Mayo Pain Rehab Program: Signing off and my comeback afterwards

Thank you for this post. I have been VERY hesitant to undergo any invasive procedures for pain management. I realize that one intervention can and most probably will lead to more. Each time the body is disturbed it can lead to more problems.

I had neck pain on one side 3 years ago. I persisted in doing PT at home just about every day (still am to this day), and attended 3 stretches of professional physical therapy at 3 different places.

I had an appointment at a pain management doctor and his advice was I needed 3 nerve blocks (or epidurals or whatever they shoot in there to try to help relieve pain) on that side of my spine. This was after looking at my MRI and sending his assistant in to point it out to me on a diagram in the wall. I asked for some nerve pain medication and was given 100 mg Gabapentin.

I decided to wait to have the nerve block, because I was basically scared. I read about possible side effects and wasn’t ready to take the risk. Then my neck pain finally went away!

About 2 weeks after that appt., I was diagnosed with Sjögren’s syndrome, an auto-immune disorder. I saw a rheumatologist and started on hydroxychloriquine. That was almost 2 years ago. Many of my pain issues are a result of that disease, and the pain migrates around my body. My rheumatologist says one of his patients calls it “the pain of the day”. Migrating pain is hard to shoot with a needle!

4 months ago my neck pain reappeared, this time on the left side. So debilitating at times! I got so tired of the pain I decided to have a go at pain management again.

I think the video that Rachel posted is a great example of why we need to be cautious and not hurry into surgical or other interventions. So often it is our stress level, the stresses of life, travel, COVID, you name it, we all have it.

I realize many of my most painful times I had over the past couple of years, I was stressed out about something, one major thing being stressed about being sick. The constant surprises presented by my auto-immune disorder are the main stresses. First one thing is wrong, then another, seemingly unending. This has been a tough year for me. I had a melanoma on my back, I tore a calf muscle, I was diagnosed with neuropathy, I had a biopsy and cyst removed from let’s just say you don’t want to go there! I was sure I had cancer. So all these things can contribute to our pain.

But I am doing better now on the neck pain again, I recently am weaning myself off of Gabapentin after suffering some horrible side effects after going up to 900 mg a day (to try to get relief). I’m glad I waited a few months to go see the pain management doctor.

Thanks again for a different perspective, one from you who have tried the intervention route and found it made things worse. I hear that a lot! So we can learn from each other, and encourage each other too.

I also have arthritis. I found a wonderful massage therapist who is only 5 minutes from my home in Gulf Shores, AL. He’s very skilled and knowledgeable and easy to talk to.

My daughter had me take a massage appointment she couldn’t make here in Michigan, so found another very talented person to help me. I agree, therapeutic massage can really help!

Jetsetter, what were the side effects you were experiencing at 900mg? I have been taking 3600mg a day per my physician. I am so ready to get off of the gabapentin but very scared because I tried it once and it was pretty much a time from hell!! And there is nothing out there that will help me get through my days! Thanks for listening to my rant! I apologize!!

@jetsetter You have an amazing perspective. I'm impressed by your insight and patience to think things through and ride them out, for instance your neck flare, and how stress affects pain.

You mention weaning yourself off Gabapentin. As you're finding out that can bring very unwanted side affects if not done slow and carefully under Dr. guidance. Please consult your Dr. for a safe plan.

Finding distraction from pain is a helpful tool. What distracts you? Are you able to get out and enjoy nature?

Hello @gail4, I'm Rachel. Welcome to the conversation. I'm sorry you are challenged by chronic pain. Have you discussed how you feel about Gabapentin with your prescribing Dr.?

I did but my doctor said there was nothing else out there that would help. Thanks for answering me. I am getting desperate.

I am well aware of the dangers of weaning off of Gabapentin too quickly. I had been on 900 mg for only a month (increased from 300 a day for a few months before that for neck and back nerve pain) when I started having strange symptoms with my eyes.

I went from 900 day to 300 in too short a time, based on the pharmacist incorrect recommendation. She said that since I had dropped the midday 300 mg dose for 3 days, I could go ahead and start 100 mg 3xs a day the next day.

