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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 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!

SparkleRainbow Wed 14-Sep-11 17:31:27

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.

TheHumanCatapult Wed 21-Sep-11 03:39:12


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

SparkleRainbow Wed 21-Sep-11 11:45:37

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.

TheHumanCatapult Wed 21-Sep-11 15:37:49

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

SparkleRainbow Wed 21-Sep-11 18:01:13

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

SparkleRainbow Tue 27-Sep-11 10:24:36

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.

SparkleRainbow Thu 29-Sep-11 13:22:47

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.

SparkleRainbow Thu 29-Sep-11 17:38:06

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!

SparkleRainbow Mon 03-Oct-11 10:15:27

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?

SparkleRainbow Mon 03-Oct-11 10:58:30

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

SparkleRainbow Mon 03-Oct-11 11:28:45

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

SparkleRainbow Mon 03-Oct-11 11:38:01

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

Catch up with you later.

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.

SparkleRainbow Wed 05-Oct-11 10:05:30

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.

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