Hey all. I've been gone. Feeling really really under the weather- RSD pain high, nausea/ vomiting/ passing out from the pain, and migraine headaches back again.

Firstly, a lot of people mentioned "seizure" to me when I say that I am passing out. My Dr doesn't think that is what is happening.

I really haven't talked about my dr situation much here, I had a dr who treated me with medications and physical therapy (and she tried to pull the "see the psychologist" thing on me, but I stood firm in what I believed was best for me...
My dr wouldn't do nerve blocks or injections, because "your pain is too widespread". Why can't I just get one area done?!

Finally!! Found a NEW pain management dr! He is great. He is nice, doesn't think I am psychological, and doesn't believe I should do MORE hours and hours of physical therapy that isn't helping and making me worse and worse. Well, when my physical therapist said "enough" I stopped PT after 5 long months with 3-5 hours each day, my world crashed around me, so to speak. I guess I believed that the PT was going to "cure" me and one day I would walk out of there healed and get to go back to "normal" life.
I wasn't better- I was so much worse than when I started (except for more movement and less sensitivity in my arms/ shoulders). I was so dissapointed

New PM Dr wondered *why* I hadn't had any blocks or injections. He let me! And today I had my first LSB. Only worked for two hours (dissapointing, but I will try again the week after next), but it means that it kind of "rules in" the RSD, as it will usually respond to blocks. New PM Dr is sending me to a neurologist (for migraines/ passing out), and a rhuematologist (to rule out other stuff).

It *appears* that I might have something other than RSD AS WELL. I do have many symptoms of MS, and a few others, but MS stands out the most. Who knows, but Dr never tested me for things other than Lymes, Lupus and Arthritis, and gave me one bonescan. Never sent me to a rheuematologist to rule out more. More should have been looked into as I have all the following symptoms: ringing in the ears, loss of hearing, numbness, PAIN (stabbing, shooting, burning, throbbing), migraine headaches, skin temperature changes, skin color changes, allodynia, hyperalgesia, loss of motion, severe muscle spasms (that lock my jaw, and do numerous other things)/ contractions (that "lock" up my limbs, usually on the left side), swelling, abnormal sweating, tingling, difficulty swallowing, heart palpitations, weakness (enough that I can no longer walk unassisted, and have to use a walker), passing out, double vision, burning mouth (which some might call BMS, but it is the RSD in my mouth/ throat), shortness of breath (and at times I stop breathing out of nowhere repeatedly)... too many! -and all pretty scary, and when put together I= a mess! LOL! I have to try and make light of the situation as it is pretty overwhelming! Trying to explain to people what is wrong with me and I am so young is hard.

The lyrica has proven to be an excellent option for me together with neurontin. I have less allodynia when taking 450 mg per day.

I have quite a few questions since I have last visited:

*If you've had blocks, if the first one wore off in the first few hours, did the next ones wear off sooner, or no difference or did they last longer?

*Those of you with RSD in the mouth/ throat: what has helped with that? I have found cold ice water helps, but not sure about using that with the ice/ RSD issue?!

*Does anyone else BESIDES me and Frogga pass out from the pain?

*At what dose of valium has your muscle spasms lessened/ stopped?

*What is the highest dose of amitriptyline you've been on that has helped for sleep?

*How many of you have been approved as "handicapped" and gotten a handicap tag for your vehicle? How did you go about it? (trying to figure that out)

*Who has in home heath aides to help them? How were you approved as "needing" that?

*Any good positions in bed you've found helpful, if you have full body RSD?

