Discouraged and lost!!
 

Alright so Ive done 2 lumbar blocks, the first one had helped a little but after a few days it came back, then when I did the second one I swear it made me worse. I think it even spread to the back of my thigh... So I went to the DR today and He Kinda FLuffed me. He told me we can do Spinal Cord stimulator and honestly Im still new to RSD and I really am Afraid to even consider that now. I know theres so many other treatments out there.

I'm just in a lost right now and don't know what to do or where to go from here!! Can someone please give some advice. I am in Long island. Im starting to think maybe I should travel into Manhattan but Im just Lost. Im starting to cry and be upset with this and ask myself why me and feeling sorry for myself. So any support on this would help me. Thank you so much people. you've been great. XOXOXOXO

I am so sorry to hear that you are going through this.

I personally think that if your current doctor's only two options are blocks and SCS then you need to look into possibly seeing a new one. Especially after getting worse after the second block. Mine spread after a block and that doctor was totally useless after that...too worried about protecting his own butt and all that. I didn't feel like it was his fault that it spread and I didn't blame him for that...but I do blame him for the way he treated me afterwards.

I think you need to try to calm yourself down and assess your options. Getting a second opinion from a doctor with experience with RSD should be at the top of that list. But when you go in to see them you should be prepared to go over the treatments you have gotten so far, what works, what doesn't, what you are interested in trying, etc and then get their feedback. I'm not saying you should tell the doctor what to do, but be prepared to have a conversation and ask questions about the different things you are interested in trying and why.

I don't blame you for not wanted to do the SCS...there are a lot of other options that you should look into first before doing something so drastic and risky in my opinion. Everyone has to evaluate and choose their own course of treatment...but never choose something out of desperation.

Sometimes it helps me when I write things out. I now keep a daily journal of my life with RSD. When I was at my worst I also made sure to write out all my symptoms and take notes on any research I had done. I would make a list of all the things I wanted to go over with the doctor and then make sure to bring the list in with me to the appointments. Just going through this process really helped me organize my thoughts and approach things better...not to mention it gave me a sense of control that I desperately needed. There's so much we cannot control with RSD so it's important to focus on the things you CAN do.

Educate yourself about your options. Ask a lot of questions not just of the doctor but of us here too. There are lots of different treatments out there, many of which you might do at the same time. The key is to find what works best for YOU. I'd start with the least invasive first and work my way up from there.

Take care...I hope you feel better soon.

Sorry
 

First of all, I think we all have had the pity-pot securely fastened to our tushies from time to time. It isn't fair; you did nothing to deserve it, and it does suck. Having said that, there are ways to take some control. The stimulator worked for me for about 6 months for me. RSD is really case by case and we are all different in our needs. But what I needed the most was support. This disease can make you feel alone. I hope you have good folks around you. Meditation is also key to keep stress and pain down. As for the doctor and him wanting to do more. Follow your gut and do your research. Hope this helps.:grouphug:

So sorry you are so lost and glad that you came here. I agree with Catra but most important is to try to stay as calm as possible-NOT EASY- educate yourself and keep searching for a good DR. that is knowledgable about RSD.
Try Epsom salt warm soaks -this is for the magnesium and also very calming. You will be in my prayers tonite-Fondly-Carol

Thanks Guys I really appreciate it. I talked to Jim before from RSDSA and he helped me figure some things out too. He almost recommended someone for me So I will call tmw and make an appointment. I just became very overwhelmed with Emotions today and felt Fluffed off. I feel little better. Just hoping this burning will calm down already.

Hello my fellow islander. i know the feeling your speak of . i had three blocks done and and each one seemed to make the beast worse. in response to this my PM offered these alternatives. (amputation, pain pump, and the scs. ) I first responded no I don not feel these are the right decisions for me . so he replied then its just pain killers. not much else I have.so scared and ****** I researched more. first let me explain my decision to decline options he gave. well amputation. the limb(at the time only one) hurt like all hell but it still holds weight. it is mine and I wish to keep it, there has to be other options. ... the pain pump. well surgery and drugs and repeat. the risk of RSD spreading with surgery is significant and I don't wish to be drug dependent, (there has to be better options. and the SCS well it has helped some for a little while and even less for longer than that, the risks are great in my eyes. (of course surgery, possible RSD spread, but then there is leads moving, batteries failing, nerves being burnt , and I'm sure there was more but that wasn't for me, all are scary to me. despite how much pain I'm in. I use I be cause we are all different these were what my reasons were, and I have always had a high threshold for pain. so I see ll of the above as last case scenarios. and I do not believe my dr tried all options. so I researched and I am still seeing options that are new. i.e.. ketamine infusions, hyperbaric therapy, aqua therapy, calmare, and though I hate pills and drugs, he hasn't really played with my drugs all that much, so as I researched I took notes and presented to all my dr,s and my neurologist keeps pushing for his ideas for treatments such as in patient pain psychotherapy and PT. and my PM agreed to try aqua therapy with starts tomorrow, in with I am paying for until i can get ins to pay. all to a point. As they said before me do not decide in desperation , calm down best you can research and you decide what is best for you. after all it is your body and you are the pilot, don't let them drive they do not feel the pain, you do. You know your body better than any one else make a journal go over it with you dr,s along with your research, and make informed decisions. ones you can live with.. many soft hugs go to you , I know you're scared but you aren't as alone as you sometimes feel, you have us!!!

