[Dew58]

Well, again I was told by my PM doc that I will never be cured of RSD/CRPSI. I KNOW!!!

PM Doc also told me that blocks would not help me..would probably harm me at my stage of the disease.He stated, WC made you wait too long to have remission as a possibility. (too far gone)

Wheel Chair: I have to have lawyer deal with this issue. Doc wants me to stay as mobile as possible. Doc said the electric chairs can not be scripted for my condition,as in my current disease status. ( not far enough gone)

Also,PM doc added a new med in my already bountiful cocktail glass:

OPANA ER 10 mg. tablets taken twice a day..along with my other meds!
In Morphine family. I will see him again in 4 weeks, at which time he will bump up the mg. on the OPANA ER ( Oxymorphone;Time released).

Also, all my other meds will be scripted for 3 months and I will most likely be MMI. My maintenance schedule is to see him every 3 months..indefinitely.

I feel nausea and drowsy at the moment...at the same time

Are/Have any of you taking/taken Opana ER? If yes..what is your opinion on this pain med?


Talk to you all later.
Dew

[Jennelle]

Why does injections just have to be for a cure, if it works for pain management go for it! I liked them until it stopped working. I am on the morphine ER and it works but sometimes I need more. As for the worker's comp wish they could all just kiss our butts! They definitely give me more anxiety that makes me worse. I took some great advice (thanks by the way) and am getting an atty.
Hope all turns out well for you with the chair. Quality of life is also important not just moving all the time!!!!
Jennelle

Originally Posted by Dew58

Well, again I was told by my PM doc that I will never be cured of RSD/CRPSI. I KNOW!!!

PM Doc also told me that blocks would not help me..would probably harm me at my stage of the disease.He stated, WC made you wait too long to have remission as a possibility. (too far gone)

Wheel Chair: I have to have lawyer deal with this issue. Doc wants me to stay as mobile as possible. Doc said the electric chairs can not be scripted for my condition,as in my current disease status. ( not far enough gone)

Also,PM doc added a new med in my already bountiful cocktail glass:

OPANA ER 10 mg. tablets taken twice a day..along with my other meds!
In Morphine family. I will see him again in 4 weeks, at which time he will bump up the mg. on the OPANA ER ( Oxymorphone;Time released).

Also, all my other meds will be scripted for 3 months and I will most likely be MMI. My maintenance schedule is to see him every 3 months..indefinitely.

I feel nausea and drowsy at the moment...at the same time

Are/Have any of you taking/taken Opana ER? If yes..what is your opinion on this pain med?


Talk to you all later.
Dew

[loretta]

Hi Dew, Sorry you are in so much pain. I am glad you have an attorney. I found a quotation from the Cleveland Clinic by an RSD specialist that if RSD isn't treated in the first 3 months, there is little or no chance of remission. I just read it a couple of days ago. , just go to Cleveland Clinic thru goggle and go under rsd. Maybe your attorney may want to see the comment. My memory is so bad, it seems I've already told you this.
Anyway, I take Vicodin 2 at a time 3 times a day. Lorazepam 2 mg. 3 times a day. Ambien CR, which doesn't work. Haven't taken the Opana ER. I'm trying to stay with Vicodin, when my Dr.moves next year, I'll go to a Neurologist at the Scottsdale Pain Center. Will probably go and meet him before my Dr. moves, make sure I like him. Met someone at the annual conference that was at the Scottsdale Hospital that goes to him and likes him, forget his name. I probably met him, I was in that hospital 4 days about 5 years ago, passed out from low blood pressure. almost didn't wake up. I've had this 13 years, a person has no idea the expense of this disorder. Before, I found out I had RSD I fell at Exxon gas station putting air in my tire. The hose malfunctioned and jerked back violently and threw me to the ground and landed on my skull. I reported it and they gave me a medical number. The next day, the AirHose machine was gone-replaced by a brand new one. A disc in my neck ruptured, shown on an MRI that I paid for. Didn't turn it in to my insurance, because intended to turn it in to Exxon. Now I have a lot of pain in my neck and the 2 yr statue of limitations has run out. I regret not sueing them, Didn't know I had RSD at the time. I had a 4 year wait of diagnosis. Something I use to help, is the blow up little neck pillows people buy at a luggage shop for long flights. I put it in a pillowcase and it helps with the softness on the neck.
Take care, loretta

[CRPSbe]

Originally Posted by Dew58

Wheel Chair: I have to have lawyer deal with this issue. Doc wants me to stay as mobile as possible. Doc said the electric chairs can not be scripted for my condition,as in my current disease status. ( not far enough gone)

So then... let him answer this question for you. What are you supposed to do if you can no longer drive and you have to cover long distances, like a couple of miles, for instance to visit friends who live a few blocks away, to go to the library, to do some shopping. How are you going to do that? Are you going to grow wings and fly places? Reality check, please!