*Trying to figure this out: which ones of us on here have full body RSD? (trying to get a count)

I am pretty overwhelmed with everything now, and if you don't see me around much don't be suprised. I am VERY exhausted, and everything is getting worse, and I have no energy to type, and my hands are hurting terribly from the RSD. The RSD is nearly full body at this point. I am trying to fight hard but it gets so frustrating day after day. Being young and house bound isn't easy. I am able to get out once in a while to ride a motorized cart in a grocery store, but I can't walk through a store. I am repeatedly falling. Frustrating, as I said, but I am not giving up. I am seeing the neurologist in July and he has more to offer than the PM Dr, so if blocks fail the neuro can do trigger point injections. There are other medications that I haven't tried, and I WILL GET THROUGH IT!

Some of you on here have blessed my life tremendously! Thank you tons everyone, you are so appreciated. I appreciate your prayers, best wishes and sweet posts to me.

With help of my sweet positive and determined to make it through everything Frogga, I am helped millions. ((hugs)) And by others here as well who I have talked to privately (you know who you are and know I love you! ).

I'm glad to hear your new doctor is testing and doing a complete evaluation of your conditions? A big step in a good direction.

A voice recognition software program will save a lot of typing- many from the TOS forum got theirs from Ebay- and a good microphone or headset.

[*How many of you have been approved as "handicapped" and gotten a handicap tag for your vehicle? How did you go about it? (trying to figure that out)


for Oregon-
[Disabled Person Parking Permit
Special parking privileges are available for individuals with disabilities. Those who are certified by an authorized health care specialist as having a permanent or temporary disability are eligible for a Disabled Person Parking Permit.

* Types of Permits
* Who Qualifies
* How to Apply
* How to Replace
* Disabled License Plates

Note: There are two different styles of disabled parking permits currently in use. One style is a light blue and the other is a dark blue - both have valid disabled parking privileges.]
http://www.oregon.gov/ODOT/DMV/drive...sparking.shtml

I forgot to check for your state - but check it's website - Motor Vehicles section - or just search "disabled parking permit" and it should find it for you.

Oh I found an even better thing- a pdf file form & instructions{oregon}
http://www.odot.state.or.us/forms/dmv/265.pdf

*Who has in home heath aides to help them? How were you approved as "needing" that?]
This info might be in your state website too- plus your doctor should be of help with this also.
Insurance Type may come in to play also- Pvt medical ins or Medicaid/medicare??

Hey IHH,

So, maybe I lied about being tired when I wrote to you earlier! I covered some of this in that letter. But here goes nothing.

*If you've had blocks, if the first one wore off in the first few hours, did the next ones wear off sooner, or no difference or did they last longer?

My first ones were also with lidocaine, which (as I already said) is ridiculous. In my opinion, blocks should always be done with bupivicaine (Marcaine), as it lasts MUCH longer. After my first two, when I was with a very nice but not particularly experienced PM doc, my blocks were done with bupivicaine and lasted much longer because of it (bupivicaine lasts about 6-8 hours, lidocaine about 2-3 hours).

*Those of you with RSD in the mouth/ throat: what has helped with that? I have found cold ice water helps, but not sure about using that with the ice/ RSD issue?!

I've never had that problem, and I'm very sorry that you do! I wish I had some advice.

*Does anyone else BESIDES me and Frogga pass out from the pain?

I never did. Again, I'm sorry you've had to experience this.

*At what dose of valium has your muscle spasms lessened/ stopped?

I never took valium, except a few times before blocks (that first doc was also inexperienced in sedating people for blocks, it seems). I took other muscle relaxants. From what I know, both from reading stuff and from my docs, the best ones for RSD are Zanaflex and Baclofen. I took Zanaflex, but my muscle spasms never really stopped. I guess they lessened a bit, but with my RSD-induced dystonia, it wasn't really good enough. The muscle spasms have been with me the whole time, even when the rest of my pain was almost gone.

*What is the highest dose of amitriptyline you've been on that has helped for sleep?

Well, here's a funny story...apparently, a rare side effect of amitryptiline is urinary retention. Amitryptiline gave me my 18th birthday present---the chance to sign my own forms in the emergency room. Basically, I never got to find out if it would work for me. Apparently, peeing is one of those necessities of life. So my doc switched me to nortriptyline (Pamelor), which went great until I had a seizure from it. Great stuff...those are two of many stories that begin, "so this one time, my doc tried to kill me..."

