To Hate Ehlers-Danlos Syndrome

[DoctorShoe]

My brother just relocated my shoulder.

I'm sick of this. I'm still in my twenties and I'm in desperate pain (not that being older would make it better).

My heart rate rises to roughly 150 on standing for long periods (up to 200 if I so much as go for a walk). This makes me feel desperately ill.

I have the appetite of a bird most days, and have lost over10kg in recent months.

My spine is the shape of a question mark and is getting bendier. I work 70 hours a week.

I'm covered in bruises due to the clumsiness that comes with it and the fact that I bruise like a peach.

I suffer from desperate depression on top of it.

DP and my GP are wonderful, but I just wish I could feel just a bit better.

Thanks for listening to my whinge. I'm just feeling a bit desperate right now.

[giraffesCantFlyWithReindeer]

sounds crap yanbu x

[musicalendorphins2]

My family was diagnosed by first a rheumatologist, who sent our dc(adult) to a geneticist, who wanted the rest of the immediate family to attend as a group. There we discovered both dc's (adults) have EDS, and got it probably from me, however dh also has HM bendy cousins, so a bit of a mystery unless we go and have biopsies. I am not HM, but a rheumatologist I went to afterwards thinks that I was when younger, but am stiffened by my widespread arthritis. I am unwell and in pain all the time. As are both dc, tbh, we all grew up this way and didn't really realize it was not normal, My skin is not like my DC, who have the very super soft EDS skin. Meanwhile, we all had blood work to see what type of EDS it is, as both dc are HM and stretchy. The blood tests, we were told beforehand, only show it 50% of the time, even if positive, something about the chromosome spiral or something science bla bla bla. So, both DS's went for skin biopsies, which do not have the 50% chance of a misdiagnosis, and both came back as having Classical EDS. Was not painful, as they freeze the area and the biopsy is small like a fingernail on a child.
In the middle of all the appointments and tests, I posted a few links on FB about EDS, as my family history is loaded with people who seem to fit the bill, and a cousin's dd saw it and realized this could be why her children and herself have so many issues. They went to the doctor and were diagnosed, the doctor apologized for not connecting the dots, but said she had learned about EDS in school, but had not heard of it since. They are still waiting for the "official" geneticist diagnosis. It takes a long time to get in to see a Geneticist in Canada.

[Balaboosta]

A phenomenal thread. Couldn't read and run without sending you all my best wishes and hope for improvement in the near future.

[DoctorShoe]

Thanks again everyone for such a wonderful thread.

Wishing you and your families a peaceful and painless Christmas, with a little bit of extra energy thrown in.

Much festive love. :)

[MoominKoalaAndMiniMoom]

YANBU. I feel the pain! 20 years old with a baby's skin and a pensioner's joints, terrible IBS, headaches and frequent subluxation. I hope my DD doesn't have it.

For years it was just written off as my party trick. You know it's not good when your physio knows you as 'the one with the knees'

Merry Christmas EDSers and HMSers alike!

[trashcanjunkie]

Wow great thread! I'm currently being looked at by the northern genetics people for either eds or some type of connective tissue issue. They are going to look at the dcs, one of whom has stretchy skin plus various other things and one who is hypermobile and has pain and various other things. I am currently recovering from surgery to shorten the ligament in my right foot. It's been in a non weight bearing cast for eight weeks and they took the cast of last week, and since then my foot has come up like a frigging pudding. My mil thinks it's not normal, does anyone have any advice about surgery recovery?

[Eeyore86]

I've taken longer to recover from surgery I've ever had then they initially thought it would. If you have further surgery it might be worth talking to them about alternative stitching options as normal sitches aren't great for eds skin.

Hope our feeling better soon though I'd probably rest as much as possible and get a gp appointment if the swelling continues if your not back at the hospital soon. Good luck with your investigations if it's anything to do with the Centre for Life in Newcastle your in good hands.

After a horrible night last night of not being able to walk even with full brace and crutches my knee seems to be behaving a tad today so Merry Christmas everyone!

[OodKingWenceslas]

Merry christmas all!

Yes re surgery & stitches. I've some interesting scarring from stitches and my skin isn't too bad.

