24yrs old and living with CRPS, Fibromyalgia and Chronic Pain Syndrome

[Michaela88]

This is my first time on any sites like this, so really just looking for people with similar problems to share any information/experiences with. I am currently taking pregabalin at 600mg a day and have been for almost two years now, I also take dihydracodine and have to get lidonocaine infusions every 4 weeks. I have put on weight with the pregabalin and I know this is common side effect of this pill but can anyone share tips of how to loose weight as it is really lowering my self esteem and confidence and is definitely something that needs addressing. My family are great most of the time but they have no idea really as to what I have to cope with on a day to day basis and I think speaking to people who understand it better might help me. So please feel free to share any information you have about dealing with these kinds of problems. Any information/experiences will be greatly appreciated. X

[rcwallace21]

I have cerebral palsy and I am 22 and have chronic pain. I use 200mg of pregablin per day and co codomal 30mg/500mg. Pregablin does make you put on weight - no easy answer - I swim and box and try to eat as healthily as possible. I had to have a lidocaine infusion post operation, I did not get on with it and had to stop using it. I find lidocaine patches help and also TENS and heat plasters. I'm on a waiting list to have acupuncture through the pain clinic.

Pain is a very personal thing but I hope this helps.

[Hidden]

Print this out and give copies to your family

Please read my life with RSD/CRPS

These are the things that I would like you to understand about me before you judge me.

Please understand

that being sick doesn't mean I'm not still a human being

I don't feel well often times and I might not seem like great company, but I'm still

me stuck inside this body.

I still worry about my kids and work and my family and friends, and I'd like to hear you talk about yours too.

Sometimes I want to talk about my illness sometimes I don't, so please don't roll your eyes when I talk about my pain and please don't pressure me to "get it off my chest" when I just want to pretend it doesn't exist.

Please Understand

the difference between "happy" and "healthy".

When you've got the flu you probably feel miserable with it, but I've been sick for years.

I can't be miserable all the time, in fact I work hard at not being miserable.

So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired I may be in pain. I may be sicker than ever.

Please, don't say, "Oh, you're sounding better!" as if I'm healed. I am not sounding better, I am sounding happy. Tomorrow I may sound worse again.

Please understand

that being able to function for an hour doesn't necessarily mean that I can keep it up all day. Doing everyday things, that everyone else takes for granted, exhausts my resources and I need to recover.

Imagine an athlete after a race. They couldn't repeat that feat right away either.

With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing. Maybe today, I can handle work and home, tomorrow it may be one or the other but not both. There is actually a name for this it's called postactivity payback and it sucks.

So, please try to keep in mind that I don't function like everyone else and just because I can do it today doesn't mean I can do it everyday.

Please remember

that the above paragraph can apply to just about anything, "sitting up", "walking", "thinking", "being sociable", and so on it can apply to everything that requires physical or mental effort. That's what a chronic pain illness does to you.

Please understand

that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen.

Please don't attack me when I'm ill by saying, "But you did it before!".

If you want me to do something, ask if I can and I'll tell you.

In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand

that "getting out and doing things" does not make me feel better, and

can often make me seriously worse.

Reflex Sympathetic Dystrophy may cause secondary depression (wouldn't you get depressed if you were always in pain and exhausted?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.

Please understand

that if I say I have to sit down/lie down take these pills now, that I do have to do it right now, it can't be put off or forgotten just because I'm doing something. RSD/CRPS does not forgive.

Please understand

that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well, But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better.

It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness. I will go about the business of living, but I won't necessarily be happy about it either so please try to understand that there is a reason I'm a little crabby sometimes. I can't just hide in bed with my head under the covers because I don't feel good everyday. But I sure have tried to do just that.

Please If

you want to, you can suggest a cure to me, but please don't act as if

it's going to be my salvation. It's not that I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest something at one point or another. Typically, it's just the same old snake oil in a new package.

If there was something that cured, or even helped, people with RSD/CRPS then we'd already know about it.

There is worldwide networking (both on and off the Internet) between people with RSD/CRPS, if something worked we would KNOW.

I'm happy to hear what you have to offer and if it's something that I haven't heard before, I'll take what you said and discuss it with my doctor.

Please understand

that getting relief from an illness like this can be very slow if not imposable.

