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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.

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!

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!)

CURRENTLY:

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?

Hi doublelife...no 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.......

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.

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?

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.

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

tranquilitygardens Wed 14-Sep-11 17:27:18

I have had that maily as a child, and my youngst is struggling so badly with the chest pain right now. I always had v low bp as well except in pregnancy when it went high, and slow pulse!

You must have a big heart then smile

Costochondritis is the most likely thing to be affecting your dc, if they have not got other issues. I am sorry to hear they are suffering.

Hi

Waves at sparkle .I have eds dx by professor pope dc have it to . nowadays my main problems is my shoulder which is a pita as I transfer with them

Waves to THC....has that become aggravated by the wheel chair? Are you getting any strength building phsyio support for it?

Does anyone else have carpal tunnel as a result of EDS? Had mine for 3 years non stop now, they want to operate but I keep putting them off because of the dc. Haven't got muscle wastage yet, but the strength in my hands has alwayus been rubbish and is probably worse now.

Yes it's all the transferring am getting some but not a lot they can do other than cut how much transferring I do in a day .but let's say next year I can wear vest summer tops without any worries

Losing the bat wings is little consolation in my opinion, but get your silver lining where you can grin

Have you got the powered wheel chair plan sorted

How is everyone doing? I am trying not to get frustrated by local hospital appointments department who booked me in to have CT scan and ECG at the same time, on different campuses, and then told me, well if you cancel it you will have to go to the end of the queue!!!!!!! Felt like saying "what do you suggest then teleportation!" but life was too short grin

tranquilitygardens Wed 28-Sep-11 15:10:02

What has happened in the end then with the appointments Sparkle?

I have to go and get a MRI, I was crying at GP surgery, as I didnt' want to face the physical problem I was having and knew an xray would not show up the problem, and would have to have another MRI.

This condition is a pita!

I feel pretty useless at the moment and have a lot of external pressures on me, which I can't discuss on line, that are emotional and physical, where the pressure privided has no empathy and telling them what is going on with my health will not make a blind bit of difference.

Oh tranquility I am so sorry, it so hard sometimes, and eds/hypermobility is not best known by the medical profession, never mind the rest of the population. Funny how many people are quick to judge, and slow to help. An MRI is the way to go, look at it this way, at least you will have 30 mins of being forced to lie down, be still and not move, silver lining in everything.

I had to cancel the CT scan, and will have to wait for them to put me at the bottom of the list and wait for it to come round again.....shouldn't be that long, and had no other choice. But I had the echo yesterday at least.

tranquilitygardens Thu 29-Sep-11 17:01:59

When do you get the results of the echo Sprakle? sorry you have to go to the end of the que sad

I went to the dentist today, I brought along the EDS diagnosis letter, told him the last time that I had the issues with anesthetics at dentist before and for him to read up about it before, he read the diagnosis letter with comments about dentist in there.

1 injection, bang nerve pain when drilling out old filling.

2 injection, bang neve pain again, ignored, could feel every cut, clamp, stinging of something before the glue for the white filling in my tooth, was told I was anxious and told to imagine being on a dessert island etc, was trapped with the two of them in my mouth, not able to talk with stuff in my mouth, I was crying from when adhesive light being on to the end, I have never felt so trapped and put down in my life. I was so upset, I was crying my eyes out all I wanted to do was pay and leave.

I can't do this sort of thing, you give them all the info they ignore it and tell you, you are nuts, after years of that crap, no matter what you do you always get treated like you are the problem and the condition is ignored, I really am so upset.

I am so angry, that is terrible. Is there a method of reporting a dentist for that behaviour? You must not go back there if you can find an alternative dentist. I am so sorry, this was the last thing you needed.

tranquilitygardens Thu 29-Sep-11 18:23:23

I don't know if there is a way to report the dentist, feel a bit better now, felt dreadfull before. I have to go somwhere as the filling needs filing down, silver lining is slows down eating as can't chew due to teeth not meeting!

mycarscallednev Fri 30-Sep-11 07:36:36

Ditto the Dental thing - I had root canal work done, and boy did I feel it - although the dentist kept telling me I couldn't possibly. In fact she said 'if you don't keep still this drill could slice through your cheek' - lovely. She had to fill the tooth with pain killer, but I have a huge fear now of the dentsit, and fillings/work of any sort. What worries me most though is my son has EDS to a huge degree, far worse than I do, and I dread him having any work done in the future. When we go for check ups he rolls up his sleeve to show his elbow - he thinks that all clinic rooms contain someone who 'wants to see how bendy I am'!!

