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Old 25-11-2013, 03:39 PM   #421
Rodolphus
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Sorry to hear you've been feeling so rough, Caz :( Please look after yourself as best you can, lovely.

Are there any EDS/HMS kitties around? So many subluxation issues recently, I'm worried that it's weakening my connective tissues more and I'm just going to keep going round in circles. My wrists are becoming a problem for the first real time, and that worries me a lot. I can't bare to think of a time where I might not be able to draw again. I have my appointment with the EDS specialist and genetic councillor in January - I'm not looking forward to the 4 hour journey, but hopefully some good will come of it! :)

How goes it for everyone else?




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Old 25-11-2013, 09:41 PM   #422
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Anyone here with ME/CFS?

It's possible I may have it. I'm having blood tests tomorrow to rule out thyroid, anaemia and other things.

I get a lot of random pain, most of it in my joints or my leg muscles. The leg pain can get worse when I'm resting, but can hurt regardless of whether I've been active or not.

I get exhausted quickly. For instance today I went to the supermarket with my mum, and it wasn't even busy, and after about 30 minutes of walking around slowly I felt so ill. The exhaustion felt like it was deep in my bones and everything just hurt and I felt tearful because all I wanted to do was to get into bed and sleep, but I couldn't because I was in the supermarket.

I've not been to university in a month because I'm so tired. And after just 1 lecture I feel drained, achey/in pain and when I get home I feel like I've got the flu because I'm so tired, often leading to me missing the rest of the week.

I get lots of headaches too, and it's not my eyes because I've got the correct prescription glasses.

And there's obviously the mood swings/depression but that could just be my MH and not tied in to my physical symptoms.

I've also got IBS/general stomach issues/reflux/indigestion and have to take laxatives every day or I just dont go to the toilet.

I am on sedating medication, but I can distinguish between that and the exhaustion I've been getting. The sedation is like just feeling a bit tired in the mornings, whereas the exhaustion is like I've just ran a marathon and it goes right into my bones.

My GP said my symptoms could be explained by ME but I think he was kind of reluctant to talk about it, he said I'd need the blood tests first and then we'd see, but he said there's no tests or treatment for it any way so I feel kind of hopeless if it does turn out to be that.



Isn’t it funny how day by day nothing changes but when you look back, everything is different…

you once called your brain a hard drive, well say hello to the virus.


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Old 25-11-2013, 10:08 PM   #423
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Hey lovely,

I have ME, as do Caz (The Stolen One) and Sarah (Cryptic.) and I think there are a few more of us - you're not on your own. I was diagnosed almost 4 years ago, if you've got any questions, I'm happy to answer as best I can.

There may not be a cure or many specific treatments for ME, but please don't think that it's the end of the world. It's all about learning what your warning signs are, what your body responds to best and lots of patience. I have a lot of symptoms pretty much all the time, but I manage (most of the time) to lead a carefully productive life that makes me happy. An ME diagnosis doesn't mean that your life has to stop, you just have to smell the roses, that's all.




Now I'll play your ghost as my ace, whenever I'm led astray.
But I am actually good, can't help it if we're tilted.
I'm in my right place, don't be a downer.


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Old 26-11-2013, 12:20 AM   #424
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Some of your descriptions fit me perfectly!
I'm at uni, but some medical people have told me not to be because it makes me so ill but others accept that I'm going to be here regardless! It's far better to listen to your body and take time out than my approach though, you're doing the right thing! When I'm in uni for a lecture that's all I can do in a day and I suffer for it but I really love my course, I can hack being this ill if at least I have one positive aspect of my life!
Uni have been brilliant to me, as have the medical people who understand why I'm here! Thank god my doctor is okay, he just advises me to not go to lectures which aren't important and so on. Just talk to them :)

Like Marie said, it's not the end of the world... It sure as hell feels like it most of the time at the moment though! You can improve a lot with stuff like routines, pacing etc

Same as Marie, I'm happy to try and answer and questions or here to listen if you need to vent - here or PM



There will always be a happy ending. If its not happy then its not yet the end.
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Old 26-11-2013, 11:03 AM   #425
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My pain levels are at about 11, and my pain tolerance is at about 97%, if I get any worse today, I probably will cry and want to shout a lot.

Never mind - onwards and upwards!

I hope you all have a stressless day :)




Now I'll play your ghost as my ace, whenever I'm led astray.
But I am actually good, can't help it if we're tilted.
I'm in my right place, don't be a downer.


