Hi all RDS patient new to forum

[Dani100279]

Hi all I wanted to introduce myself I am 31 years old and suffer from RDS or the new lingo CRPS. It is hard to deal with especially finding the right medication to go along with my lumbar sympathetic blocks.

I also feel alone because the only other person I know with chronic pain is my mom. So, it is hard to be understood my fiance` tries his best but how do you explain a painful foot. It has now traveled from my right foot all the way to my hip

Thanks for listening I am just looking for options and support and I thought why not give this a try

Hope to meet you all and looking forward to learning from you all!
Mahalo~Dani

[Robert_325]

Hi all I wanted to introduce myself I am 31 years old and suffer from RDS or the new lingo CRPS. It is hard to deal with especially finding the right medication to go along with my lumbar sympathetic blocks.

I also feel alone because the only other person I know with chronic pain is my mom. So, it is hard to be understood my fiance` tries his best but how do you explain a painful foot. It has now traveled from my right foot all the way to my hip

Thanks for listening I am just looking for options and support and I thought why not give this a try

Hope to meet you all and looking forward to learning from you all!
Mahalo~Dani

Dani ...... RDS (Respiratory Distress Syndrome) is difficult to treat effectively especially when chronic pain issues are added depending on the pain severity. Respiratory problems cause distress obviously with breathing problems, hence the name RDS, plus pain meds can actually cause respiratory depression. So it's a "CATCH-22", a very tough situation to deal with effectively at the same time. You get anxiety from the respiratory distress and the meds that help the pain can make the respiratory problems worse.

The way you describe your pain it sounds like it could be nerve-related? What has the dr said? What type of drs have you consulted and what meds are you taking? That information would help me a lot. I would surely try to treat it with a non-opiate, something like lyrica or even as an off-label use Gabapentin might help. Again, I am grabbing at straws here with my limited knowledge.

This is neurologist and pulmonary specialists stuff here, I am not a dr. A good pulmonary specialist and neurologist working together may be able to come up with some suggestions for you. You need some "dr teamwork". Hope that helps you some. God bless.

[Dani100279]

I'm sorry I should have explained better I have Regional Dystrophy Syndrome or it is also called chronic regional pain syndrome. I do not have respiratory problems at all sorry for confusing you. Thanks for answering back. I hope to chat more It is supposedly the most painful of the chronic pain conditions which scares me because I am only 31 and this is a progressive nerve disease. So, I am really just looking for people who understand what it is like to live in pain constantly. I never get a break it hurts 24/7

Thanks for listening!

Mahalo~Dani

[Dani100279]

I forgot to add I take Opana ER 20 mg's T.I.D and roxycodone 15 mg q4h prn. I hate being on the pain medication but I must admit it has given me my life back. I would like to take less medication I wish the sympathetic blocks worked better, but they get me through the month. So, I always have to get one once a month otherwise the pain is unbearable I am hoping to meet other RDS/CRPS patients who understand the frustration I am going through.
Thank you for responding I appreciate it Take care!

Mahalo~Dani

[Robert_325]

Same initials are used for both conditions though the pain problem IS definitely more common. I should have asked you more questions. You did mention the pain is mostly nerve-related. Have you tried any of the aforementioned meds designed to assist with nerve pain that I mentioned before? God bless.

[Robert_325]

Same initials are used for both conditions though the pain problem IS definitely more common. I should have asked you more questions. You did mention the pain is mostly nerve-related. Have you tried any of the aforementioned meds designed to assist with nerve pain that I mentioned before? God bless.

As I'm sure you know the continued use of opiates is a situation where you will continue to build higher and higher tolerances to the rx opiate pain meds the longer you use them. Both the Opana and Roxicodone are very serious medications. Have your drs suggested any other routes than the continued use of rx opiate medications? :At least they don't have you on meds loaded up with acetaminophen eating up your liver. That's good news at least. confused:

RDS is a progressively worsening condition and results in serious pain problems. This is the time to address it if possible. I don't recall any active RDS patients on the forum at this time, though I may be forgettig someone. But people with your condition do come along here fairly regularly. Don't give up if you don't talk to anyone else immediately. God bless.