Originally Posted by Sarah Mae

On Wednesday, I went to see a new doctor--a pain management doctor. He said that he prefers to start off his patients (with severe pain) with more aggressive forms of treatment, rather than trying something like physical therapy that would probably make matters worse.

The first step is that as soon as my insurance pre-approves it, I am having a bone scan done to rule out/check for RSD/CRPS. I do have peripheral neuropathy, but have pooling of blood in my legs and feet that turn my skin dark purple (nearly black) when I sit or stand. Therefore, I am bedridden and have been for almost 5 months. I have to keep my legs and feet elevated at all times.

After the bone scan, there are three options. The third was shots in my back, which I simply cannot handle. It's a combination of my back being so sensitive (I have 5 things wrong with my lower back) that I don't even want anyone to touch it, let alone stick a large needle in it. Also, I am fine with shots and having blood drawn--but I have to watch or I freak out and get scared. To have a shot in my back would not sit well with me. You could tell me that I was having a major surgery tomorrow, and I'd sleep fine tonight. If you told me that I was having a shot in my back in a month, I'd be up every night for the next month worrying about it. That's just the way I am.

The second option is a pain pump, which isn't a good option for me. First of all, he said it only had a 30% relief rate for most people... which isn't much. Granted, my body doesn't tolerate pills, so I don't get ANY relief right now... even 30% would be nice.... but it's not as good as the other option. Also, I only have one functioning kidney, and medicines (especially these narcotics) can be hard on kidneys. The last thing I need is to damage my kidney and have to get dialysis or a transplant.

The first option he gave me is the SCS. While I've done some research and found out that this option would include a shot in my back (which terrifies me.. I mentally just cannot get over that!), I do think it would provide the most relief if it works for me. He said people generally see 50-70% relief with this. I've read quite a few posts on this forum and personal stories. What I haven't been able to find out, though, is exactly what is done the day of the trial or the surgery. I'd like to know, step by step, how it is done. Is it just one shot? I know there is at least one incision--how many are there? I am a person who won't do anything unless I feel 100% prepared, which includes knowing exactly what will happen to me. I'm wondering if someone can walk me through their experiences--what they remember anyway.

I've been trying to find a few people who have been through this that I could connect with while I go on this journey. I am only 24 and the majority of my friends stopped talking to me when I became bedridden. Everyone makes excuses and says that they don't know how to handle this much pain--they just don't know what to say. I personally think that's stupid. I have a friend who lost her dad last year to cancer and just lost her mom last week to cancer. Have I ever lost a parent? No... Have I ever been through anything similar? No... Do I know what to say? No... No words will make her feel any better... but I sure as heck am not going to walk away and leave her in the dust just because I don't understand and haven't been there... and I am quite disappointed that my friends have done that to me. Granted, I still have quite a few close friends that would never walk away--and for that I am extremely grateful. Even so, they haven't gone through this. The most pain they've had is a broken bone or strep throat. They haven't experienced 16 years of chronic pain and being bedridden for almost 5 months. So while they are wonderful friends--they can't relate to these decisions I am having to make. I'm hoping to connect with a person or two on here that would be willing to walk along this journey with me.

Thanks for reading... I appreciate your time!