[OodKingWenceslas]

Scabs and things take forever to heal too

[trashcanjunkie]

It is eeyore! That's great to know. They are putting us into a research project and going through our dna with a fine tooth comb

[HansieLove]

Becca, if you had one of those disabled tubs, that is elevated and has a door so one can step into it, could you use that? Is there a foundation that would provide that for you?

[ohlittlepea]

Things like this are so unfair. I'm really angry about your suffering and wish I could help. Yanbu at all. A friend suffers a condition which involves chronic pain, so I will share something that has helped her. She tried mindfulness. Sounds completely bonkers but really helped her. Is there any way you could have reduced hours at work? A job share or a move from hospitals to community based work? I'm sorry that you're suffering. I hope in time you find things that make life a little easier x

[musicalendorphins2]

ohlittlepea , mindfulness, isn't bonkers. Especially since EDS'ers quite often have anxiety and also depression. It may not help the pain, but can help someone deal with the pain, restrictions, frustration, and other pitfalls of life with chronic pain and illness and help prevent one from letting it get them down. stopbreathethink.org/

[ProbYou]

www.dailymail.co.uk/health/article-2887519/Mother-five-dislocated-bone-body-yawning-isn-t-safe-her.html

[Eeyore86]

Trashcan, I can't recommend the centre for life highly enough they were excellent with me and really made me feel confident with them after so many doctors/hospitals not really having a clue so good luck!

How are you feeling today? Hopefully it's settled down for you but If your local to Newcastle and your surgery was at RVI it might be worth going to the minor injuries department if it hasn't settled down and you can't get a gp appointment

[trashcanjunkie]

The swelling goes up and down depending on how much I'm standing on my feet. It's a pay off between letting the rest of me seize up! I will keep an eye on it for now... Personally I'm not terribly worried yet. I know I'm really prone to swelling so I think I'll give it a while longer. I had my surgery at the freeman hospital and I'm back there in January for another check up. It's been awful but so far worth it. The surgeon was able to dislocate my foot easily when he tested me under anaesthetic. Now it's solid as a rock! The bad/good news is the other foot will need doing....

[ohlittlepea]

Musicalendorphins2 sorry I didn't mean to sound disrespectful, I am a fan of mindfulness but am mindful of the fact that if someone is saying 'I am in pain' it doesn't always go down well to say 'learning how to think differently can help'... I will find a better way to phrase it in future. :) xx

[BeyondTheTreelights]

Marking my place, will come back to read asap. I'm another eds-er
and to you all

(Oh, and theres a long running 'spoonie' thread in disabled parents where you are all more than welcome :) )

[Becca19962014]

Beyond, just wanted to say hello and sorry you are someone else with this illness.

[musicalendorphins2]

ohlittlepea, no apology is necessary, you said it just fine. :) (but thank-you anyways). I didn't feel your post was disrespectful in any way. Any promotion of meditating/relaxation therapy is good as far as I am concerned.

[ChristmasJumperWearer]

Sending Bucketloads of sympathy all round...my family is blighted by hypermobile joints, but EDS is a whole different world of pain. I know how much hypermobility limits me and my family, I can't even imagine how much you all suffer.

[Becca19962014]

hansielove sorry I didn't reply to your post. I need a wet room due to losing consiousness that makes having a bath very dangerous and although funding is possible it is not possible more than once and as I will never own my own place or can even guarantee I'll have somewhere long term due to local housing Allowance being reduced all the time the application was rejected. I was told to get my own place(!) and reapply. I'm on council housing list but that's not a long term solution either.

[BeyondTheTreelights]

Hi again :)

Well, stories of how people were diagnosed...

As a toddler, i had an inguinal hernia, as did one of my sistrs

Me, well, i was a dancer (as were my two sisters) from the age of three til i quit at 16. Being hypermobile was normal and non-remarkable. My mum was hm too, but her mum was also a dancer, sister a gymnast, so she just viewed it as normal too. No 'weird' double jointedness, everything i could do i viewed as normal, and the people who couldnt were the weird ones. After all, i knew other dancers who were much bendier than me (i wonder now if they got any sort of eds issues in later life - i remember one girl had very stretchy skin. It was like mine, but i attributed mine to being 'overweight' (which i wasnt, i just wasnt the skinniest there) )

When i was in high school i started to get severe migraines and fainting. Though the two didnt happen together. My mum got migraines too, as did her sister. By now, their mum had died so couldnt quiz her about her health problems. Had a lot of investigation for the fainting and it was determined to be possible epilepsy. Gp at the time said my eeg looked like it, but in the absence of full fitting and to prevent stigma or having to take nasty meds, they were not happy to diagnose.

