Hi Everyone,
I know its been a while since I have been on here but I have had a lot of things happening for a while now.I just have a couple of questions for you all and maybe you can help me.
I haven't been on the site for one big reason. For a month and a half I was literally on my back due to major lower back pain. I woke up one day feeling like my hip was out(which will happen on occasion cuz I have a bad hip) so i went to a chiropractor. I seen him 3 times out of 6 days and it didn't help. I was in so much pain I ended up going to the ER. I went to the ER 5 times and still couldn't stand without major pain.When I had to go to the bathroom was the only time i got up due to the pain and that hurt like the dickens. The ER finally decided to send me to my pm doc. He gave me 2 injections in the lower back and sent me home. After about 4 days I was finally able to get up and walk very little but at least it was progress. I had to see him in 4 weeks 2 more times once every 2 weeks for my injections. I am now doing better but still a bit worse than what I was before all this started. When the chiro tried to pop in between my shoulders he bruised my sternum so i thought and the last 2 visits to the ER was a nightmare.I couldn't hardly move but the nurse on duty (which seemed to be the same one everytime I went in) decided I wasn't moving fast enough to get out of the wheel chair to get to the bed so she just yanked me out and boy did i scream bloody murder in her ear.She also expected me to take a pill and drink water with it while lying flat on my back. What fun that was,not. I had water down the front of me. Ever since the chiro my sternum still hurts and can't get it to heal and my right side just under the breast to my side hurts still to this day. It has been over 3 months now and don't know if rsd has just set in or not. I am scared that it may have.sometimes it hurts to breathe,stretch and move to the right.Has anyone had an experience like this as far as the pain goes? My legs haven't been the same since. They feel like they are going to sleep on me alot so they are very shaky and weak.All since just waking up one morning and just out of the blue having back pain. Also since all this my right shoulder has been hurting non-stop. My rsd had started in my left hand and arm 7 1/2 years ago due to a work related injury.Is this something normal to happen? Is it rsd trying to be a devil again?
Also my parents don't believe me when I tell them what is going on with me. I didn't go to there house for Thanksgiving cuz I was still working on trying to heal my back from whatever made it the way it was in the first place.My parents thought it was just another excuse to not go to there place. I am so hurt with them not believing me. I haven't made this disease up. It is a real thing and if they would just do a little research they would see that I am not making it up. My brother and sisters just gave up on me because they couldn't deal with me the way I am now, they don't know how to handle it so they took the easy way out. Is there any way I can get them to believe me? I have always been the blacksheep of the family but that shouldn't matter this is a real disease. With me being so hurt by my family I just feel that I don't know if i can face them anymore due to how they have made me feel. Am I wrong? They just want me to put on a happy face when I am there even if I am not. i can't fake being happy if I hurt. I didn't go to there house for christmas due to us living in the country and having 1-2 inches of ice on the gravel and not leaving due to the roads, but even if we could have made it I still felt like not going because I can't face people who don't believe me and who can't deal with who I am now. Is that wrong and does that make me a bad person? I don't know if I will ever be ready to face them which hurts me very badly.
Not only is my biological family feeling the way they are my husband admitted to me the other night that he stays out on the road and stays as busy as he can due to my disability. But it is only part of the reason he says. He says he can't deal with it either. Am I hurt yeah very much but I love him. We have been married for 16 years and been together for 18 years. You can't just give something like that up. I have had a few people tell me to leave him but I can't because I still love him. How do I deal with something like this? It hurts me so bad but I can't show it because he will ask,"Now what is the problem?!" So I have to keep it bottled up no matter how bad it hurts. I just don't know how to deal with it as well as deal with my rsd and all the other sress in my life.he says he still loves me. Is he for real or is he not? I don't know anymore. I am so confused. If anyone can help me please do. I am begging for help. Thank u.
You all have a Happy New Year! Thanks again for reading my rambling.