tranquilitygardens Fri 30-Sep-11 08:51:45

What hope do we have with professionals if you give them a letter telling them this sort of thing will happen for them then to still discount your pain and sensation and put you down and treat you like you are over anxious and making it up! I am still upset today, and my tounge is ripped to ribbons with a razor sharp bit of filling! I wonder if I can report this?

tranquilitygardens Fri 30-Sep-11 17:37:36

Hello again,

Just an update, I went to see the physio I am seeing for my knee's etc, and he looked at me regarding the back, when he was looking behind me when I was sat down, and came around to chat to me, I could see from his face, and what he said he was concerned, he said the pain relief was not enough and to see GP again on Monday, as my mobility is really bad in my upper back due to what is wrong (I suspect slipped disc).

I want to put my head back in the sand about this situation now, arrrgggghhh!

Oh tranquility...i am so sorry.

I have been thinking about your dental problem, and I have a strategy for you. Ring up NHS direct, they are there to help you find dental surgeons as well... tell them what has happened, what is happening with your tongue and filling needing filling, and ask them for help, including hjow you can make a formal complaint against the dentist who did this to you....ignoring your medical condition. I am sure they will help.

tranquilitygardens Mon 03-Oct-11 10:50:32

Thanks Sparkle, I am kind of trying to let the dental thing go, and move on and find someone else, I want to speak to my Dr about it at some point though.

I am waiting for the mri at some point to come through.

Feeling quite good mentally today as physically I was ok until about half an hour ago, I managed to get two loads of washing on, fold up dry washing, unloaded and reloaded the dishwasher, watered some plants, and then picked up some dirty washing to take into the kitchen and the back pain came back with avengence, so resting to see if it will ease up a little now!

How are things going with you?

Have you put a hot water bottle on your back....just to ease those spasming muscles?

I am ok, bit of chest pain today, and the usual aches and pains. I have just had a row with Enterprise road crew digging up road for Severn Trent and new water main, as they completely blocked us in, which they have promised they will not do, so can get to ds in an emeregency, so have had to have a cuppa to calm myself down! grin

tranquilitygardens Mon 03-Oct-11 11:11:55

Sparkle, the physio recomended that, he said try ice and heat and see which works, ice is not helping, and it has been so hot the last few days the last thing I wanted was to boil even more with a hot water bottle, will wait a few days until we get back to normal October weather and try that, I can't take any more heat right now.

Not good, it is worse when you make a point with people and they still do things like you describe, bit like me and the dentist really, not surprised you got upset. Hope you are enjoying your cuppa, and your chest pains, calm down a little at least x

Chest pains are lower then usual,at the bottom of my ribs, so think it is just imflamation between the ribs, in the cartiledge....not too bad, and not affecting my heart of lungs, so very manageable.

I know it is so warm at the moment, if you could even just stand 5 mins of heat it might help! Hope you have got your feet up!

tranquilitygardens Mon 03-Oct-11 11:34:02

Going to do a few things, then have a shower, as I have a meeting in a little while.

Take care of yourself x

Hope it goes well, am taking ds to the hospital later.....

Catch up with you later.
x

tranquilitygardens Tue 04-Oct-11 22:48:28

Sparkle how did you get on with your ds at hospital?

I got the MRI date through, I am in shock that the NHS is now doing weekends?

Not long to go, just over a week.

I got a trolly double tray, thing through the post today, the kids made me laugh when they had a try of it, I said you just want to pretend you are a waitress or something don't you, and they both said sod it yes, they are a bit old for that now, and it was sweet to see them messing around pretending like that for a bit. I even got a cup of tea and a slice of bread brought to me on the trolley as part of their drama thing!

It is going to be so helpfull, bringing random plates and mugs in and out, save my hands and fingers from injury/strain and my legs from extra walks. I really am looking forward to putting washing from machine onto it and wheeling it to the air, and then using it to transfer the dry washing to the bottom of the stairs, it will save my back so much pain and strain!

I feel like a right old lady with it though, what I thought to myself is sod it if anyone judges me, laughs at me, pities me for having it at my age, it is something that will make my life easier and that is all that matters right now to me, and I find it as helpfull as a washing machine.

