[Angelina55]

I just can't take it anymore. It is getting worse by the day. I have developed a new symptom even. At times I feel like there is acid on my leg in spots. And I haven't figured out why or what is causing it. And the pain...OMG! It is a constant 24/7 intense 10. I am just tired of crying all the time. I can't catch a breather. I feel so bad for my daughter because she will accidently hit me and I like almost screem and start crying and I try my hardest to reasure her that it is ok but I know that it hurts her.

I get my results back from my phsyc evaluation tomorrow then if that is ok (which I am sure it will be) then I get my trial SCS thursday. But I have so many fears and worries. What if something goes wrong? What if it makes me worse? What if it doesn't work? I can't keep living like this with no support. A person with this condition can't do it all on their own. And I don't know how to get my family and friends to understand that. That I need their love and help right now. They just don't get it. They just think I am weak. That I am too old to need help. It just breaks my heart that no matter what I would be there for them but when I need someone, no one will help me. I don't know what to do.

I am sorry, I just can't sleep and am in sooo much pain. I just needed to try to "talk" to someone. To let it out. I hope everyone is doing better than I am! And I hope you all have a wonderful week ahead!

[SloRian]

I'm so, so sorry, Angelina55 I'm up late with some pain, too, but nothing as severe as you have

I know what you mean about your daughter. I vividly remember the day that my daughter looked at me and asked me why I was so mad. It was really ironic, because I was in a good mood! I asked her what she meant, and she said my face was all scrunched up. Thank God she mentioned it, because I realized that the "pain" look was almost exactly like the "mad" look, and I was able to explain that I was just having a bad pain day. Whenever my pain is worse than usual, I remind the kids that my face is from pain, and I'm not angry with them.

Anyway, "talk" away, and please accept a very gentle virtual hug from me. I hope you do well with the SCS - many people do.

[Brambledog]

Hi Angelina

I'm so sorry you feel overwhelmed by this horrible disease right now, it really is cruel, and other people really REALLY don't get it....terrible to not only be suffering so badly, but also to be misunderstood and isolated by it

I'm on a 'better' patch this last week, and it's been so weird. It's really made me appreciate quite how awful I was feeling before. I use to try and tell myself that I should be able to cope better and get on with a few things, but when it's at it's worst you really can only exist and hope for some relief at some point... I sincerely hope that your SCS next week can finally help - I appreciate your fears, but if you are at constant 10 of pain and not coping at all with it, then hopefully even some slight relief might make a big difference to you and give you some life back again.

Hang on in there... I know I keep saying it but it's all you can do for now... We'll all be thinking of you and hoping for good news very soon.

Don't ever feel bad about asking for some understanding and sympathy when things are so horrible - its lovely that you can reach out to us and know that we do understand. I'm nowhere near your current level of pain, but I can imagine it all too well, and I have nothing but admiration for your fight with CRPS and the way you are willing to help and support others here even when you desperately need help yourself

Oh the pain face.... I had to apologise to my youngest last night because I got frustrated and shouted at her. I explained that it wasn't her, it was the invisible pain that had made me angry, she was just in the wrong place at the wrong time. Sometimes you do flinch from a hug, or recoil from being touched, and it hurts their feelings....all you can do is explain, but it's so sad and adds to your misery of course.

A gentle virtual hug from me too, and a comforting hand-hold if you need it too... I'll keep hoping for you

Bram.

[catra121]

I'm so sorry you are going through this. This condition is hard enough to deal with when you have support...I cannot imagine what it's like without it. I really hope things turn around for you soon and that you are able to get both some relief and some support.

Angelina

I'm sorry you are suffering so much. Having a young child must make it so much more difficult to deal with this horrible disease.

I do hope that you get some relief from your pain and the support you need. It is so difficult to explain this disease to people. No one I know has ever heard of it. Even the two nurses who I spoke with in hospital last week had never heard of it - and one of those nurses was assisting the doctor administering the stellate ganglion block.

Please hang in there.

[89danboy]

Originally Posted by Angelina55

I just can't take it anymore. It is getting worse by the day. I have developed a new symptom even. At times I feel like there is acid on my leg in spots. And I haven't figured out why or what is causing it. And the pain...OMG! It is a constant 24/7 intense 10. I am just tired of crying all the time. I can't catch a breather. I feel so bad for my daughter because she will accidently hit me and I like almost screem and start crying and I try my hardest to reasure her that it is ok but I know that it hurts her.