Sincerely,
Tracy

It is so sad when our families don't understand what we are going through. Your pain is real and is very tough to deal with. The stress of it also makes it worse. Is there a person outside of your family you could talk to just to get it all out? Maybe someone at a local church can help direct you who to talk to. Sometimes just letting someone know how much you are hurting and them just listening and no trying to fix the problem reduces the stress levels and in turn we can handle the pain better. The people we think should understand what living in pain is like disappoint us and it does hurt. So we have to go outside of that and find other people to help. Try to do it before your marriage takes more stress on. let us know how you are doing and what has helped. Tomorrow may be a better day.

I agree, Tracy.

You need to get the stress of off the relationships that are important to you!
I've 'lost' lots of loved ones to it, and it's really painful.

You can't deal with things if you're in that level of pain that you describe.
You've got to get that under control once and for all!
Nobody MRI' your spine, or did any other relevant tests?
Unfortunately, for us and the general population, our health tends to get worse as we age, not better. And, people find it easy to be cold about things they can't or won't understand.

I hope you can get to a caring doctor, who will manage your pain better! It seems to me that you are under treated. Do your best to find a real good doctor, because until you do, you, and those around you will suffer.

I really hope the best for you!

pete

Hi Tracy, I am so sorry for your pain, both physically and emotionally. I wrote you earlier today, but accidently erased it before it went thru. NOT GOOD!
Have you ever been in counseling? Most of us need it to grieve our loss of health and the other issues that come up with our families etc. There is just no way 'others' can understand what we are going thru. But there are communication skills we can learn to help get our feelings across. Self-help sections in book stores have some wonderful books. I went thru 2 plus years of counseling when my parents died. I'm in my 6th year with a wonderful psychiatrist for my full body RSD. I see him once a month, but went anywhere from 1-3 times a week back in the 80's. It was a blessing.
This wise Dr. also is a neuro, pharmacologist, so works with my meds and has helped me grieve thru the losses. I have used journaling both times, and feel that is a wonderful tool. My best friend is a counselor, so we talk alot too. We need compassionate friends. Do you have a local support group near you? RSDSA has lists if you give them your zip code.
You need support and loving compassion-hopefully you can find someone you feel comfortable with. Good suggestions from others that have already posted. Take care of yourself- loretta with soft hugs

Ada,
I'm still feeling your pain..
(I forgot to take my aricept for two days (altzheimer's med) for my brain injury, and I get loopy, without it. Forget the topic, and write stupid things as above, and look stupid.)

It's awful, to get a tbi on top of rsd, mine is since 98, on top of rsd since 83.

I hope you choose to learn about it.
Here is the national brain injury website, with links to individual states.

http://www.biausa.org/

I hit my head right straight into the windshield frame of a top down convertible, (passenger).
Click click, I herniated four discs. I have all sorts of sleep anomalies. Apnea too.
The rsd pain level shot way up as well.

I know you have lots going on, I'll try to write to you more, please keep us posted?

My prayers for you, Ada!

Pete

Ada,
I'm so sorry you are having to go thru this. I wish I could make it better for you. PM me and I'll talk to you, either here or on the phone. I also sometimes think ppl think I'm making this up. It's hard. I just don't hang with the ones that have told me that it heals itself and it gets better, and that I should be better now. That's just me. I have had the pain pump trial and once they found the meds that worked, it worked better then I could have hoped. It took my pain down from a 8-9 to a 2, maybe a 1. I get the perm unit Jan 19th. I've spoken to many many ppl who have this implanted, both for rsd and back problems. They love it,(yes there are some , very very few, who don't have luck with it). Once in you have most of your life back. I have horses and I will be able to ride them again with the pump. I have had 2 scs and they don't work very well for back pain. My rsd started in Left foot and has spread due to the scs surgeries. A lot of drs don't want to put in the pump. I've had to find a dr 3 hrs away in Md. that does it. Why??? One big answer is that with the pump you develope a relationship with your dr. It involves long term care. You know, adjusting meds, refilling the pump, etc. With the scs the dr. puts it in and once the staples are out they are done with you. they get the money and are done with you. Just give it a thought, and if you have to, call around till you find a dr that will talk to you about it, and even give you an inhospital trial to see if it works. If it does, wonderful, if it doesn't at least you know.