What a fab idea, that is going to be so helpful

Ds hospital appt was a joke, we got there 10 mins early, even after we had had to wait for 20 mins for a dsiabled parking space (I knew that would happen), the board said 90 minutes wait, after we had been there 40 mins, the nurse tiold me it would be another two hours before we would be seen, which meant 6.40pm....ridiculous. I told them very politely there was no way I could keep ds (8) dd1 (6) and dd2 (2) happy there for another two hours, cafe was closed so no dinner, and half hour drive home after the appt, which I would expect to take at least 20 mins, plus xrays etc. I told them to send me another appt for him, and left!!!

tranquilitygardens Wed 05-Oct-11 13:54:17

oh no Sparkle, that is dreadfull.

I am having a bit of a parenting crisis at the moment, you know a pmt moment when you have loads and loads of extra problems than is the normal on top of all of life's general stress and having a disability and being a single parent to two kids with disability and emotional issues, and can't take any more, that is me today.

Big hugs and a brew

I have felt like that many times over the past couple of years, so I completely know how you feel and I am not a single parent. My dh does have depression, and works long hours 70 miles away, so it is down to me to keep on top of all the medical bits, school bits, and general children bits, as well as running the house and trying to keep the smallholding ticking over. None of which I managed today, as I felt under the weather, and so have spent the entire day just pottering around and playing with dd2 and the kittens. blush

tranquilitygardens Thu 06-Oct-11 14:23:23

Jes, as soon as I finished posting yesterday there was a knock on the door and loads of drama, I feel pretty low today due to the way I was treated yesterday. Hopefully I will feel better tomorrow.

I am worried to ask what happened, so I will settle for asking if you are all right? I do hope today was a better day. I will give you a smile thanks and a brew in case it helps.

tranquilitygardens Fri 07-Oct-11 18:37:25

ah bless you, I am gradually feeling better about things, will pm you x

tranquilitygardens Fri 07-Oct-11 19:30:44

I am sorry I just deleted it all.

I am here if you want to talk.... hope today is a better day for you. smile

tranquilitygardens Mon 10-Oct-11 14:19:02

Today is going ok, dreadfull back spasims, otherwise ok!

How are you today?

I got a blue badge at last, and I am so pleased, it makes a big difference, even the thought of going out now as I know I will be able to park easily and have a short walk.

My ds's blue badge has made such a difference, I am so glad you have got it. I am ok today, just a bit niggly, but feeling really down in myself. I have got my rebooked ct scan for tomorrow, so hope that will throw up more answers than questions, weirdly the bottom 3 or 4 ribs are so painful to touch, and hurt if I lie on my front or side in the night...chostochrondritis maybe (? sp?)

tranquilitygardens Mon 10-Oct-11 14:34:44

Sorry you are feeling down in yourself x

Maybe, my ribs are sore too, due to the back spasims on the left hand side so can sympathise there!

Need to go back to the gp and get better combo of meds tomorrow!

I was feeling a bit peeved at that consultant I saw for the children last week, I felt positive there, and now I am feeling like he was using very well thought out language that was basically blaming me and the children for not working double as hard as everyone else exercise wise, for the same results a "normal" person has if they do nothing at all.

I feel I have a bitter taste in my mouth in general from the medical profession in general at the moment.

You may be over thinking that, to be honest he probably didn't put that much thought into what he was saying in the first place angry If you think that with our joints, our muscles are already having to work much harder than a normal persons, just to keep everything in place....but the way he said it has left you feeling responsible for a medical physiological truth and that is not on, AT ALL! It is very hard, and reality dictates that it is not possible to do what the consulatnt was alluding to....that is what makes me so angry, they are so stupid sometimes.

Been knocked flat for past three days with monster migraine, still feel awful. I hate EDS! Hope you are Ok tranquility.

grumpykat Sat 19-Nov-11 13:24:32

<pokes head round the door>
Hello? I've just found you. EDS type 3 checking in to say hi. Fairly mild, subluxes and indiscriminate pains notwithstanding. Complicated at the moment witha recent diagnosis of kidney disease which no-one is prepared to say whether or not is EDS related. I'm sincerely hoping not, although it is a connective tissue issue (rhyme- ha!) as I'm having to take a high whack of steroids daily, which increases joint instability and bone degeneration, not what I need.
Who's here?

I'm here....sparkles waves to grumpykat

No wonder you are grumpy.... wink

I have to say the cynical side of me doesn't believe for a minute that your kidney disease is not related......sorry sad

I hope you are doing ok on the steroids, lesser of two evils I guess.

DoubleLifeIsALifeHalved Mon 05-Dec-11 11:52:46

Hello everybody, sorry I deluged posted then decided I'd killed thread & haven't been back since! Won't make that mistake again!