I get my results back from my phsyc evaluation tomorrow then if that is ok (which I am sure it will be) then I get my trial SCS thursday. But I have so many fears and worries. What if something goes wrong? What if it makes me worse? What if it doesn't work? I can't keep living like this with no support. A person with this condition can't do it all on their own. And I don't know how to get my family and friends to understand that. That I need their love and help right now. They just don't get it. They just think I am weak. That I am too old to need help. It just breaks my heart that no matter what I would be there for them but when I need someone, no one will help me. I don't know what to do.

I am sorry, I just can't sleep and am in sooo much pain. I just needed to try to "talk" to someone. To let it out. I hope everyone is doing better than I am! And I hope you all have a wonderful week ahead!

Hi Angelina , I would really reconsider your scs, the reason being once you have it installed in your back,you will never be able to have an MRI ,even if its removed,the spinal wires that go with the scs are permanent.its a really big deal not to ever be able to have a MRI,also they usually are worthless and taken out anyway.im sorry you are struggling with the pain,I'm having a really bad time with my rsd,I have full body and it attacks all my organs,it's in my stomache rite now,I look pregnant from all the inflammation in my intestines,very painful.thers a dr in sandiego that is using kettamine nasal spray for her patients,I want you to go to her website and see how she is changing lives with this new form of ketamine,she also will tell you why not to get the scs.look up nancy l sajben md . On the Internet and go to her web page.sorry I will give you the address once I find it ,but if you look up her name you will be fine. It's better than the ketamine infusions which I had with dr schwartzmann .reason being cause you can give yourself your treaytments at home,she also uses ketamine losanges with the nasal spray,I hope you get releif soon ,I'm working with my dr now to order it for me,it's so new most drs don't know about it.im always here if you need to let out all the things you are going thru,and I can let out mine too,anywAy good luck Angelina. Soft huggs

[HeidiB]

Im So sry for the pain you are going thru, Im @ my 9yr mark living w/RSD so I know exactly what your going thru & how unbareable it truly is day & night. I have 2 girls my 6yr old only knows me this way but my 14yr old had a hard time adjusting to how much it changed not only me but us & all the things we couldnt do together like we had once done. Everyday is a fight w/in our selfs I have learned to just deal w/each day as it comes & only worry bout today not yesterday or tomorrow cuz I personaly dont know how I'll feel from one day to the next or how bad the pain's going to be etc.

I know its harder as time goes on not to mention more painful but if you ever want to talk hit me up & from what Ive seen this site is awsome the other peps on here w/RSD are so willing to help eachother out & it's made me feel less alone in the world honestly. I havent been well lately so I havent even gotten on the computer for awhile but today is so far a little better than I expected so I wish u happiness & hope you feel better soon, I'll be thinking of you & remember your a fighter & stronger than you mite think
~Heidi

Originally Posted by Angelina55

I just can't take it anymore. It is getting worse by the day. I have developed a new symptom even. At times I feel like there is acid on my leg in spots. And I haven't figured out why or what is causing it. And the pain...OMG! It is a constant 24/7 intense 10. I am just tired of crying all the time. I can't catch a breather. I feel so bad for my daughter because she will accidently hit me and I like almost screem and start crying and I try my hardest to reasure her that it is ok but I know that it hurts her.

I get my results back from my phsyc evaluation tomorrow then if that is ok (which I am sure it will be) then I get my trial SCS thursday. But I have so many fears and worries. What if something goes wrong? What if it makes me worse? What if it doesn't work? I can't keep living like this with no support. A person with this condition can't do it all on their own. And I don't know how to get my family and friends to understand that. That I need their love and help right now. They just don't get it. They just think I am weak. That I am too old to need help. It just breaks my heart that no matter what I would be there for them but when I need someone, no one will help me. I don't know what to do.

I am sorry, I just can't sleep and am in sooo much pain. I just needed to try to "talk" to someone. To let it out. I hope everyone is doing better than I am! And I hope you all have a wonderful week ahead!

[SloRian]

Originally Posted by 89danboy

Hi Angelina , I would really reconsider your scs, the reason being once you have it installed in your back,you will never be able to have an MRI ,even if its removed,the spinal wires that go with the scs are permanent.

I didn't know that! I thought everything was removable.

[chrisandrob4ever]

I have the scs twice and when they removed them they even removed the leads and wires. So I think that is all doctor based. But my first one worked I just need more leads. They but in a second one that had to be removed due to shocking me that was later recalled. My mother has hers and she is doing great with it. Having a little one I would say it would be a great benefit to you. Good luck

Angelima print this ut and give it to them, then let them watch this.

http://www.youtube.com/watch?v=MviVcjWZDts

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!