Hugs
Mary
PS. the pump trial didn't hurt, even surgically. the scs trial had me in pain, in bed, for 3 days before I could get up and try to walk.

This is weird, these last two posts, the first of which is mine, (which I though I lost), and reposted, they're from Ada's post.
Not Tracy's.
I see that lostmary's came here too....
Hmmm.

pete

You may have something more going on in your back then just the RSD. I would ask for some test. I woke up one morning and couldn't get out of bed due to my back. I have osteoarthritis in it and some bad disc. I spent months in PT and tried to take meds for it and couldn't do it. Don't just assume it's ony the RSD.

I do hope you try and find a councellor. We need someone to talk to when others aren't listening. Luckily, my daughter takes care of a lady with MS and me so she knows what I am going through but she didn't at first.

Somehow we have to teach our family about RSD. Ask them to come here to read or send them links about RSD so they can read about it.

Somehow we have to get past the fact that they don't want to understand it, if they don't. What I have noticed in today's world is that everyone is so consumed with what they are going through that they don't have time to learn what others are going through. People today seem to be missing a sensitivity chip. They just don't seem to care what is going on with others. Hopefully there will come a day when people get back to caring about others.
Luckily you can come here and talk to everyone here but you do need someone in person to talk to. Seek out a Councellor.

Hope you feel better soon and glad you are back.