People with RSD/CRPS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

Please understand

that if I pull away from a touch or a hug. Its does not mean that I am anti-social. Or that I don't like you. It simply means that my body's ability to enjoy touch has changed and I am unable to greet people in a normal mater because of the chronic burning pain that RSD/CRPS causes.

I depend on you - people who are not sick for many things. But most importantly, I need you to understand me.

THANK YOU!

[Michaela88 in reply to Hidden]

Thank you for this post. It sums it all up very well and I will definitely show this to my family as I think it is important for them understand as best they can. They do and say exactly the things you have said and a lot of the time I feel they are judging me or they give the impression that they don't think I am trying hard enough (which makes me feel weak at times) and I like to think that I am strong and I am willing to try anything to help better myself but some days it is hard. Thank you again. X

[johnsmith in reply to Hidden]

Thanks for the post. I dont have RSD/CRPS. I do have other conditions which leave me with chronic pain. What you describe is sort of what I live with even if not exactly.

I have given up on other people understanding me.

[Hidden in reply to johnsmith]

well at least all of us appreciate the struggle it takes to cope with pain on a daily basis and have people not understand us keep your chin up the sun will shine again eventually

[Hidden in reply to Hidden]

Wow, reading this has really touched me emotionally! I finally can see someone else who feels like me.. although that's not a good thing because of pain it does inspire me that there are people out there living with feelings like mine and dealing with pain and having to cope with people not understanding...

[lucymockingjay in reply to Hidden]

Thank you so much for sharing that. I have lots.of medical conditions too and although I am now bed bound i still have to contend with carers coming in and telling me how much 'better I'm looking' sometimes. You feel as if u can't contradict them because it makes you sound like you don't want to feel more well or something when it's actually a lack of understanding on their part about the complexity of my conditions.

My main thing I wanted to share though is my daughter has some of my conditions as they are genetic and many more besides including syncope and ME so your words particularly touched a nerve as so many people lack understanding around her conditions which can be so upsetting especially when they think she looks fine and don't realise the constant pain and exhaustion from the eds and the me not to mention having Neuro conditions and Pots on top of that so is always dizzy. Even health professionals don't get it though.

I tried to get script refilled the other day as she had been prescribed codeine be a hospital consultant as it's the only med that works with her pain as not many pain reliefs have any effect because of her eds. The go refused to prescribe it and said to take paracetamol instead! Absolutely clueluess! She only takes it when pain prevents her walking so it's not like she takes them everyday but he hung up on me when I said she really needed it! Then again in the past he's refused to talk to me about her even though her notes clearly say she has given permission for them to talk to me as she doesn't like talking on the phone to them.

We need to change doctors!

I am going to copy out your words of that is ok and make them appropriate for her illness so hopefully they will understand a little better. That she isn't being difficult when she doesn't want to talk as she is too tired too function a lot of the time. Your words make perfect sense to anyone who is affected or who truly understands someone who is affected with a variable and debilitating condition so thanking you one again.

Love and hugs for sharing

Take care

Lucy

Xx

[Michaela88]

Thank you for your reply. I have had the lidocaine patches and TENS machine which didn't have any effect unfortunately. I also received acupuncture for a bit but the only thing that helped with was my sleep (which was nice) I have also had a nerve block in my arm and in my neck and neither of these worked either that's when I started to get the infusions which i have had 9 of now they do help to take the edge of for a few weeks now (my first 4 didn't have any effect but I was told that sometimes it takes awhile to take effect). The pain never goes away and obviously having fibromyalgia I have days where my pain flares right up. I am due to get my infusion tomorrow and looking forward to having a bit of relief again as last time I thought I hadn't worked but turned out I was suffering from a kidney infection. Just feels that it is always one thing after another which I'm sure you can relate to. It gets me down quite a bit just now and my weight has a lot to do with that so any advice is great, cause at least it's something that I can address and hopefully make better. X

[Hidden]

Some things you need to be aware of. No Ice, No Hot and Cold water Contrast Therapy, No Aggressive Physio, these are the 3 worst possible Treatments and can all make things a lot worse. I iknow of 2 UK sufferers whose circuklation was so badly damged by the first 2 that they developed gangrene and had to have amputations to save there lives but the operations hastened the spread of their RSD.

Once you have this the slightest trauma can cause it to spread of start at the site of the trauma. My first spread was caused by the use of a sensitivity pin 4ins outside the affected area, cuased the RSD to spread from the wrist upto the elbow.