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Old 26-11-2013, 11:28 AM   #426
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Like the lovely Marie said, if you do have M.E, it's not the end of your life or the world. It's all about coping with the symptoms, knowing if it's a bad day, knowing your limits, pacing yourself, not doing too much if you are not able to, if you have a good day, not to overdo it as it'll knock you down for the count, balancing things, etc.

As Marie said, there is no cure or specific treatments, but that doesn't mean you can't still have a life.

I think when you have a chronic illness, it does make you more grateful for the small things that others take for granted and are incredibly lucky that they can do, simple things like having a bath, going for a walk, going into town for just half an hour, on really bad days, just getting out of bed, walking around the house, tolerating light/noise, etc.

I try to look at the positives with what my illnesses have given me, such as compassion, empathy, insight, it makes me more appreciative for good days and the small things in life, etc.

If you do have M.E, there are lots of us about if you want to ask questions/need support/advice, or just to feel less alone.

There are M.E specialists in the UK, so it may be that if you may have it, they might refer you to one, so that could be useful, too.

Sending love your way.


Marie - *beats up your pain* That'll teach 'em!!! Try and rest plenty today lovely, relax yourself and do things you're able to do, also lots of liquids and keep your strength up. I'm sorry it's such a bad day. *cuddles gently*
xxxxxxx



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Old 26-11-2013, 12:12 PM   #427
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i'm having absolute hell with my endo at the moment. in agony after oramorph on top of my normal painkillers. barely sleeping. feeling really ill because i'm so tired. anyone have any wise words for sleeping or anything?

i am trying to get a doctors appointment to see if anything can be done with my painkillers but its proving difficult at the moment.

ta if anyone can help. :(

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Old 26-11-2013, 03:22 PM   #428
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Thanks everyone. I was at the GP today for a skin condition that just randomly started, and she made me tell her everything that's been going on, and without reading my notes or me telling her what the other doctor said she said it sounds like I could have CFS, and that basically they've just got to wait for my blood test results (had it done today) first.

I feel like crying because I'm so tired and my legs are still hurting.

I told my mum about the possible CFS and she just said "well there's no treatment for it so you'll just have to be tired all the time, you can't stop going to uni. If I got CFS what would I do? I'd have to work or who'd pay the bills?" I tried explaining that some people with severe CFS can't work and such, but she wont listen. She never listens to how bad I'm feeling and always makes out like I'm being lazy.

I do want to graduate uni but she doesn't understand how hard it is for me right now, on top of my physical stuff my bipolar is being all wonky and I'm just starting a new mood stabiliser, and just been diagnosed with BED but the ED team discharged me straight away.

How were people here diagosed with CFS/ME? How long did it take? What sort of tests did you have to rule out other symptoms? Were your GPs understanding or keep trying to palm the symptoms off on mental health?



Isn’t it funny how day by day nothing changes but when you look back, everything is different…

you once called your brain a hard drive, well say hello to the virus.


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Old 26-11-2013, 05:22 PM   #429
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I've been taking into hospital and the junior doctor assessing me doesn't know what m.e is! I told her I've been feeling like I'm going to hit a flare... She doesn't know what one is! Grr. The doctor who called the ambulance agreed it's probably related because it's my heart rate which is the issue and it's been going on a while.
Frustrating! I don't feel like I'm going to get anywhere! We shall see though. Have to wait for tests before I know what's going on

I've had an nhs diagnosis and a private one with bupa
Nhs gave me blood tests.. And probably more I've forgotten but they were the main. It helped I had glandular fever before because that's one of yur known triggers for m.e. Took a month or so?

For bupa I had a brain MRI, nerve and muscle tests. That was quicker because they do everything at speed!!



There will always be a happy ending. If its not happy then its not yet the end.
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Old 26-11-2013, 05:53 PM   #430
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Hey I'm Lauren. I have IBS and I've just started going back out after hiding in my house for a year because my psychologist says I have to. I'm not really dealing with it well though. I have to go out on Saturday shopping out of town and I really want to back out because my stomach has been bad this past week but I can't cause its Christmas shopping :/



“Never forget what you are, for surely the world will not. Make it your strength. Then it can never be your weakness. Armour yourself in it, and it will never be used to hurt you.”

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Old 26-11-2013, 06:54 PM   #431
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Sorry to hear you're in hospital Caz. I hope you get better soon.

