using the wii balance board, and running a smallholding with three dc. one of whom is more profoundly affected by eds, is enough for my body....more than enough.

tranquilitygardens Tue 12-Jul-11 23:32:53

Hi Sparkle, well done you!

I and my children's issues can so relate to your descriptions.

I had wondered if the heart pains dd2 has were related to eds, how did they diagnose that with you?

I got diagnosed as having hms late 2006 by a rhumy, and eds by Prof G a week ago, gp had no idea what eds was, as they had never heard of it before.

What hope do people have really if GP's have no clue about these conditions to put the random symptoms together, instead of putting it down to everyday things and palming off, oh well!

I am tired right now, will come back again, was nice to hear your story.

I used to be able to do so much more than I can now, my energy is ebbing away.

catherinea1971 Wed 13-Jul-11 17:05:32

Hi I was diagnosed with hms a few years ago, was good to know that all the pains/problems with my joints for as long as I can remember were not in my head (as my mum was told by a certain well known childrens hospital). Will try and post more later ds1 going into meltdown....

tranquilitygardens Wed 13-Jul-11 17:55:50

hi to you too Catherinea, hope your ds ok!

catherinea1971 Thu 14-Jul-11 06:12:10

Hi Tranquillitygardens, ds is fine was just unhappy that he had the Wii controller wire removed from around his neck, he had ASD and had developed a liking for having something around his neck and pulling tight!!
I have 3 dc's, dd1 15, ds 4 and dd2 nearly 17 months. I believe they all have some degree of being 'bendy' but think that the younger 2 may start having problems as some of their joints seem very hypermobile and even loose iykwim!!!
Just wondering if anyone else feels significantly more tired with hms/eds, is it part of the condition? smile

tranquilitygardens Thu 14-Jul-11 10:09:08

I was told by Prof G, that it is a related to EDS, so I am not going to feel bad anymore about the tiredness, I used to fight it, and from now on I am going to give myself permission to have a rest. I have no idea how you are going to manage that with two little one's Catherinea.

catherinea1971 Thu 14-Jul-11 11:22:08

Thanks, I thought it may be related although getting rest in this house is nigh on impossible!!! I've heard about prof G, how did you manage to get an appointment, I was diagnosed by a rheumy, seen twice then discharged, I went to physio, they had never heard of HMS let alone how to treat it! So I pretty much survive on pain meds when the pain is bad although I try not to use them too much.

tranquilitygardens Thu 14-Jul-11 23:38:37

Oh your story sounds so familiar, I was the same.

I asked my gp to refer me, I asked them as there was a genetic test for EDS and HMS was likely to be EDS, could I get a referral, I was under the impression I would see a regular rhumy, and then a specialist if lucky, and my goodness, I could not believe my luck, within a few weeks, I had an appointment, and when I showed up, I had an hour with Prof G at my local hospital! I am convinced that it was due to having hms already and my gp putting the words EDS in the referral!

tranquilitygardens Thu 14-Jul-11 23:39:05

My GP had never heard of EDS by the way!

SparkleRainbow Mon 18-Jul-11 16:57:05

Sorry I have been offline for a few days. Hi Catherinea, nice to meet you. smile I too felt that the aches and pains were in my head, and at times I still get these weird feelings about it all. I was told by a rheumy after my initial dx that I had fibromyalgia, and not eds, then saw prof grahame, who said rubbish, went back to see that other rheumy, and he just shifted ikn his seat and said "thats whjat I said too" They make me scream they really do. I go twice a year to have a check up, blood tests and some xrays, but I just potter on mostly. My ds though has rheumatologists, orthopaedic surgeons, paediatricians, physiotherapist, clinical psychologist, orthotist, one to one support at school, PDSS outreach.....and me.

Exhaustion is a well recognised symptom. My ds suffers from it alot, I did when I was younger I am better in that respect now.....just knackered all the time anyway.

My heart stuff (technical eh) was dx after I was admitted to hospital with resting pulse of 120, bllod pressure of 100/50 and recurrent sharp stabbing chest pain and breathlessness. Eventually after barrage of tests they dx asthma as a result of allergic reaction to NSAIDs and EDS, combined with inflamation of the sac around the lungs, cartiledge between my ribs and sac around my heart. The pain is so extreme that breathing becomes difficult when I have a flare up.

