NeuroTalk Support Groups - Not being able to attend family gatherings

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Not being able to attend family gatherings (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/190117-able-attend-family-gatherings.html)

Quote:

Originally Posted by Vrae (Post 993982)

After I read your post, this quote came to mind.

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.

Eleanor Roosevelt (1884-1962)

I can relate in every way to what you are going through. You do sometimes feel as though you’re being punished and that your body is like a torture chamber. You want to be your former self. I believe there is a grieving process while becoming this new version of you.

IMO you MUST find a doctor who will treat you, and work to get your pain under some kind of control. Even if that means that it will be a hike to do so. Hopefully you will find someone who can help.

I know it feels like no one gets it, but anyone on this forum with this condition knows exactly where you are at. I promise you that I have had days where I have had thoughts of checking out. I always come back to how awful that would be for those who love me. I have children who still need me, to the point of my exhaustion sometimes, but they really do still need their mom even if I’m not the same person I used to be. My point is, you can do this, but it’s going to be work (and that sucks, but it is true).

I feel for your situation and how hard things are for you right now. PLEASE remember that every ounce of stress is causing you more pain. I say this and yet I too am still trying to learn the art of Zen. Try to do something like take a bath. Something that will relax your body. Try and distract yourself. Perhaps that will help. Look around at the stressors in your life and start to figure out what can be eliminated.

Your relationships, all of them probably, will change and evolve. Those who are true to you, will recognize that you can only do what you can do, and will be as accommodating as possible. Many times I have felt the frustration of trying to enjoy a “good time” only for it to be cut short because my body was screaming. I think there is a fair amount of work to learn acceptance. I am not even sure that is possible for me. No doubt that I get angry and sad from time to time. Hell yeah, it’s frustrating, and not one person that I know personally could ever possibly comprehend what I have been through, or what I’m going through now, or my fears about what is to come.

All this to say, hang in there Angelina! You CAN do this, and somehow, someway, perhaps it will all be okay.
:hug:

I thank you for this. I have started to try to find the stressors in my life and eliminate them. I am having a hard time with one of these because the main one is my youngest sister. She is constantly putting me down telling me that she has RSD too and that I should handle it better like she does. (which I know she doesn't have it by facts), Tells me that I am not good enough, just always has bad things to say to me...things that are hurtful and put me down and stress me out. (Like I am not a good mother or person in general because of my pain) So I have decided to just avoid her as much as possible. Which really hurts and took ALOT of thought and trying to work through it first but I just couldn't take it. It is hard getting used to your relationships changing. Having people judge you because you have changed but they will not find out why, they just judge you instead and assume the worse.

I do believe in distraction. I have a lot of them. They help so much. I am very grateful for all my distraction techniques and for all of you on here!

Finz; you are so right. I don't know how I would deal with the pain. I am fortunate to have a doctor who specializes in Pain Management and whose opjective is to help me get thru each day with as little as pain as possible.

Gerry

Quote:

Originally Posted by Angelina55 (Post 993968)

I talked to my doctor and he put me back on my original meds. I am not back to where I was yet. I think I need to get 'caught up' then my pain will calm down. This crazy weather we have been having is NOT helping! Storms and temp change is sooooo not good for pain. But at least I have my pain meds back and that is helping. :) Tomorrow I will be talking to my Family doctor. I am nervous. I don't really know what to tell him, or where I need to go from here.

Although I have a primary care doctor; he is well aware of my need to be involved with a doctor specializing in Pain Management.

In fact, when I have had surgeries, I am fortunate my Pain Doc is affiliated with the same hospitals because he is aware of the additional meds needed because of my spinal issues, as well as periphereal neuropathy. The other doctors turn over my pain care to him.

Angelina, I do hope you will get the necessary care you need to make each day more tolerable.

