[Sonny1]

Well I am home from my appointment this morning. I was a nervous wreck knowing we had to discuss the stellate ganglion block, which I agreed to for April 4th. YIKES!!

I fell a bit weird with this doctor. She seems to have this attitude of "suck it up and get over it". I explained that I could not take the Lyrica due to it making my vision very blurred and her response was "you are just going to have to push through things".......HELLO, I need to see. She continued with "every medication has side effects and you just cannot stop taking them because they make your vision blurred or they make you throw up etc" I'm thinking, I am trying to relieve pain not add it. So I agreed to go back on neurontin and "deal" with the exhaustion it caused me, at least I will be able to see!

OK, now that I freaked out, I do have an actual question. In doctor's report it states "The patient has symptoms which could fall in the diagnosis of CRPS-1." Is there ever a definitive diagnosis? or is it just wait and see if more symptoms appear? I am lost. My last visit she said you have CRPS, so here I am thinking i am going crazy~

[byates]

Originally Posted by Sonny1

Well I am home from my appointment this morning. I was a nervous wreck knowing we had to discuss the stellate ganglion block, which I agreed to for April 4th. YIKES!!

I fell a bit weird with this doctor. She seems to have this attitude of "suck it up and get over it". I explained that I could not take the Lyrica due to it making my vision very blurred and her response was "you are just going to have to push through things".......HELLO, I need to see. She continued with "every medication has side effects and you just cannot stop taking them because they make your vision blurred or they make you throw up etc" I'm thinking, I am trying to relieve pain not add it. So I agreed to go back on neurontin and "deal" with the exhaustion it caused me, at least I will be able to see!

OK, now that I freaked out, I do have an actual question. In doctor's report it states "The patient has symptoms which could fall in the diagnosis of CRPS-1." Is there ever a definitive diagnosis? or is it just wait and see if more symptoms appear? I am lost. My last visit she said you have CRPS, so here I am thinking i am going crazy~

It took me ten yrs of searching to find a doctor to give my daugther a diagnoses. All of the doctors said it was in her head or just said it was fibromyalgia. One doctor even diagnosed her with fibromyalgia without even turning around to look at her. She is 18 yrs old and has full body CRPS. She just completed her first ketamine infusion. She did get some good results from it. The CRPS is not gone but is better. She tried Lycria and did not do well with it. First of all it did not help anything. Then we she was trying to stop it, she was unable to sleep. It took at least a month to get her sleeping again. So be carefull. Good luck...

[gramE]

When you have teenagers, advice often given is 'pick your battles'. When you have CRPS you sometimes must pick your pain. We have an imaginary scales at our house where we "weigh" out our choices. I find my self more and more using it to decide pain level vs benefits and this doesn't only include meds. Activities that I know are going to leave me "feet up" for a couple of days, dinner out, then sitting in the car while my husband does some things he wants to do. Sometimes I make the wrong choice. The dull eyesight is something I would not choose either, but the sleeping meds I'm taking now leave me slow moving most of the morning, but sleeping 9 hrs a night has lowered my pain level a bit.

But you also must learn about your own body and how it reacts, I am more sensitive to somethings that most normally aren't and I have to put up a battle to get my point across.

Don't give up. Keep doing your own research. Try and keep ahead of the game, and clearly notate your reactions but give them time to adjust in your system.

Best to you,
Pat

[lorigood243]

Dear Sonny

Please dont go back to this doctor!!! find another one. I have gone to many doctors to finally after 5 years getting a diagnosis of RSD. i have been to many pain clinics and if they want me to take meds i dont want or like...i leave..there are more fish in the sea. Tell your primary care that you didnt see eye to eye with the pain doctor. give you another month of meds until you find someone else to go to. This dr obviously doesnt have a drop of compassion in her body for what you are living with! cancel your appointment and move on. thats what your gut is telling you based on what you wrote. im just saying it out loud for you. RUN FAST
Lori

[gabbycakes]

Originally Posted by Sonny1

Well I am home from my appointment this morning. I was a nervous wreck knowing we had to discuss the stellate ganglion block, which I agreed to for April 4th. YIKES!!

I fell a bit weird with this doctor. She seems to have this attitude of "suck it up and get over it". I explained that I could not take the Lyrica due to it making my vision very blurred and her response was "you are just going to have to push through things".......HELLO, I need to see. She continued with "every medication has side effects and you just cannot stop taking them because they make your vision blurred or they make you throw up etc" I'm thinking, I am trying to relieve pain not add it. So I agreed to go back on neurontin and "deal" with the exhaustion it caused me, at least I will be able to see!

OK, now that I freaked out, I do have an actual question. In doctor's report it states "The patient has symptoms which could fall in the diagnosis of CRPS-1." Is there ever a definitive diagnosis? or is it just wait and see if more symptoms appear? I am lost. My last visit she said you have CRPS, so here I am thinking i am going crazy~

Sonny1,

I would not go back to that doctor if she paid me. I have had RSD and PN for 7 years and have been with the same PM Doctor/Office and have never been told something so rediculious when I complained about a side effect of a med. or a treatment which I had many, many. Just start looking for a new doctor. What part of the country do you live in? Maybe someone can make a suggestion.

Gabbycakes

[Sonny1]

Originally Posted by gabbycakes

Sonny1,

I would not go back to that doctor if she paid me. I have had RSD and PN for 7 years and have been with the same PM Doctor/Office and have never been told something so rediculious when I complained about a side effect of a med. or a treatment which I had many, many. Just start looking for a new doctor. What part of the country do you live in? Maybe someone can make a suggestion.