Has anyone actually managed to get their eds in a manageable state... I feel like my whole life is aimed at this, & wonder whether it's a myth?

I have been dealing with social services over the last few months, trying to get help so I can stabilise condition, vs flig my body to death. It's been pretty bloody awful though, how many hoops? Assessments, referrals, reassessments, incorrect notes, incorrect referrals etc...

Finally ss have said they'll try & provide some 'respite' by helping with my 20 mth ds... However they can only get the funding for this if I agree that he is in danger of being neglected!!! So if I dont get help & get iller then ds will be at risk... But I am feeling really upset & panicked about this... They are tryi g to play the system in my favour so I get help, but actually what they are doing is saying because I am disabled I am a bad parent, & calling into question my bond & suitability to be a parent... NOT a tradeoff I can make...

Has anyone else been put in this position? From the internet it seems a common issue for disabled parents, but I'd lke to know how to handle it? I need to first get my health under control & then I will fight this prejudice & awfulness to the highest level I need to, as it makes me so angry that disabled people have to go through this... However how can I get myself better enough to change things unless I access help? Oh it's all pretty awful.

Have ss visit tomorrow & will be rejecting their kind offer of labelling me a neglectful parent & plead with them to find another way, but these particular peoPle are the only ones trying to help so am scared I will alienate them & then where will I be?

Gosh I hope that your meeting with ss went ok. I have always avoided ss, out f my own paranoia I am sure.
I think you need to go back to the gp, and discuss options like physio, OT, different medical options too, and see if there is anything extra that can be offered for support. My eds definitely goes in cycles of how manageable it is. was much worse in my 20's than I was in my early 30's. Now in my late 30's (at least for a few more weeks) I have various issues, but as I am not working, just being a mum at home and carer for my ds, I find it easier to manage, and I am better at saying "I'm not doing that today as my pain is too much", and just leaving things, even if that means no bath for the dc, or a dirty house for a few days/weeks blush.

romina Fri 10-Feb-12 15:18:14

Hello,

I'm EDS III too. I go up and down a lot in terms of health. Compared to some I'm very lucky, I don't dislocate, but have chronic back, neck, shoulder and foot pain, plus odds and ends elsewhere. I was diagnosed about 12 years ago, so have been round the block a few times....
I dis a major graded exercise programme which did really help enormously. I now find that if I keep it up Im a lot better - but its very hard when it also hurts so much.
Hope you are all doing OK - awful situation re SS.
big hugs

DoubleLifeIsALifeHalved Wed 29-Feb-12 22:09:27

Hello just checking in, hope everyone is ok, it's hard to keep posting when life is so tough isn't it.

To update you, success from ss, after much sternness & legal speak they gave me a lot of hrs direct payments from adult ss & no child ss or risk of neglect concerns - thank goodness. Unfortuneately the effort needed to do this deteriorated my condition so much that for Jan & most of feb was completely bedbound. Trying to get back from that set back is going to be hard, but I have to somehow... If only to employee someone with the direct payments as been too ill to do it.

Anyway, thats me for now

BeachBlue Wed 07-Mar-12 21:45:58

Hi, this is my first ever post on mumsnet!! I have EDS and have spent 4 years agonizing over whether to have a baby (pass it on) or if I'll cope with pegnancy and childcare. Any advice? Think finally Decided to start tying next few months

Hi Beachblue - nice to meet you. I hope the fact that no-one replied to your first ever post on mumsnet has put you off.

What type of EDS do you have, if it is type 3 hypermobile type you are like me. I have three beautiful dc. One has inherited eds from me, that is my ds, but the other two, my dd's have not. Ds is quite affected, more than I was told he could be....but he is bright and wonderful and a big blessing in everyone's life. Good luck with trying for a baby.

Double good news about ss, not so good about leaving you bed bound. I do hope you are feeling better now.

BeachBlue Sun 08-Apr-12 23:53:49

Hi, yep I have type 3. Finally decided to try despite the inheritance etc. Any tips for surviving pregnancy, and actually being able to look after a baby? I use a wheelchair anywhere that isn't the house, and i really don't know how I'll lift a baby out of a cot.

Wishuponastar82 Mon 27-Aug-12 20:24:46

Hi everyone,

Think I'm in the right place to post,

My son was diagnosed with quite severe HMS at 2, he wasn't a bum shuffler but did commando crawl from 1, didn't sit up unaided till 18months and is now almost 2 1/2 and is no where near walking. He's a lovely boy and im swimming him twice a week if I can doing anything to get him to move in to water also has a scuttle bug and he's buzzing around on that. He's see's his paedatrician every few months and his Physio too but after reading all the posts, if we have more children are they likely going to have HMS too?? I'm sure you all know it's just really hard watching everyone else's children doing everything your so desperate for yours to do for you and especially themselves.