Now to make matters worse
 

I didnt realize this before but I thought about it.

I got terminated from my job on May 2nd. I also received a letter on may 29th stating that the IMC report says I can go back to work but cant walk stand or climb ladders so for me to check with my DR and see what my restrictions are. I dont see my DR till Tuesday. My commute is an hour and a half and it involves me Driving, Taking Train to 2 other trains that involves a lot of stairs and walking. nevermind the job of me walking around to printers and dealing with other floors of companies.

Plus Im still in a lot of pain and need to find other DR's. They arent going to be ok with me taking all these days off to see DR's. HELP!!! what do I do??? I contacted Lawyer just now (its 12am so obviously no one there) im just stressing out.

One of the most overwhelming factors is coming to terms with how disabling RSD really is. Having a psych doc can make this adjustment a little easier.

If you haven't had a good response to blocks, research block techniques. Do you feel you received the best care available? Did you receive the best meds available during the block? If yes to both, then it might not be the right course of treatment for you.

Regarding your commute, is it safe and/or realistic that you can drive or even deal with public transportation at this point? Could you make a temporary relocation, even staying in a motel, to determine the impact?

Before your appointment on Tuesday with your doctor to discuss restrictions, really take time to sit down and realistically assess what you would need in terms of restrictions and accommodations. Try not to get emotional about it, just write down what you can't do, what you can do, what you can only do for limited amounts of time, etc. Leave no stone unturned as you go through all these things. Think about every aspect of your job. Think about the commute. As LitLove said...can you SAFELY drive and/or navigate public transportation?

Now after this...you need to think about what things could make this all easier for you. I could not guarantee that these things would be provided to you but if you and your doctor don't ask then you will never know. Some things I have seen provided to employees by work comp (if requested by the doctor) are: car service to/from work, electric scooter/wheelchair, hands free typing software, doing some work from home, etc. So really think about what your restrictions are and if there are any accommodations that could offset those restrictions to make it possible for you to perform your primary job functions.

Have all this written down when you see the doctor and discuss it with him. It usually helps to have a job descriptions with you when you go over this with your doctor so they have a good understanding of what is required from you at work. Work notes tend to need to be very specific...some businesses actually have specific capacity forms they want workers to fill out. Make sure you read the work note/restrictions before you leave the office and check to make sure it has everything you think you need. If it doesn't, get that doctor back in the room and rewrite it. If the doctor doesn't agree with something you think you need in there then take the time to explain to the doctor WHY you need that particular restriction/accommodation. As someone else said...the doctor doesn't FEEL you pain and doesn't live in your body...YOU do. Try to arrange all your thoughts before the visit and stay as calm as possible about it. And again...have it all written down and have that piece of paper with you in the room so you don't forget anything.

I'm sure an attorney will be able to give you more advice based on your specific state laws and requirements...so it is important that you go over everything with them. They usually have experience dealing with different companies and work comp insurance companies so they can give you a good idea of what to expect. Hopefully they can handle the communications with work comp and at least take those worries off your shoulders so YOU can focus on your health and the medical stuff.

Im still having real difficulty driving. Im lucky I can drive to PT which is 5 mins away. Everything after that is Hell. And to Drive into the city from me would be terrible. Would take me an hr or 2 to get into the city due to traffic etc, then I would have to find parking because I know there isn't a near parking by the job also.

I know in the past that when I had surgeries I have relapsed and very concern to relaspe. But the problem also is Im not even feeling ok as is. Me sitting for hRs drives me Nuts. For me to even sit at my job for 8 hrs would be terrible.

I can definitely relate to the sitting driving you nuts. I definitely went through that last year when I couldn't stand or walk at all. I couldn't drive...I felt trapped. Just be honest with your doctor about everything. Even if the IME doc says you can work, that doesn't mean your treating doctor will. This is where a good lawyer will be important.

Also...have you considered (or do you have) a handicap parking placard? It might be a good idea. I waited a long time before getting one because I was so worried that I would be taking a handicap parking place from someone who REALLY needed it...but then I realized that I REALLY needed it. I figure that if I am having a better day or reach the point where I don't need then I just won't use it. Doesn't really help with the DRIVING itself but it can make parking less of a hassle...and every little bit helps. I don't know what the laws are in your state but I know in Illinois you don't have to worry about meters or time limits on parking spaces if you have the placard. It would be worth looking into if you don't already have one.

Unfortunately, I am very sensitive to noise and vibration. I had to wait outside the other day while at my doc's office because they were running the copying machine AND even worse, a fellow patient was playing some very loud, very jarring game, on her cell phone. Outside, the wind did not make my arm any happier, so I sat in my car that was luckily right in front of the office. There was a time, when I was level 8-10 pain all day, every day, that that would have sent me into a massive flare. Tears would likely have been involved. ;)
The environment had started elevating me from a level 3, to the 5-6 range. Anywhere in public, including almost all offices, just have a level of noise and vibration that is intolerable for me to be in.