Don't they get it? It's not about "not staying mobile" at all. The scooter or chair enhances your mobility range. I stay mobile too, to the best of my (RSD) ability, and unfortunately that's only short distances and it's not improving, and I'm sorry but you and your RSD are stuck in daily life and that daily life needs to be lived and has tasks (that means going places) and with the RSD that is not made easy at all.

Would there be the same discussion if it were "just" about using a car? Do they say cars are about "not staying mobile"? Of course they don't. The car is a tool for covering greater distances. I think of my scooter that way. It contributes to my overall mobility. It functions as a bike, most of the time, and I use it to get around town (I live on the outskirts of town).

Can't answer the meds question, am taking other meds (buprenorphine).

[lostmary]

Yeah, another Opana er buddy. Actually I started on the 10mg 2x a day, and stayed on that for 3 wks. I'm up to 20mg 2x a day now. It is very strong, and for the first 4 days or so of starting Opana I slept almost 15-18 hrs a day. I couldn't do anything. I was almost comatose and then it was much better. The same thing when he increased it, but then I only slept for a couple of days. I'm really happy taking it. I've been on it almost 2 months, and I can now see so much of a difference in my pain. If you want to pm me I'll send you to another site that talks about opana er. According to the site, Opana er is 7 times stronger then morphine. Pm me. I'm going to be upped again in about a week, and I'm looking forward to it. Right now I'm feeling better then I have in years and years, including the time with the scs. I don't drive because of the meds, but I have put in a small garden of veg and herbs, I'm starting a compost pile, and this is all stuff that I couldn't do before this med. I had one flair while taking the 10mg and i almost went to the er. I was i going to see my dr. anyway in 2 days so I hung in there. that's when he upped it. so far so good.

Mary

Ps. aside from Lyrica (which I don't like) I'm only on cymbalta and no other pain meds. It's nice

[daniella]

I hope you get some relief from these new meds. As for the scooter type I know my gramps grts around so well with his. Is there a way you could fight or appeal this? This could really aid in quality of life. Sometimes if the doctor will look outside the box a little the dx can be so that you can get items like this that would be a benefit. Stupid rules that make no sense make me so mad. On a side not there may not be a cure but there is possiblity for a better more stable life. Hopefully you can find what works for you to achieve that.Many better thoughts

[CRPSbe]

I'll show you what scooter I have now. Mine's broken, however. I've applied for the same model because it's got lots of legroom (something that most of these don't have):

The information is in Dutch, it's a 15km/hour scooter.
http://www.vanosmedical.nl/nl/scoote...navigator3.htm

Here's another image:
http://handynet-oesterreich.bmask.gv...7590n00003.jpg

[Dew58]

That is a fancy scooter,for sure. I am confident that WC will be paying for a scooter and other items I need..it is just a matter of time.

I slept at least 8 hrs in a row last night..this is incredible..as I haven't slept more than 3-4 hrs in a row since 2007!

The Opana ER is helping me immediately. I am so excited For the 1st time in a long while, I wanted to DO SOMETHING ...out of my house today. I had hubby drive me to the salon and I had my hair and nails done! I feel so "pretty"..and it has been a long while since I felt like this.

Amazing how 8 hrs of continuous sleep makes one feel energetic. I have low pain levels today, and it rained and stormed last night and all day today.

We are getting ready for the AZ trip to be with my sister who is having pancreatic cancer surgery.( we leave this Friday)

I appreciate each and everyone of you that posted to this blog.

Thanks,
Dew

[CRPSbe]

Originally Posted by Dew58

I slept at least 8 hrs in a row last night..this is incredible..as I haven't slept more than 3-4 hrs in a row since 2007!

Good for you! Yay! I had a great night 2 nights ago, in that I woke up but could go right back to sleep. It was *very* refreshing, and I know what you mean. I felt much more alive.

Originally Posted by Dew58

We are getting ready for the AZ trip to be with my sister who is having pancreatic cancer surgery.( we leave this Friday)

Good luck tomorrow!!!

[ali12]

Hi Dew,

I'm SO very glad to hear that the new medications are helping you and that you are getting some much-needed relief from them! I really hope that they continue to help you!

I agree with what the others have said about the wheelchair and I really hope that your insurance company will cover it for you. At first, I absolutely hated using my wheelchair but then I realised that I HAD to use it in order to try and get out a bit more. I still hate using it but it has allowed me to get around more. I am just really careful to try and keep as mobile as possible while I am in the house and always keep walking if I can.

It really annoys me when doctors say that there is no chance of you going into remission with RSD!! There is always a chance and you must never, ever give up hope (even though it is extremely hard at times!)!! There is no cure for RSD at the moment but that doesn't mean that they wont be one in a few years!!! I have had doctors tell me also that I will never go into remission and it is really upsetting and gets me down a lot.

Take care and know that I am thinking about you and your family as you travel to see your sister. You are in my prayers!