Gerry

Quote:

Originally Posted by Angelina55 (Post 993968)

Sorry for the slow response, I was under sedation for nerve block. Have you already tried those? Sorry, I should remember since I know you already went through he!! with the trial SCS.
I hope your primary doc. gave you a referral to a different pain doc. That's how I found a good one - I went through 2 - asked for ANOTHER referral and think I have a good one now.
I'm glad you're eliminating as much negativity as possible. My P.T. gave me the best advice that you must be your own best advocate because so few people understand our condition.
No matter how much I just wish someone would speak out for me I try to remind myself what she said. Then I try to make myself say & do what I wish someone would do for me.
On top of your CRPS I know you've had incredible hurdles as well. My heart goes out to you and I hope you feel the support over the miles. :hug:

Quote:

Originally Posted by AZ-Di (Post 994260)

I have done nerve blocks. My doctor wants me to do acupuncture now. I have already been to the pain management doctors in my area and they have already sent me on my way saying they can't help me. :( Thank you for the support. I really need it right now. I can feel my positivity slipping away. :(

Quote:

Originally Posted by Angelina55 (Post 994458)

I am so sorry you have not been properly treated with Pain Management physicians. Most of them realize what chronic pain can do to a person and are more proactive in treating the pain. I was fortunate to be referred to my current Pain Management doctor by my orthopaedic doctor.

Hold on Angelina........ I pray you will soon find the help you need in dealing with all this pain.:hug:

Gerry

Hi Ang,

I'm relieved that you got your doc to put you back on your previous med plan. That's moving in the right direction. I understand that it's only a temporary fix. If he doesn't "get" it, we can all guess that he won't have the best long term pain management plan for you. I understand that searching out a doc who does "get" it is difficult.

I'm lucky to have a great neurologist right now. Because my insurance has denied other treatments for my RSD, pain meds are my plan for now. I currently take Cymbalta, Neurontin, Nortriptyline, Piroxicam, Norco, and MS Contin. I am in a MUCH better place pain management wise than I was years ago. Life is by no means perfect. I still have to recognize my limitations, so I can't do everything I'd like to (or, even most of it :rolleyes:), but I can do more than I could and I can enjoy more time with friends and family. I can LIVE, instead of just being alive. My neuro writes for my narcotics. Some idiot at my health insurance company doesn't like my neuro, and he is no longer on their list of preferred providers. That means that I can't use my insurance to pay for them. I can only afford them (over $200 a month) because I'm still married. After my youngest graduates from high school next year and I get divorced, I'll be screwed. I SHOULD be looking for a new neuro now, even though I LOVE mine, and start saving that money, but it's so hard to figure out how to find another doc who gets it.

Let's be honest, we can't just call around to dr's offices and ask the receptionist if that doc prescribes narcotics. We REALLY can't just try a new doc, transfers our records to him, go in for a visit and find out THEN that he doesn't prescribe meds, so then we have to try another new doc, and another.....and now we are "doctor shopping". It is hard to not appear to be "drug seeking" when we are, in fact, seeking meds to help with our pain OR a cure/treatment that would fix everything. I don't want to ask my neuro for a referral to another doc, because I don't want to insult him or change neuros. I have asked my primary doc to help with my dilemma, she refused. I would like a new primary MD, but I just switched to her 2 years ago and I don't want to switch again now and then again in the next year or two post divorce when I move.....because that would look like doctor shopping.

I understand that it's difficult to search out the right doc. Transportation issues.....how far away the office is, how often you might need to see him, if you can tolerate driving, if you need to arrange a ride.....can be a huge issue. Wasting more time waiting for an appointment with yet another "pain specialist" who only does injections that don't work for you......Feeling uncomfortable about insinuations by some docs/their staff because you are a chronic pain patient......It's easier to just try to get through the day and say you'll "deal with it tomorrow".

Well said Finz - you should be assisted by the RSD groups to publish that in every medical paper around, send a copy to every doctors surgery in the country, not to mention the drug companies and insurance guys. If only they understand the difference between a chronic pain sufferer, and a drug seeker. The two are poles apart...

Hope you are having a better day Angelina :)

Bram.