DoubleLifeIsALifeHalved Tue 26-Jul-11 22:42:50

hi can i join you... diagnosed by dr kaz kaz (next office along from prof grahame), had genetic testing last week... body very screwed up and can't work out how to make it better, just gets worse and worse... (just posted a thread here & in gen health)...

DoubleLifeIsALifeHalved Fri 29-Jul-11 02:01:32

sorry this is going to be a long one... i am over excited by making contact with other ed sufferers and hoping you can advise...

QUESTION 1: can i ask does anyone have ongoing care from a consultant, or is it a diagnosis then discharge kind of thing?

it feels really wrong to be diagnosed with something this debilitating, and then followed up/ treated by people who don't understand it or give wrong advice...

i don't know all the symptoms and effects of eds, and am still trying to make sense of it all... (so migraines, are they eds? hows that? i have them, what does that mean? ripped muscles, how is that related?), and i've been told my body is in a degenerative spiral, and i need to try and get out of it as current prognosis is not good... but don't know HOW to...

i feel like i am picking up tiny tidbits from all over the place but don't know whats right or wrong, and lots is contradictory... its all a bit of a nightmare really, particularly as i have NO support and am still reeling from the horror of my poor darling sister

so any advice would be really welcomed.... about a comprehensive/ up to date definition and list of symptoms, and the best ways to manage/ treat it???

QUESTION 2: how do you deal with people not understanding it (hcp and general population)?

how do you tell people about it (work, but also friends) refuse to do harmful things with grace and firmness, i am really bad at it, although surrounded by some pretty poisonous people as well, which doesn't help...

how do you get good treatment and advice, if no one knows about it in the medical world? how can you inform them and engage them vs them telling you wrong stuff???

QUESTION 3: how do you manage the thing i find hardest?

pacing, not screwing up your body even more, and even building strength?

how can you pace when your body doesn't give any signal that you over stretching/ doing something wrong? i keep getting advice aimed at people who need to get doing more and get fitter to manage chronic pain, which isn;t me - eds means any attempt to get fit can screw it up more... arrgh!

DoubleLifeIsALifeHalved Fri 29-Jul-11 02:02:54

my history, in case that helps?!

is that my sister was horribly ill with a number of unrelated things and died 3 yrs ago, now it turns out she prob had eds, and i have it oo, but dont know what type.

ive always been hyper mobile, with dodgy ankles, dislocating toes & thumbs, and painful shoulders/ collarbones, and migraines, & general weakness, exhaustion and fragility... and feeling sick when standing up, and back pain, and slight scoliosis, but thought it was me being up myself and i should get over myself (well, told that too).

The weakness had been getting worse and sprains not healing etc, but it was felt i was making a fuss about nothing. Then got pregnant, developed spd at 20 weeks, on crutches and excruitating pain, c section (ds was huge, footling breech and back to back), left hospital barely able to walk on crutches, turns out my hip had subluxed as i was moved from bed to bed (i think, no formal diagnosis), body went into complete meltdown, spd got dramatically worse, knees, wrists, elbows, fingers, jaw, all started to 'let me down, and collapse underneath me', hips stopped moving, lower & upper back agony, collar bones subluxing hourly etc... finally got gp to refer to orthpaedics... who diagnosed unstable pubic bone, arthitis on pubic bone, v small hip ball & sockets, dehydrated discs, and suggested eds... referred me to a rheum, who said i wasnt even hyper mobile and it was just post pregnancy aches (!)... got myself referred to prof grahames clinic...

they confirmed eds, and also diagnosed hyper parathyroidism, which would be causing some of the bone and muscle pain, and stopping bone growth/ replacement.

so as of today:

i am being treated by...

Rheumatologist (hannah kaz kaz who saw me once, did bloods, echo etc, saw me again and made a whole host of referrals and recommendations then tried to discharge me, but kindly gave one more appointment for oct as i panicked and cried...)

Her direct referrals were: pain specialist, 'expert' physio, psychologist, geneticist

Her recommendations to gp were: podiatrist, blood test monitoring (for parathyroidism), and other stuff cant remember sorry! anyway, gp has been nice but doesnt know much about ed, and nothing about parathyroids, and is loathe to really do anything except prescribe anti depressants and physio (see below!)


Pain specialist (facet joint & sacroiliac injections, plus tramadol meds), good but not actually helping with the core issues of trying to build strength & stop injuring self

Physio (i pay for one as NHS one made me so much worse. was recently referred to a 'expert', except she also didn't seem to know much, told me to think past the pain, get moving more, do aikido and cycling... so i went away feeling confused and yet hopeful i could be more active... and promptly put myself back a hell of a lot by WALKING (let alone martial arts or biking!)