There isn't much support out there I guess unless you have a little one who has the condition you don't get it.

I'm scared he's going to go to school crawling!!!!!!

Monthlyfestivities Wed 28-Nov-12 21:42:52

wish try the HMSA charity boards. A lot more active.

So I have eds III, finally started ttc after debating it for years, figured if didn't do it now would never be able to do it. Terrified of how being pregnant will effect me, the not knowing about passing it on etc. That's me!

linzi381 Wed 27-Mar-13 12:38:57

Hi i also have eds would love to meet others for a coffee.

CouthySaysEatChoccyEggs Sat 30-Mar-13 10:59:23

I and 3/4 of my DC's have HMS. I have scraped together enough money to take my DS2 to see Prof G in May. It's taken me 3 years to save this up. I'm certain that we all have EDS, due to other issues we have.

We all have HMS. I have arthritis as a result of it. I'm going for Xray's next week, as the Doc thinks there are serious issues with the majority of my joints. I get through the day with painkillers.

I also have IBS. And epilepsy - but tbh I think it might be POTS, as my epilepsy dx is under query right now due to my atypical seizures. I have very low blood pressure too.

I also have a leaky heart valve.

I also have to have orthotic shoe inserts. My back and neck are basically crumbling, and my wrists sublux 15-30 times a day. Lately my left big toe has started to sublux daily, as has my elbows, knees and fingers. I was born with dislocated hips.

When they try to take blood from me, my veins constantly collapse, making it difficult.

I am resistant to local anaesthesia too.

I have cigarette paper scarring from my stretchmarks as they split to raw flesh and bled every time I was pregnant.

I score 8/9 on the Beighton scale.

My DS2 is the worst affected - he didn't walk till 3.7, talk till 3.6, he is now 9yo, and scores 9/9 on the Beighton scale. He's recently been dxd with kyphosis, and now needs orthotic inserts (again) for his posture. He's currently having hydrotherapy in a bid to keep him out of a wheelchair.

My DD and my DS3 are also affected, but not do badly (though bad enough). DD scored 6-7/9when she was younger, and now has frequent knee subluxes. She also has two leaky heart valves.

My mother and my Dbro also have HMS.

There are numerous things that point to EDS for ALL of us, but it is scraping together the money to see Prof G privately that's the issue - my PCT refuses to refer on or test for EDS "as it will not change our treatment plan from that of HMS".

Frustrating as due to being a lone parent with 4 DC's, I can't work, both due to my own disabilities and due to caring for them. All 3 of my DC's with HMS also have 'Autistic traits' (for the older two), and the youngest is being assessed for Autism in may. Plus they all have OTHER medical needs too!!

Trying my best to fit in 4 lots of Physio, 2 lots of Speech Therapy, 2 lots of play therapy, and med rounds PLUS keeping the house slightly liveable, plus all the admin that goes along with 3 DC's with disabilities.

My 4th DC (actually DS1 is the one i haven't spoken about) is just starting to be looked at for Aspergers too. And I believe that he is mildly hypermobile, but hasn't been dxd.

All good fun!

Fazerina Tue 23-Apr-13 09:20:46

Hello everyone! Not sure how often this thread gets read, but hopefully someone will be able to help.. I wassl diagnosed with HMS in January this year, but have now been told by a friend I probably have EDS instead. What's the difference?

My symptoms include: chronic joint pain, chronic lower back pain, stiffness all over my body in the morning and after having sat down for a while, flat feet and the associated pains in my feet, ankles and calves, one of my elbows is kind of stiff and painful and won't straighten properly, pains in my neck and fingers, migraines, fatigue and IBS. I also have very receded gums, re-occurring chronic uveitis in both eyes and when I was younger I had a heart murmur.

The rheumatoligist I saw was very (!!) Unhelpful and unfriendly. He told me I was just bendy and to get on with it basically. I am overweight, which obviously is a problem, but he made that into an opportunity to patronise me and make me feel uncomfortable. Anyway, I got a referral to a dietician for the weight issue and physio. I saw the dietician, was given some general guidance and then discharged. I have a lively 2-year-old, work from home as self-employed and no childcare, so have not been able to make an appointment to see the physio.

