Amen. Wish and pray for more Dr's to study this and research it bc it's a disease that makes you feel crazy describing it and also living it. There aren't many who have even heard of it. My primary was the 1 who read this and went you are my 2nd case. She said she had studied this and now understands more about why I feel the way I do.
I was shocked until I went home and googled this then I cried but I was so grateful for a diagnosis FINALLY. Archie speaking w you makes me feel good bc you can relate. Thank you so much. Sherry.
I have looked for treating doctors & even tried to give PCP information, but little to know interest. One PCP said she would not even give me Medrol dose pac, for fear that i might get Cushing's disease. She basically left me high & dry, had to go to ER & wait 6 hours to get seen. I've had ER docs, tell me i''m crazy, more or less. I have tried to be my own advocate, repeatedly. This is as frustrating as the condition itself. Think many doctors are tired of practicing medicine & there is big shortage of specialists in Phoenix valley & snowbirds make it worse. I have had 5 PCP's quit in last 2 years. Having an accurate diagnosis is important, but the adventure starts after that
I have that fear also of being back in the wheelchair. I've noticed I can't get my back bone near my butt to relax at night to sleep , any suggestions ? I also have been waking up to have to lift my left leg with my hands to get it out of bed while sitting til I get circulation back in it to get up. It's like lifting a dead weight. These new symptoms are worrying me bc I remember these from before I had surgery . If any one knows of ways to relieve the pain in this area to sleep , even lying on my sides isn't relieving it , it would be greatly appreciated. Thank you Sherry.
I am having huge sleep disturbances, waking up every night at 130 am & can't go back to sleep. Something is often numb & don't know if it's my anxiety, fear of no longer walking with my walker or? Seems my overall anxiety just increases, as i never know how bad things will be day to day. It's a bizarre condition. Guess some people are stationary, while other's progress. I am so tired i am a virtual zombie. Not much good going on. How can u plan if u don't know if u can walk?
I am having huge sleep disturbances, waking up every night at 130 am & can't go back to sleep. Something is often numb & don't know if it's my anxiety, fear of no longer walking with my walker or? Seems my overall anxiety just increases, as i never know how bad things will be day to day. It's a bizarre condition. Guess some people are stationary, while other's progress. I am so tired i am a virtual zombie. Not much good going on. How can u plan if u don't know if u can walk?
Hi Lauren—Archie here. I feel your anxiety. Sometimes I think anxiety and AA go hand in hand. As you know I have had AA since 1978 and anxiety started in the mid-1990‘s The answer for me was/is alprazolam (Xanax). I have needed as much as 1mg 5 times a day, but now do just fine with 1 mg 2 times a day. Early on I had full blown panic attacks- thought I was going to die… the whole 9 yards. It has been a lifesaver for me.
Be aware that thereis some thought among pain management docs that benzodiazepines (like Xanax) don’t play well with opioid drugs. I’m here to say “horse pellets”! Been doing it for over 30 years and have pain and anxiety pretty much under control. A good sleep med, Zolpidem (Ambien) is also a benzodiazepine, so here in Florida I had to find and go to a Psychiatrist who could confirm the anxiety /sleep issues problem , and write scripts for each. Also had to write a letter for file to my Pain Management guy.
This is too long, so I’ll write about your” I’m not gonna walk” anxiety later. Best, Archie
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I have looked for treating doctors & even tried to give PCP information, but little to know interest. One PCP said she would not even give me Medrol dose pac, for fear that i might get Cushing's disease. She basically left me high & dry, had to go to ER & wait 6 hours to get seen. I've had ER docs, tell me i''m crazy, more or less. I have tried to be my own advocate, repeatedly. This is as frustrating as the condition itself. Think many doctors are tired of practicing medicine & there is big shortage of specialists in Phoenix valley & snowbirds make it worse. I have had 5 PCP's quit in last 2 years. Having an accurate diagnosis is important, but the adventure starts after that
I am having huge sleep disturbances, waking up every night at 130 am & can't go back to sleep. Something is often numb & don't know if it's my anxiety, fear of no longer walking with my walker or? Seems my overall anxiety just increases, as i never know how bad things will be day to day. It's a bizarre condition. Guess some people are stationary, while other's progress. I am so tired i am a virtual zombie. Not much good going on. How can u plan if u don't know if u can walk?
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1 ReactionHi Lauren—Archie here. I feel your anxiety. Sometimes I think anxiety and AA go hand in hand. As you know I have had AA since 1978 and anxiety started in the mid-1990‘s The answer for me was/is alprazolam (Xanax). I have needed as much as 1mg 5 times a day, but now do just fine with 1 mg 2 times a day. Early on I had full blown panic attacks- thought I was going to die… the whole 9 yards. It has been a lifesaver for me.
Be aware that thereis some thought among pain management docs that benzodiazepines (like Xanax) don’t play well with opioid drugs. I’m here to say “horse pellets”! Been doing it for over 30 years and have pain and anxiety pretty much under control. A good sleep med, Zolpidem (Ambien) is also a benzodiazepine, so here in Florida I had to find and go to a Psychiatrist who could confirm the anxiety /sleep issues problem , and write scripts for each. Also had to write a letter for file to my Pain Management guy.
This is too long, so I’ll write about your” I’m not gonna walk” anxiety later. Best, Archie