*How many of you have been approved as "handicapped" and gotten a handicap tag for your vehicle? How did you go about it? (trying to figure that out)

You get a form from the DMV, and your doc signs it (at least that's how it works in Wisconsin). I had one, it was really simple to get.

*Who has in home heath aides to help them? How were you approved as "needing" that?

I had a home health aid who visited every other day when I had my TECs, but that's it. She was awesome. I have good stories about her as well.

*Any good positions in bed you've found helpful, if you have full body RSD?

Nope, sorry. I'm lucky, and I get to just leave my leg off the bed if I want.

*Trying to figure this out: which ones of us on here have full body RSD? (trying to get a count)

Count me out on that one...hopefully forever.

End of survey responses. Hoping to hear from you later. Wishing you lots of pain-free time!

-Betsy

Hey Vanessa. I'm still sorry to hear how hard of a time you are having with your rsd But I'm glad the new pm is a lot better than your old one.



With the handicapt thing. What you have to do is have one of your doctors write a script allowing you to have a handicapt thing. Then go to the dmv place I believe or some place that deals with that stuff and give them the script. It also helps to have a few articles on rsd so they know that isn't curable. We forgot and my mom had to explain over and over what was wrong. After all that, you should get a handicapt tag.

I believe my rsd is beginning to spread into my mouth/throat also. It isn't bad yet, but I can feel it starting. And I am starting to feel really thirsty all the time. What I find that helps me is to drink cool drinks, but not with ice. Caffeine kinda irritates my throat so I try to stay away from that. Really thin drinks (like water) kinda hurt sometimes because they go down so fast so I drink lemonade, gatorade (a lot), and stuff like that. And what I also found that helps is cough drops. Not the strong ones, but they simple $2 bag of the cherry flavored ones. They help out a lot for me.


I hope you get better soon. I'm thinking about you.

Hugs

Nikki

Hi Vanessa, What a girl, and only 17. When I needed a handicapped tag, I didn't wait for the dr. to OK it. I took the paper to him and said please sigh this , I had all I could filled out,. I didn't give him much time to think. I've been doing this so long, I don't put up with much. I'm always very kind and very strong. I will pray for you, and good luck honey.

Hi Vanessa! I just want to say that you are in my prayers. I too am sorry to hear that your going through such a tuff time! hang in there sweet one, we are here for you. God Blless you, Vanessa. Love, Desi

Hi Vanessa, I'm sorry you are going through so much. I can't believe the PT'S put you through so much torture.I have been to 4 different therapists. They all just worked on me for a month and when I showed no improvement they discontinued the treatment. The whole time I was having therapy my rsd was spreading so it was obvious the treatment wasn't working. They should have seen you were not getting any better. Never be afraid to speak up and end any treatment that you feel is not in your best interests. I was a RN for over 20 years and am amazed at how afraid people are to speak up to their medical team. Please don't be afraid. This is your body and you have every right as a patient to refuse any treatment you are not comfortable with!
For your question on nerve blocks. Where I go they do a trial of 3 nerve blocks. If they are not successful or only minimally successful they do not continue past 3. If they are successful they will suggest more. The first 1 that I had gave me 20 hours relief from the cold and the mottled color but minimal relief from pain. The next one only gave me 7 hours of minimal relief from all rsd symptoms. For the third, they wanted to do a chemical sympathectomy. I said, No. That was the end of the blocks for me. Every one has a different experience so you have to decide what is best for you.I was 9 months into my rsd with spread already occuring so perhaps that is why they didn't work for me. The PM doc I currently go to feels that for any rsd treatment to be effective it has to be done within weeks of symptom onset {like anyone is diagnosed that early!!!}
As far as your question on the handicapped tag for your car...that's an easy fix. I went on line to the local DMV and sent for the form . When it came in the mail I brought it to my Dr. She signed it..I mailed it...In a week I had my tag. That's the easy part. Now.....finding a handicapped parking place...that's like finding the proverbial needle in the haystack.I think we could start a whole new thread just on that subject. Anyway, I hope this helps you out a little. Please let me know how you make out with the blocks.Take care,Jeannie