7-8% of use get wounds that may never heal, you can still see acupuncture wounds on my hand from 19/1/2010 and there are unhealed Flying Ant bites from 22/7/2011 on the back of my leg.

[rcwallace21]

Yes I know - I have had 3 operations in the past year and it is one thing after another because it gets more complex- injections don't work etc so more invasive techniques are used. I'm lucky that I have a good relationship with my dr. However I sometimes think that I want to be a care free 22 year old! I swim and enjoy it because it gives me relief and freedom of movement. Hope your infusion is ok.

[Michaela88 in reply to rcwallace21]

Yeah I have a great relationship with my GP and also my pain clinic doctors but my orthopeadics don't seem to care to them i am just another number a patient to get in and out as soon as possible. It's like they don't seem to actually realise that it's my (someone's) life they are talking about they just tell me it's not a short process. I think I know that after 5 1/2 years of hospital appointments here, there and everywhere. I know what you mean I would love to be a care free 24 year old but unfortunately we have to get up everyday and deal with our own stuff. The one thing I hate the most though is when people don't understand and their answer is always "there are people much worse off, so you have to think its not that bad considering" only someone that doesn't understand what a life of pain, pills and more pain is. I am going to start going swimming more often it is a nice relief and freedom of movement and of mind as well. X

[rowantree]

Kevscar that was a great post. (Please understand). Thank you

[Treacs]

Thank you Kevscar for the Please understand post. Summed it up in a fantastic way. I have CRPS following a very bad ankle fracture. I'm on Pregablin amongst others, and am facing the weight increase problem also, talk about these things are sent to try us!

[Hidden]

If any of you live in the UK then please help with this

My MP is going to ask parliament to debate our situation/condition after the Easter break, on his own he is unlikely to succeed so if you want the government/health dept to do something to prevent others going though what you have please e-mail your MP today.

Tell them the name of this condition. That it is the worlds most painful incurable one and as much of your story as you are comfortable with, at the very least tell them how long and how many doctors before you were diagnosed. That 95% of the NHS have never heard of this condition but according to figures in a paper published by the Royal College of Physicians last May there maybe 480,000 sufferers on the UK and less than 20,000 have been diagnosed That is approx 760 undiagnosed for every MP.

Ask them to read these links and spare 5 mins to watch the video.

rsdhope.org/crps-symptoms.html

rsdhope.org/mcgill-pain-ind...

youtube.com/watch?v=MviVcjW...(Not working as expected?)

Tell them that Iain Stewart is going to call for a debate on this after Easter and ask, beg , plead whatever you feel is appropriate that they contact him ASAP to offer their support in anyway they can.

Please don’t think I’ll do it later do it right now.

Kevin

[ColleenAdams]

Hi,

My name is Colleen and I'm a Documentary Film student in Wales. I'm starting work on a film to pitch to BBC THREE about Chronic Pain Syndrome, and I'm looking for more people who might be interested in talking to me about their conditions. If you're 18-24 and are interested in being involved, then please send me an email! It sounds like some of you have great stories to tell.

Thanks!

[e-mail]

[Hidden]

Hi Colleen,

I have sent you an email. I would be more than happy to participate. Anything to hep educate people on this cruel disease and give other sufferers hope in knowing that they are not alone has got to be worth it. I have lots of appointments with different specialists at different hospitals that you could accompany me to if but to gain a little insight into what we have to go through and treatments that we have to endure on a daily, weekly and monthly basis. Please let me know if you would like to speak with me.

Kind Regards

Elle x

[WinterHope]

Hi, I'm sorry you have to deal with all this while so young. I was diagnosed with fibromyalgia when I was 50 years old. My gp had put me on stating drugs, and on one particular office visit, she'd gave me another station drug on top of what I was already taking. My cholesterol is over the moon..

Anyway, within a week of taking both statin drugs, my calves were feeling like they had spasms. I went back to her and she dropped the new statin drug, but it left me hurting, and as time went by it started hurting everywhere. I'm not saying that my fibro was medicine induced, but the coincidence is remarkable. I'm taking hydros 5/325 up to 3x day.. If I didn't have my pain meds, my quality of life would be suffering. I try not to push myself. Just taking a 3 hour car ride and working out in my yard can cause awful pain for me. I also have bilateral hip bursitis. Between the two, I sometimes get really frustrated. I just hope that you feel better soon.

😊