Geneticist (classifying which type i have, not helping me manage it/ treat it, suggested i need to have an echo every couple of yrs, but not who would do this or interpret it)

waiting for psychologist, podiatrist & a second 'expert' physio follow up, and wondering whether to try and get an earlier appointment for kaz kaz as gp doesn;t seem up on what bloods to do and how to interpret results...

meanwhile i am on anti depressants, tramadol, paracetamol, acupuncture & acupressure (me paying for),and also paying for the only thing i think really helps, private physio who keeps me soldiering on ... currently on crutches again as ripped my calf muscle pushing the buggy...

DoubleLifeIsALifeHalved Wed 10-Aug-11 23:07:01

Did I kill the thread? Sorry....

Half way through photo albums looking for photos of me My dear sister & my parents through our lives for the geneticists, not been a fun evening. Glad Ds just interrupted...

tranquilitygardens Thu 01-Sep-11 17:01:21

Hi, I am back, I am going through a difficult time right now, wondered if anyone else was around? I could do with some support.

DoubleLifeIsALifeHalved Fri 09-Sep-11 02:49:48

Hi am around had stopped checking but saw your post about pain on another thread & decided to have a last check.

Are you ok? You want to share a bit? What's up? Life is bloody hard innit, I am struggling with discrimination & non understanding from ex h & work, so very much relate to eds giving you a need to be supported...

tranquilitygardens Tue 13-Sep-11 21:42:40

Hi Doublelife!

Tell me a bit about the discrimination you are suffering from your exh and work hun!

I am feeling loads better now emotionally, thanks for finding this thread.

Physically i am in a right state, just came back from a and e with a cocktail of drugs, I am in severe agony with the pain.

What is going on with the rest of you all?

SparkleRainbow Wed 14-Sep-11 13:13:02

Hi fear you are not a thread killer.....but I forgot about the thread blush and stupid. I am going to read through your posts now.......

SparkleRainbow Wed 14-Sep-11 13:31:56

Just wrote a long post and mn ate it arghh.

First question doublelife. I have a rheumie who is lovely, who I see twice a year. She refers me for blood tests, cardiac scans, xrays etc. She was discussing a geneticist only yesterday, but no point for us I think as the dx is clear and accepted. Migraines are indeed a recognised symptoms as are things to do with digestive tracts etc. My NHS physio was equally crap, so I don't bother, but my ds has a super one.
second question. some people are great and some are rubbish, poisonous as you say. I keep it to myself most of the time, long decided if people ask how you are that they don't actually want to know, not that i ever whinged at people, but you know what I mean. I stick to forums like this now, where I can just say good day, bad day, and I know that they understand. Sometimes it is a bit lonely, sorry.

Third question, prof grahame said to me never to push through the pain, if something hurst stop, straight away. Easier said than done, if you suffer after the event. It is a learning curve. My sis can walk and build her strength up with exercise, neither ds or I can do this, we would be crippled. You are clearly in a bad place at the mo, so you need to be very gentle, rest your body, some gentle physio only, and when you have stablised look at gentle strength building.....well that is what I would do, I am not an expert but I have had this for nearly 40 years, and been dx for nearly 22...and had ups and downs in that time.

SparkleRainbow Wed 14-Sep-11 13:34:00

Tranquility, sorry I wasn't around when you needed support. How are you doing? I am ok, sagas with ds continue, and I am back to hospitak soon for more ecg and ct scan of heart. oing ok though really, loads of back pain, and knee pain that is the real difficulty, but feeling ok about myself, just focussing on ds....and other dc whats news grin

tranquilitygardens Wed 14-Sep-11 17:12:55

Sparkle have you got heart problems due to the EDS?

SparkleRainbow Wed 14-Sep-11 17:25:53

I have very low blood pressure and a very fast pulse rate, and I get excrutiating pain in my chest. I have had scans and xrays over the years, apparently I have "structural abnormalities" but I have also carried three dc full term, or as near as, so it can';t be that bad. I just want to get tio the bottom of the pain, because it is so debilitating, even if they can't do anything about it, I want to know what is causing it.

SparkleRainbow Wed 14-Sep-11 17:26:22

Yes they think it is EDS related, but talk about the blind leading the blind! hmm

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