I resisted the shrinks before I started having problems but they've been fairly helpful and non-accusatory. For the first several years the main problem was pain. Oh sure, there were a host of other afflictions which came and went with the pain. But I believed if I could get a handle on the pain then I'd be OK. I guess I still believe this.

My problem with passing out is at night. There is various GI pain when the problem flares up and I pass out. Usually at about pain level 8. Recently I've found laying on my stomach and covering my arm and shoulder can make it pass. I also need a hyocyamine (for spasms).

Thanks, Jo! You are always a big help!

I am so happy my new dr is looking into further conditions, too!

I am thinking that I really want to get that voice recognition software soon, too. Thanks for mentioning it.

I will look up my state website and somehow figure out how to apply for medicaid and then the DMV.


Betsy- thanks for the responses! I have learned a lot from our email conversation on blocks. I appreciate that.

Nikki- the cough drops sound like a good idea! I will try them... though hopefully the scent of them won't make my migraines any worse

Rashelle and Desi- thanks for the kind and caring responses! Yes, only nearly 17... and things keep on getting worse... but I know I am going to make it through it all!

Jeannie- thanks for your long response with your experience and help. You are appreciated! The reason the PTs continued on with the PT is because my old PM Dr believed that this was the way to go, and that I could recover that way. That is the only reason I continued on and on and on with the horrible PT. Because I thought what my Dr said was true. I have come to learn that what your Dr says isn't always true, and you have to decide some things for yourself. My physical therapist realized that the Dr's way wasn't working, and that is when he saw that I was just getting worse and he had to discontinue my PT. My therapist was the most caring guy I could ever meet. He told me time and again that he did what he did because the Dr was telling him that I would get better that way. He saw that it wasn't working wonders, so he started PT lighter with me, and gave me more rest... and then he saw that for me to do PT I needed to do a home program so I could exercise and rest, exercise and rest, and so on, and not HOURS straight of rigorous PT. He cared about me and he decided no matter what my Dr said that he had to give me a better quality of life through ending the PT as an outpatient, give me days at home (and not 4-5 days in a clinic!), and let me get more school and normal things done. He ended it for my sake. He wasn't doing it for the money, he genuinely cared!! It has been better for me emotionally to not be in a PT clinic 4-5 days a week for 4-5 hours some days, and crying for hours while doing this PT... it was too much on me, and emotionally, things have improved through switching to a home program.

Imahotep- what I resist is a psychologist telling me that I have problems that CAUSED my RSD. I am not against pain coping techniques. What I am against is the psychologists from specialty children's hospitals saying that children with RSD have psychological problems CAUSING their RSD. I cannot tell you how glad I am to be out of the PM Dr I had previously. It was ridiculous, and any psychologist from her hospital or any other specialty children's hospital was going to psychoanalyze me and tell me what my "problems" were that caused my RSD. That is ridiculous and I am in charge of my health and will make the decision about seeing a psychologist, not my dr! I don't believe for one second that I had psychological problems that CAUSED my RSD! I had an injury. A small one to be sure, but I had an injury that started this all!

And most of the psychologists probably are non accusatory, but not the ones from this hospital I went to! Like I said, my friend went there and was told her jealousy CAUSED her RSD. Yeah, like a psychological problem gave me ALL these symptoms?!

I pass out more towards the end of the day, too. I tend to get my worst pain at night too- so that is why I pass out more then. It gets pretty scary, especially when I went unconscious!

Thanks again for the answers, thoughts and prayers everyone!