If you dont mind me asking how expensive was it at Bupa or did you have insurance? If the NHS are going to treat me nicely (and not suggest I am a hypochondriac like one GP did just before I was diagnosed with IBS) then I am happy to remain there, but Bupa would at least do things quickly but I dont have any money.

Hi Lauren, I have IBS too. When I travel I carry Imodium, baby wipes and a fresh pair of underwear in case of accidents and it helps to calm me. I've not actually had any accidents yet, but a few times have had to use toilets in various places in an emergency but the Imodium works quickly.



Isn’t it funny how day by day nothing changes but when you look back, everything is different…

you once called your brain a hard drive, well say hello to the virus.


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Old 26-11-2013, 10:16 PM   #432
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You usually would be assessed by a specialist in M.E, it can take a while, because they have to do a lot of other tests to rule anything else out, so blood tests is a good start.

Sometimes a lot of professionals, even those specialist in M.E, will palm it off to MH problems.

I've experienced that a lot unfortunately , but there are some out there who don't even think about your MH and don't just use your MH as some excuse for your symptoms.

If your GP thinks you may have M.E, then they'll likely refer you to a specialist, or at least they should do!

It may take some time and MUCH patience, but I hope you'll get your answers ASAP lovely.

We are here for you, too, in the mean time.

Lots of us have M.E and are always here for you if you need/want to chat.

xxxx



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Old 26-11-2013, 11:02 PM   #433
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I didn't get referred to a specialist with nhs, but then again maybe if I asked I would. I got referred with bupa but a neurologist diagnosed me. We had insurance with bupa through dad's work, but the minute I got the m.e diagnosis they stopped treating me because I'm 'chronic'.
It would have cost SO much, I saw some of the prices and omg! I saw the cost for an MRI but I had two in theory because I had head and neck it it was in the 10,000s. Me and dad were gobsmacked!

How you doing Marie?

I don't have it Lauren but wipes and underwear sound like a brilliant idea for some piece of mind!!



There will always be a happy ending. If its not happy then its not yet the end.
Spongebob


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Old 26-11-2013, 11:04 PM   #434
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Thank you both

Sarah I did add you on facebook I hope that was okay (im Sarah too)

Bad night tonight pain wise



Isn’t it funny how day by day nothing changes but when you look back, everything is different…

you once called your brain a hard drive, well say hello to the virus.


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Old 26-11-2013, 11:47 PM   #435
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I haven't had an accident in ages, its more the gas side of it. But a spare change of clothes sounds like a good idea so ill do that thanks. I don't tend to take imodium as I've got prescription stuff from the doctor so i might take them with me just incase. Although i tend to freak out and take them just incase before anything is happening and it usually just constipates me.



“Never forget what you are, for surely the world will not. Make it your strength. Then it can never be your weakness. Armour yourself in it, and it will never be used to hurt you.”

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Old 27-11-2013, 06:27 PM   #436
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Hey lovelies, I hope today is a calm day for you all :)

Today, my knee subluxated, I fell and smashed the screen on my phone . I'm struggling a bit with feeling very angry with my body. Now my knee is throbbing and my phone is broken.

How's everyone else?




Now I'll play your ghost as my ace, whenever I'm led astray.
But I am actually good, can't help it if we're tilted.
I'm in my right place, don't be a downer.


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Old 27-11-2013, 08:17 PM   #437
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I hope you feel better soon :(

My new meds have knocked me for six. I don't feel like myself and it's weird.



Isn’t it funny how day by day nothing changes but when you look back, everything is different…

you once called your brain a hard drive, well say hello to the virus.


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Old 27-11-2013, 08:20 PM   #438
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Sorry you're feeling so rough, Sarah, I hope that it lifts soon and you feel more like a human again.

Thank you for your well wishes :)




Now I'll play your ghost as my ace, whenever I'm led astray.
But I am actually good, can't help it if we're tilted.
I'm in my right place, don't be a downer.


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Old 28-11-2013, 02:35 PM   #439
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Sending massive gentle cuddles to all who are struggling :(
*sends fairy dust to make it all go away too!*
I'm just so awesomely magical that way :P
xxxx



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Old 28-11-2013, 03:37 PM   #440
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has anyone taken nefopam? does it have bad side effects? nervous about taking it, noones heard of it so i'm iffy bout it. >.<

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