Ada

First off I want to thank everyone for my rambling. It really means so much to me.
Yes I do have a psychiatrist and a psychologist that I see every 2 weeks for the one I talk to and the other for meds I see every 3 months. The psychologist(which is the one I talk to I think, but not sure. That is the one I and talking about) is the most wonderfullest person for me. I love her to death and wouldn't trade her for nothing. She is doing all she can to help me. I just haven't been able to tell her about my hubby yet cuz i don't see her til after the holidays so I just cry to myself and I try to do that when no one is looking. Yes I have a friend outside the family but I don't talk to her much cuz she runs a book store near where I live and that is where I see her when i go.But she is also having health issues herself right now so very hard to talk when we are both not doing to good.Don't get me wrong I love her to death and wouldn't trade her for the world either it is just hard to talk when we don't see each other very much.
As far as a support group I don't know of any around me. I will check it out.Thank you for that information. I have tried different books and I can't seem to find the right one to help me yet. If anyone has any names or ideas please help me by sharing them with me. i would greatly appreciate it.
As far as MRIs I can't get that done now because i have a scs implanted in me. I can't and haven't been able to use it for a long time due to the fact here just before I started having back trouble I tried to get the scs reprogrammed again for what seems like the umpteenth time now for along time. I had it put in in Dec. 2006 and havent been able to run it since Feb. 2007. i had a car reck then where my daughter and i got rearended by a teenager after my daughter had stopped for a bus. my scs hasn't been right since. I went to my pm doc the day after the accident knowing that there was a chance that my leads were jolted cuz the night before when I got home I turned it on and I wasn't getting stimulation where I should have. They reprogrammed the next day and it seemed ok at the office but when I got home it didn't seem right. I can't explain it. I haven't run the scs ever since. I kept calling the pm doc about it and evey time I turned around I was having to go and see the woman from medtronics to try and get it reprogrammed and it seemed ok at the office but when i would get home and turn it on it didn't seem right everytime. I couldn't figure it out. Well just before my back prob I had tried to get reprogrammed again and everytime she would try to reprogram it I felt like it was going directly to my spine and it was burning my spine like crazy and I would tell her to shut it off and tell her what was going on and I finally was sent to see my pm doc again and he did some special what he called mri on my leads and found out that my leads are not on track that they have been moved. They need to take out the old ones and replace them with new ones cuz of them being what he said in records twisted and moved up by the neck area. THe office sent an approval letter to wc to get wc to approve it and it has been well over 3 months and still haven't heard anything from them so I still sit with no replacement and no running of the scs. I don't understand wc approved of getting scs implanted but they won't approve of the upkeep? What the heck.
For my back I think my pm doc called it something to do with neuropathy sometheing. Can anybody help me by explaining to me what the word neuropathy has to do with my lower back? I don't understand what that word is.Is that a bad thing in my case or not?Is it another way of saying I have something else wrong because of this monster rsd? I am so scared with everything.I know i shouldn't freak out but it just seems that everything is bombarding me at one time and I don't know if i am strong enuff to handle it all. I am really trying but I don't know how much more weight my shoulders can handle.
I am so sensitive to so many things lately. Is that normal? I feel like a big bawl baby. Especially when I seem to be rambling on and on about my problems when you all have your own problems. I am so sorry. I guess I am just hurting so bad right now.
To know that my family don't even want to try and understand what is going on is very painful. They are suppose to be there through thick and thin so I thought. I have been no matter what my problems have been and are today,but I just got to the point where I can't take it anymore. I have tried to send my family information on my disease but whether they read it or delete it I don't know. I just know what I heard and they just don't understand so they are giving up on me. My hubby hasn't given up completely but I don't feel he loves me anymore. I just want things back to what they were before i got hurt. I know I can't have that I am who I am now and it scares me.I am so afraid of losing my husband and then having nothing. I will have my daughter because she is really trying to understand but she shouldn't have to babysit her mom. She is just 14 yrs. old. How fair is that to her? I just want back what my husband and I were like before I got injured. I just feel like emotionally he is not there but he says he loves me. Like I am so sorry for rambling like this I just feel like I am a complete mess and don't know how to get back on track so I am not so angry with my disease.I keep dropping things and I just tell my self that I am stupid or I will just blurt out "Stupid hands why did you do that? You are so stupid" How do I get back to who I was before not who I am now? Is it possible? I don't know anymore.
Thanks for listening to me rambling on. I just don't really have anyone else to talk to. I need some help and all of you seem so knowledgable and so helpful. I don't know what I would do without you.

AGAIN I AM SO SORRY!

Sincerely,
Tracy the mess

Tracy,
There is no need to be sorry, or call yourself a mess.
I'll give you one bit of advice however.
It may or not work. It will probably take some time both to master, and take effect.

There's an old saying, or maybe not so old...
"Expectation is your doorway to Disappointment".

Maybe you should try lowering your expectations of your family, and husband.
The more you complain, and stay in a negative place, the more "Helpless" they feel. Do you like to be made to feel that way? Of course not. So then maybe they retaliate?

Then, of yourself, and your body..
You do your best everyday. Your doctor and body will do as will happen.
If you have Faith, use it!
And, for heaven sakes, stop talking to your hands! They can't hear you, and it's really like being Passive Aggressive, especially if anyone is in earshot, just like you're doing more complaining.

Try this:
Absolutely stop complaining to your hubby and family, that's why you have a therapist, and us. It makes them feel useless. (Think; how do you make Them Feel?)

Accept what you can't change, I don't think very many of us are going back to 'where we were' or what we once were. I've had this since 27, I'm now 53. It's only getting worse.
But, if a friend calls and asks if I want to go out, I'll just say, sorry can I have a rain check? Or, sure, be happy to!
No negativity should be shoveled onto loved ones and friends. It's just not what they're for. (Except of course on a rare occasion, or when they ask).

This may help you Tracy, or it may anger you. I don't mean to anger you, it's only a suggestion....
But, the people whom I treat this way, actually end up becoming my Advocate! They'll speak up for me, if need be.
Because they "Understand" there's nothing they can do, except that.

love,

pete