I had trouble with working in my early twenties. Depression that started in my teens hit big time, so while i toyed with seeing the gp about thinking i may have cfs, i eventually broke down with the depression and anxiety and got signed off for a while.

Skip forward to pregnancy with ds1. I fainted at the gps, hospitalised after they found sats of 84, but this time my fainting was attributed to anxiety and i was signed off for the rest of pregnancy.

Labour for ds1 started at 8.30am. Hospital at about 10.30, expecting to be sent home. Ds1 decides he is coming out in a corridor and midwife tells me "stop pushing, it is not time yet". I was not pushing, my body was, but i make a conscious effort to stop. 12ish, ds found to be in distress. Born by ventouse about 20 mins later.

(Just gonna post now so i dont lose this then will come back and keep going!)

[BeyondTheTreelights]

Labour from ds1 caused a rectocele, diagnosed by gp. Referral put off as by now i was pregnant with ds2

Pregnancy for ds1 had not been great, sick right the way through and trouble with sciatica and carpal tunnel, plus minor niggly spd pain, but just seen as "pregnancy issues" so no biggie. Ds2 was worse, major fatigue but written off as pregnant with toddler so again, nothing major seen. Spd much worse with ds2, but i was still walking. Again, diagnosed with depression during pregnancy, and this time a different gp put me on ads (first time i was told it wasnt allowed and was much less stubborn)

I was always viewed as a hypochondriac by family and the school as a child and a teen, so was determined that my pregnancy problems (along with the still quite frequent fainting) and the prolapse were normal , just unlucky.

Homebirth booked for ds2 due to fast labour. Had started under consulatant care due to the prolapse, but was told it would make no difference to my pregnancy so fine to transfer to mw led.

Ds2 was 16 days overdue and induced. 3 hour labour. Not much later my sister (the one who had the hernia too) had her first ds, another induced but three hour labour.

Ds2 was only a few months old when i started getting bad pain in my wrists. He was my tiny baby and i couldnt lift him with my hands. My fingers and toes started to swell and i had a big psoriasis flare (had psoriasis since a teen) and lost a lot of my hair as the p on my scalp was so bad. Gp referred to rheumy with potential diagnosis of psoriatic arthritis, which was then confirmed. Rheumy commented on my hypermobility, but wrote it off after i said i used to dance.

My mobility shot downhill, pain in knees, ankles, toes and back, as well as the hand trouble. Still officially psa, but most scans and xrays clear of obvious arthritis. I am now under consultants for cardio for the fainting, rheum for my joints and gynae for my prolapse. Yet it is mn that puts it all together for me, not my doctors.

Later, my rheum does give an official diagnosis of hms alongside the psa. My gp refers me over to genetics for confirmation of eds, after my ds's start to have the minor issues i was written off as a hypochondriac for as a child. Family history looking very positive for coming from my mothers side, but with me worst affected of everyone.

I am still waiting to see the genetics specialist, having had my initial info gathering appt. i have stretchy skin, multi-systemic issues and am still (though less so) hypermobile. I am in a wheelchair most of the time, now fainting about once a week, and in the worst condition of my life. I cannot wash myself, dress myself or cook anything, i cannot walk without pain. My joints now sublux a hell of a lot more than they used to, though i rarely fully dislocate.

It appears that it was the decline in my mobility due to the psa (which was in turn caused by the close together pregnancies effect on my health) that triggered the pain and a big lack of stability, though i have had problems forever that have always been ignored.

To add to all the doctors on the thread, i am a biology student who was hoping (originally) to study medicine after my kids started school. Weird. Looking rather unlikely now.

[BeyondTheTreelights]

I know i have missed stuff out, will add it as i think of it

And big big for all the others affected