I woke the following day with extreme dizziness and vertigo. Luckily, it diminished within a few hours. I then called my PCP and she recommended I take 100 mg 3xs a day for 7 days, 2xs a day for 5 days and then 1x a day for 5 days, then stop. I could accelerate the decline in dosage faster if I had no adverse side effects.

I am now almost done with the 100 mg 2xs a day dose and feel better already! I don’t think the drug helped my pain that much, so I will continue to use less extreme measures such as heat, exercise, my TENS machine, and Tylenol for pain management. It may be that I am not experiencing a flare right now so that could change, only time will tell.

Yes, I have many distractions, I love to sew. I make quilts for foster kids.

Right now, I am staying near my daughter for a few weeks while she awaits the birth of her second son. My husband and I are helping with the 3 year old and will stay with him when they head to the hospital. I love to walk outside when my feet work. We purchased a second home nearby her house and are busy with furnishing it and getting organized to spend more time here.

I had recently increased my Gabapentin dose to 900 mg a day from the 300 mg a day I had been on for about 3 months, because of increased neck pain. Previously I had been on 100 mg 3xs a day for about 2 years and stopped about a year and a half ago because my pain had decreased. I had no trouble stopping then.

Once I had been on the 900 mg a day for about a month, I started feeling like I had dementia! I couldn’t remember things and constantly searched for words. I was spacey and just out of it.

My husband said to me one day “I don’t think you know what you’re saying”. That scared me.

The symptom that finally helped me decide to get off of it was when I started having strange eye movements. Pressure behind my eyes and even when I closed my eyes, my eyes seemed to be dancing around in my head. Hard to describe, but enough to convince me to start weaning off of it.

I know many people are on much higher doses than I was on. It is very important to steadily wean off of it, for some people, it can take months.

There are always alternatives to try. Maybe it’s time to find a new doctor who is willing to explore other drugs or other treatments to help you with whatever pain you had that led you to this high dose of Gabapentin.

I wish you the best and I hope you can find some solution to help you through your day. Let us know how you are doing!

Jetsetter thank you so much for telling what you have been going through. What you said your husband was noticing struck home with me. I have also had times of not being able to come up with words and sometimes even a whole train of thought and was, as you shared, it was scary. My battle began 41 years ago when fibromyalgia was just coming into the medical picture. In the first ten years I was prescribed upwards of 30 different medications. At one time I was taking 12 different medications at once. In the beginning I was told that it was all in my head because fibromyalgia didn't exist. After seeing three and four different doctors telling me it was all in my head, I went into a depressed state of mind. And, of course, I was then prescribed antidepressants. It was during that time where you didn't talk about mental health. But as my husband has always said(by the way he is my biggest advocate and I know I am very lucky and blessed to have him and a family who have always supported me in my journey) we need to treat and understand that what goes on above the shoulders can affect the pain that is going on in the rest of a person's body. I have tried massage therapy, acupuncture, hot and cold therapy, I have gone to a chiropractor to get adjustments. I am allergic to ibuprofen and Tylenol doesn't even come close to touching the pain. Probably the biggest problem I have been having, besides the constant pain is the guilt I feel. I see other people going through medical stuff that is so much worse than what I am going through that I feel guilty complaining about my problem. Ok, I am sorry about writing so much. You just don't know what a blessing you all are to me by relating what you are going through and suggesting different things to try. Thank you!!

I can understand having guilt due to so much attention needs to be taken to deal with these health issues.

I can tell you that if you look around, there are always people who have it worse than we do. You can be empathetic to their plight and help out with a smile and a look in their eyes as you encounter them. It’s so easy to just look away because we don’t want to interact or acknowledge their physical disability. But they are like us, we who have the invisible disabilities which are no less difficult. Treat yourself with kindness!

I found a book called “Chronic Babe 101: How to Craft a life beyond Illness” that really tells it like it is. I bought it on Amazon for my Kindle.
Jenni Grover starts by reminding us that our illness is not our fault.

Each chapter has lessons for us to do. One involves having a 10 minute pity party. Set the timer, yell, scream,
stomp your feet or whatever you feel like doing to get that anger and frustration out that often comes about when you have a chronic disease. When the timer goes off, end of pity party!

Venting about your feelings here is a great help, because in some measure we understand and can relate to your pain and heartache. Hang in there!!