MANY of those with RSD are so severely disabled that work is not an option.
If driving one day for five minutes sets you off, what happens the next day? Are you having to recover from the day before? Those who are healthy have made the claim to me on occassion that they would work regardless of their health. That's because we'd all LIKE to believe we have that control over our health.

And there ARE RSD patients who do learn to adapt and work. BUT, getting you safely and comfortably to work is step one. You MUST discuss this with your doc. It exacerbates my pain to drive, but also to be driven. If you're the same, it might be unrealistic to return to work. It took me YEARS to accept that I wasn't going to go into remission and return to work, or even figure out some way to adapt to a new career. I delayed my SSDI approval because I wanted to work so much, that I just wasn't honest with myself.

Maybe, you need to try getting up and leaving the house for 8 hours a few days in a row to see how your body responds. Go to the library or a Starbucks and just sit and read. Note what the drive does each day, if your fare worse on day 2, and then day 3, etc. Or go try and sit through a few movies at the theatre, or walk through the park, but it needs to include getting up at your regular work hour and a commute...

Good luck!

Once again thanks guys I appreciate it.

I actually just asked the pain mgmt dr for handicap sticker. He signed for 3 months I went to DMV the other day to find out that they dont give them that I had to mail in, so I mailed it yesterday. Hopefully I get soon.

Im trying to move around more, sometimes my days are bad that I just want to sit but Ive been trying to give incentive to myself. Right now I am focusing on a fundraiser I am doing by my house for RSD. So thats been moving me forwards. just been really hard the last few weeks. Sometimes when I walk I feel alittle better but then i get other pain (not rsd) in foot so I have to sit.

So we see. I called 2 Dr's today to make appointment. The first one didnt take workers comp and the second one needs to verify before making an appointment, they never called back so I return the call tmw and if not I'll call this other dr that I got recommended too. So one day at a time right?

That's right...take each day as it comes...but also have a plan in place for the future. Plans may change but I find that they help me to keep the focus and I have to be flexible and realize that many times the mind is willing but the body is not.

With any kind of activity I think it's important to remember to work on an equal amount of rest and activity. Even when I was doing my physical therapy every day throughout the day I made sure to rest in between. My progress was better and I avoided (as much as possible) overdoing things and setting myself back. I started with 10-15 minutes of activity with at least half and hour of rest (sometimes more). As my stamina and endurace improved I gradually worked my way up to longer periods of activity and short periods of needed rest. This also helps to avoid the other aches and pains you can get in your body due to your reduced activity. As you slowly work you way up in activity levels your body can slowly adjust to the longer periods on your feet and stuff.

Remember that if you need to sit down and rest for a little while that this is okay. What you don't want to do is allow yourself to get into a cycle where you are not moving at all...that's the real danger. Better to spread out that activity throughout the day with rest periods than to do a 2 hour marathon of activity in one shot and then be down for the rest of the day or even multiple days. Test your limits and know what you can handle. Set that baseline and then work on improving over time, setting goals for yourself.

That was the best part of my physical therapy. I had a wonderful therapist who came to the house and she did an amazing job helping me set and reach goals...gradually increasing the difficulty of the exercises so that I kept moving forward but never overdid it and experienced a setback. When I went to the outpatient physical therapy several years ago I think the experience was not as good because they tried to force too much too fast without the gradual progression. The focus with the at home therapy was on the gradual progression and on the exercises I was doing not just IN therapy but also outside of it.

Dear Breaker
 

I really cannot add to the great responces you received. Be your own best advocate, as you know your body, better than anyone else. Do all the homework like has been suggested to you. The education is your friend, and the best way to reach your doctors for help. Don't give up, or be pushed into a therapy you do not want. There will always be people on NT to be there for you as you go through this pain. You are not alone, and I care too. I live with a different kind of pain, and I do have compassion for what you are experiencing. I will keep you in my thoughts and prayers. ginnie

so as I understand it. you are really afraid that you cannot return to work with all your restrictions, if so you are probably right. you do know your body best. workers comp atty,s usually deal with disability as well. mine are in bayshore bohemia area. if you want ...shoot me a private mssge . as far as transportation to dr,s appt.'s pt procedures. if you cannot drive to them (if this is comp) they must provide transportation. and if you can drive you must keep a record of mileage for reimbursement . in NEWYORK worker comp. is responsible for your transportation to and from medical appts. (up to reasonable extents). Do not concern your self with (what will people think) it does not really matter. each person has different limits. you could very well be past yours as I exceeded mine when they pulled me from work. you have a real pain with real concerns. safety for your self and for others, amount of pain you put yourself through amount of stress you can go through. these all differ between people, healthy as well. and having RSD is not healthy or well.

Ketamine infusions have changed my life. Dr. Hertz offers ketamine in Manhattan at St.Luke's Rooosevelt and accepts most insurances. Check out the Ketamine Klub on FB for more info. Good Luck!!