It's been awhile since I've posted anything. I had a Sympathetic Lumbar Spinal Block that lasted about 6 hours only, which was slightly devistating to me. My doc referred me to another pain management doc, who examined me, looked at her nurse and said" If you want to see a classic case of CRPS II look here" She then ordered a trial for a SCS. The friday before the procedure, she called and said due to the rapid spread of my crps, she is very reluctant to try it at this time. Within 2 months my crps has spread from my left foot to my hip. She referred me to a physical therapist and psycologist.

I have had two appointments with the psychologist. These appts have left me feeling even more depressed. The first visit he asked my pain level, I told him it was about a 35 and has been that way since Jan. He told me that I was not credible as this was not a correct way of saying I was in pain. No one would have that amount of pain since Jan with out relief, and 30 was not an acceptable way of gaging pain. I told him that with crps it is common to use the McKee pain scale instead of the other one used for regular pain patients. He asked me if I thought I was in more pain than others. I said yes and he chastised me for saying so. He told me that I have no knowledge of what kind of pain someone else suffers. This past Tuesday he asked what my plans where for Thanksgiving. I said I didn't have any, my mother whom lives with me will be dog sitting for her brother and my daughter will be spending it with her father. He asked me how I felt about it. I told him that I really didn't care as holiday's are just another day. I have grown up with my mother working 11-7 and I worked as a chef/Food and Beverage Director. He asked me if I could call on friends to spend the day with me. I told him that I hadn't and probably wouldn't because they have their own families to spend the day with. He told me that I was using my crps as an excuse not to have friends or family with me on a holiday. I was using my crps as an excuse not to live life. I told him that when I try and do normal things, I end up in more pain than I started with or I get nauseated. And again he chastized me.

I left feeling more depressed than I went in. I don't understand how he could possibly understand the pain, the feelings that I am dealing with. I don't even want to tell him the despair I am feeling at loosing my career, my mobility, my hobbies, friends, you name it, whatever comes with this disgusting monster that we deal with. He told me to find other hobbies to occupy my time.How do I explain that I am lost not knowing what is going to come next...full body, mirror, etc. Monday is first day of hunting season and I am going to miss it because I am not walking and can't bear sitting in cooler weather. That was my relaxation, just to get out in the wilderness and hear the silence. Now what do I do?

I'm sorry for venting, but apparently the one that I am paying to vent to has no clue as to what I am dealing with. Has anyone else dealt with this? Any help would be appreciated.

Thanks
Susan

Hi,
I SO understand what you are saying. I have wasted so much time and money on therapists that seemed to diagnose me based upon current "theory" and their interests. I tried whatever psych meds they wanted me to try. They did not work, and generally made me worse. Then, I got diagnosed with RSD. My experience with psychologists and psychiatrists has been a waste. My agitation is from too much adrenaline output-it's been measured. It's biological, and correlates with other symptoms during flares.

I doubt this is as rare as they say, as from the forums, we can see how unaware medical people are, and how much we are being under reported and not appropriately treated. My opinion is that that the doc should be sent some medical literature about the symptoms of RSD & how devastating to normal functioning RSD is.

For myself, I think I went because I was hoping to understand better. Once I got on these forums and read enough medical papers, I realized that many, many others are living exactly the same issues. It was no longer important to me to seek an "uneducated" (re: RSD) opinion in hopes of finding something that was "missed" or really new to try. I know what I need to know now & get more out of my local support group and the forums.
Corinne

Hi Corinne and welcome to neurotalk. You will receive so much encouragement and support here. So many warm, kind friends here. I agree with you on getting someone educated and a skilled therapist.
One thing that really helped me, especially in the beginning, was journaling. It helps go thru the grieving process-all the losses. I enjoy music, reading, meditation, visualization, prayer, & keeping in touch with friends, thru phone and cards. Swimming is one of the best things, temp needs to be 86 degrees min. When my toes started curling up off the floor, my dr. had me exercising in the pool every day. and in 4 months the toes touched the ground again. yeah
I've just started a home based business. Something I can do with the computer and printer and the good days when I can get out and drive. I'm going to try the HBOT treatment next spring. My Dr. build two new clinics, each with HBOT in them. When I went full body about 9 years ago, I started seeing a psychiatrist, who also is a neurologist and pharmacologist. He has helped me a lot.
Ada, take care and let me know how you are doing. Your friend, loretta with soft hugs

I am sorry for your dismay.. we all understand your pain and loss here..our lives are in a downward spiral which we never could imagine that happening!! Us RSD'ers hear you loud and clear... It is hard for us to let go of our careers and life's pleasures as we know them...esp. when it is not our idea and having to surrender them to use a horribly painful affliction as RSD... hang in there.. try to replace your favorite things with other more solmen things.. things that bring you pleasure such as reading or simplier lifes pleasures..I know how do your replace the hunting/outdoors??? You'll find something..even if it is going out in the woods and sit just until your CRPS begins to really bother you. Mostly know you are not alone with us here you can vent to us and oh one more thing..find another therapist.. one you can relate better to.. you should never feel that you have to defend yourself and your feelings to anyone..esp. when it comes to our RSD illness. As I always say...keep smilin!!

I'm sorry to hear that you are having such a hard time.

I believe with the RSD we all have to get to a certain place with it where we have it under control so we can function to a certain extent.

As far as the pain. I always felt that the pain scale to 10 was a joke. I've told my Drs. at times it seems 100.

I don't remember how long you have had the RSD but it takes time to get to acceptance of it. I think it's just like a loss. We grieve, then get angry, then accept it.

Thanksgiving doesn't seem like Thanksgiving to me and my daughter because Bill died 3 days before Thanksgiving 3 years ago and was buried the day after. We do however have dinner. Her husband did all of the cooking and we just had to eat but we were there with all of the family. We have traditions that we try to keep for the kids in our family. It's hard to do it but it comes down to trying to put others first.

It's took me 22 years to get to where I am today. I say I am in remission but I do have the pelvic pain and it's acting up again. I was also in a car accident last week and got my right side going. It still hasn't calmed down.

Councelling can be brutal. I think they try to get us to realize that we are better off then people with cancer. I see my friend in a wheelchair and almost gone from MS and I know I am better off then she is. I do think however that the Councellors donot have a right to make a person feel that way. I have been in councelling for over 10 years and I love my Councellor who is also my PCP and we have had our rounds at times but then I think about some of the things he says and know he's right. We also have to realize that they may have medical issues also and can relate to us but still try and do their job. My thought would be to find another Councellor if this one is too rude. Councelling has kept me alive. I became more suicidal from all of the pain as some of us seem to do with RSD

As far as getting out. I have trouble with that but I do have friends that make me get out now. I walked through the antique stores here with my friend Wed. and we had to quit after so many but it was nice. We live in the antique capital of Colorado so there are a lot of them. I also have a friend I help in her consignment clothing store. I have started walking again to get my weight back down. I am enjoying that.

I use to go deer and elk hunting with Bill so I can relate to the hunting thing. Spending time in the mountains here is like being in Heaven and I miss it too.

You will get better, it just takes time. It does spread on all of us, none of us seem to get around that. Hopefully what will happen with you is that your meds will start helping you more and the pain will calm down some.

I had blocks, Physical Therapy, meds, triggerpoint injections, the works and it took 10 years to get me to doing better. It's not an easy road for anyone with RSD.

You will most likely never get to where you fully accept that you can't go back to work full time or at all, you can't do all the things you use to do but God willing you will get to a better place soon.

Hang in there.
Ada