Anyway, what I wanted to know, is how can I get an appointment with this notorious Doctor Grahame I keep reading about here? We are planning for second pregnancy and this time I would like to avoid the problems I had last time with debilitating SPD and a horrible delivery so I would like to get a proper diagnosis on my condition. Do I have to see him privately, or can I ask the GP to refer me?

Fazerina Tue 23-Apr-13 09:50:26

Oh, and I forgot to ask, how exactly is EDS diagnosed? The rheumatologist had several blood tests done on me an an x-ray. Surely something would have shown up..?

Corrigan92 Tue 17-Sep-13 09:55:06

I have.!grin I have eds multi type with crossovers. with me the thing that got me diagnosed was my digestive system I have intestinal failure gastropareses , pseudo obstuction and ago IOC bladder along with lots of other bits like pots etc. my main prob was eating and was commonly told I had a eating disorderer they soon found out noting worked and so I was tube fed. I experienced this from 8 but didn't link everything to get her eds wise until I was 17 ( ow 20) I was also told I'd never have children. believe it or not.! BH how do you guys find parenting, I have a brilliant partner/carer who is amazing with his little girl and I don't know how is cope with out hi , so my hat goes off to any single mum edsers ! intact I have a page on Face book called eds awareness fundraising and hope xx

Corrigan92 Tue 17-Sep-13 11:25:18

fazerina there eds will not show in blood tests etc, its diagnosed by symptoms and some thing called the beighton scale, which is where they manipulate your joins to see how flexible they are and you get points for different ones and then depending on the points you can be diagnosed, its often diagnosed by geneticists who look at your family history etc as it is a genetic condition. once diagnosed they take 3 pieces of skin normally from your inner arm and send them to labs which can normally tell what type you are and rule out vascular if needed. hope I helped

jammypuddingmonkey Tue 22-Oct-13 14:40:16

My dh has HMS, he's not well enough to work at the minute due to it and I'm his carer.

Just wanted to ask, how long did other people's appointments with Dr Prof. Graham take to come through? As dh has been waiting two years now- and last April he was told he's still on the list- they said they might want to see our children (who are all bendy and a couple of them have pain from it) at the same time too. We can't afford to pay privately. He had autonomic testing this year, but he wasn't able to do the tests for POTS (too heavy for the tilt table! He's since lost 2 stone)- so apparently that means he doesn't have it- but they said they want to see him when he's a bit better and can do them hmm.

We're having fun at the minute trying to get our house adapted- we were moved into this property because it can be, but it's a fight. OT's have been hard work, to put it mildly. Most recent thing is that dh doesn't need to have the front door accessible when he's using his chair- which if I'm not in, he'd need, because he falls when he walks. Makes such a difference to him when he uses his chair (energy levels, pain etc)- but the house is impossible to get around as it is. So frustrating trying to get it sorted out.

Hello! I'm already on this board due to my PsA, but just had HMS confirmed too. Where do I go from here, rheum was quite dismissive and more concerned with my arthritis?

flow4 Fri 17-Jan-14 05:50:12

Hello. smile Just checking in... I got a diagnosis of HMS last August, after a couple of years of serious problems and a lifetime of bendiness. I also have arthritis in multiple joints - incl. certainly knees, hips, hands and jaw, and probably feet and shoulders too - and can't walk without pain ATM. I'm reeling with how fast my mobility and other abilities have been deteriorating, tbh: five years ago I was dancing salsa, climbing hills and playing 5-a-side football; 2 years ago I was still able to walk a mile or so without thinking; now I struggle to cross the landing to the loo. sad

I struggled to get a dx for a couple of years, with GPs telling me it was all depression or anxiety. When I finally got to see a rheumy, they diagnosed me at once, but because the severity of my arthritis wasn't picked up for a few months, I had physio which made me worse, and actually dislocated my kneecap. sad All medical attention so far has been on my joints - and indeed they are bad - but I have other problems including circulation issues, palpitations, occasional chest pain, and bladder and bowel 'irregularities' that I'd like advice on... I'm back to a (second) rheumy next week, and waiting for an apt with an orthopaedic surgeon...

Fun, isn't it? hmm

BeyondIsBloodOfTheDragon Tue 01-Apr-14 12:17:10

Hi again

Just want to let you all know, I'm finding a group called "hypermobility support group uk" to be very helpful on facebook, lots of parents with eds/hms on there smile

Flightless Wed 09-Apr-14 18:54:38

I have eds and dysautonomia and 1 baby of my own and 3 step children altho only my little one and stepson live with us full time ATM

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