Gabbycakes

I live in Rochester NY and i have spoken with someone on here that travels up here to a great doctor (who is 10 minutes from my house). I may go back to my surgeon and ask for a new Dr. This one was referred to me by my surgeon, who had only heard good things about her. I on the other hand just recently learned from another source that she told the source her pain was not caused by nerve issues but by her husband......really? that is crazy. I figured i would have the 1st injection done, see if there is any change and then move on....just one more stressor to deal with!

[catra121]

I have the diagnosis of CRPS...but it seems like everytime I see someone new it is always like they have to reconfirm that I have CRPS. 4 times I have gone through this and the new PM I am seeing sort of seemed like she was going to do the same thing but with all my other symptoms from this new thing she didn't really want to do anything with my ankle right now and since I am on the meds that helped me before I'm not as worried about the CRPS right now (it won't kill me). So to answer your question...you will often have people douubt you on the CRPS diagnosis.

As to the other stuff...while I am inclined to think that you should ask to see someone else...I also want to share my experience with my first PM doc.

He was the one who diagnosed me (and almost immediately with all my symptoms). After seeing doc after doc after doc who had no answers...he gives me this and as soon as I look into it and do some research it's like finally...an answer. Not a good one since it sort of sucks and all...but the truth and finally I know I am not going crazy. He gets me into PT and he gets me on the right meds. And for that I had 9 months of function (pain still at a 6 but I was able to get my life back). I was able to go back to work...even take a trip to Disney World.

But he was rough on me emotionally at times. He told me I just needed to walk. I needed to just do it and push through. He would almost yell at me and tell me to, "WALK NORMAL!" I got really frustrated with him for that. He told me to quit my job because it was only going to cause me stress (work related injury caused the CRPS and work comp was a pain). I didn't like that advice. He made numerous comments about my boyfriend and me not being married. He made a comment about me not falling after I had my first block with him because I would probably sue the hospital. I didn't like any of it...but I needed him to be a little rough with me to get me to walk normally. I read some stories on the internet about people who got their lives back by pushing through. And I think he tried to rile me up on purpose with the other stuff. It gave me the ability to stand up for what I wanted...with work, the boyfriend, and my life. I wanted to get my life back and I did. I wanted to go back to work because I love my job and I did. And I like the way things are with my boyfriend. I told him all this and I was happy. So even though he was rough and pushy...it gave me the backbone I needed to get where I needed to be emotionally to handle this.

Not saying that's what YOUR doc is doing...but while I was dealing with the doctor initially I was so angry with him for being so rough. But in hind site...it was what I needed.

As for the side effects...I was on Neurontin for a while and it didn't help at all and made me SUPER drowzy. I was sleeping 19 hours a day when I didn't have to work and falling asleep at the wheel when I was driving home from work. It was terrible. But it eventually subsided. Took longer than normal. When I first went on Lyrica I was sleepy for 3 days and then I was fine. These drugs do have a lot of side effects and sometimes it does take a while for the body to adjust to them. But the doctor shouldn't ignore what you are telling her or tell you to just get over it. That's unacceptable.

Good luck with things. This is an awful time when you are going through the experimentations to find out what helps you with your pain. CRPS is an awful condition that really is very scary at the beginning (and throughout). Just keep focused on finding something that helps with the pain and finding a doctor you feel comfortable with and who you trust to help you with your pain.

[Swatgen27]

Sonny1
Im sorry your appointment left you frustrated. I agree with the others, as if I take a new med and find it has to many side effects then I won't take them anymore. After all, it's my body but with that being said I always try the various meds for a solid month. Reason bring, the side effects usually dissipate after a few weeks. I would say 99% of the meds I discontinued was because I did not feel any changes in my pain levels.
As far as the comment the dr made about the diagnosis being potential CRPS type 1, I'm thinking she wants to see how your body reacts to the nerve block. If you fire this dr, please find another asap to treat you as the percentage of remission decreases over time and therefore right now timely treatment is important. Either way, I suggest that you still try the nerve block wether it be with the current pm dr or a new one.
Sarah

[Sonny1]

Originally Posted by Swatgen27

Sonny1
Im sorry your appointment left you frustrated. I agree with the others, as if I take a new med and find it has to many side effects then I won't take them anymore. After all, it's my body but with that being said I always try the various meds for a solid month. Reason bring, the side effects usually dissipate after a few weeks. I would say 99% of the meds I discontinued was because I did not feel any changes in my pain levels.
As far as the comment the dr made about the diagnosis being potential CRPS type 1, I'm thinking she wants to see how your body reacts to the nerve block. If you fire this dr, please find another asap to treat you as the percentage of remission decreases over time and therefore right now timely treatment is important. Either way, I suggest that you still try the nerve block wether it be with the current pm dr or a new one.
Sarah

I am sticking it out with this doctor for at least the 1st nerve block on 4/4/11. I spoke with my PT head honcho today about this Dr. and her lack of compassion and bedside manner. PT honcho knows this Dr. well and agreed 100% with my description of her, however said she is the person to go to if I want to see results. She sent her mom there last year for shingles pain. She explained to me that this Dr. is a no nonsense pity party woman, which I get. No pain no gain, but I do have some say in my treatment and treatment is not limited to pills, tests, injections etc., but people connection. So, I will give her a try and see what results I get, if I am not satisfied then we move on!!!

[SandyRI]

So how do you know your PT head honcho is qualified to make that judgment? Don't ever disregard your instincts...

some docs do blocks well, and many don't. Just be sure that your doc is board certified and really has a whole lot of experience in this line of business. Treating shingles isn't necessarily the same as performing a sympathetic block on the spinal column.

Good luck.