Learning and struggling

[Savanna1!]

Thanks for the welcome, which came to me in January. This is my first post. My symptoms started many years ago, but my doctors and I thought it was nerve damage from an infection following a lower bowel resection. I was treated for years and years for nerve pain. I did everything I could to heal - PT, acupuncture, massage, all the meds, anti-inflammatory diet, Reiki. When I described the various types of pain I felt, the one I told my doctors I simply couldn't tolerate was this "creepy, crawly feeling from hips to toes," which no one could understand. I developed severe periodic limb movement at night, which my doctors blamed on high levels of gabapentin. So they took me off of it, and my pain was managed for more than a decade on a long-acting opioid.

Last fall, the opioid stopped being enough, and I had a new doctor who wasn't willing to make adjustments. I'm a university researcher in a different field, so I decided to figure it out myself. This is when I became convinced I had RLS, not nerve damage. I went through some tests - MRIs & EMG (horrible!), and a basic iron test (70), and all agreed RLS made the most sense. I chose to wean off my long-acting morphine-based opioid b/c I thought I don't need 24-hour treatment when my problem is only at night. Maybe this wasn't wise, but if you take an opioid, you know how you are treated like a criminal, and I wanted to be free of it if I could. It was pretty awful, even though a slow wean, and I am now taking long-acting pramipexole. I also stopped two SSRI anti-depressants. For a short time, I took a short-acting dopamine agonist, but it just couldn't cut it. Most of my doctors and I believe I've had RLS for years, so once on the drug holiday, my symptoms became extremely severe.

I worry about augmentation, of course, but gabapentin is on my drug allergy list due to the PLM. Historically, I tried both Cymbalta & Lyrica, and both brought on suicidal ideation. So my choices are limited. It's either the extended release dopamine agonist or opioid again, unless I'm missing something? I do have a few questions for the group:
- I was looking at a study yesterday about a potential connection between irritable bowel & RLS. Has anyone else heard about this? I continue to have bowel problems but again, have always associated it w/my lower bowel resection, which I had to have due to endometriosis infiltrating my lower intestine.
- I've noticed my feet become unbearably hot in the first couple hours after taking the dopamine agonist, whether it be short- or long-acting. Does anyone else have that problem?
- I'm taking Reacted Iron at 29 mg. Is that a good dose? I'm up to 80 on my ferritin as of the last test. I take this type due to my fragile stomach/bowel. Does anyone know if the reacted iron is better & if this is enough of a dose?
- If I had to return to a long-acting opioid (I hope NOT!), I've seen methadone used often. For those who take it, is it difficult to get? Are you treated like a drug addict/criminal just for needing it?

Thanks everyone. Savanna1!

[Rustsmith]

Savanna, welcome to the group.

As for iron, the normal recommendation is that you should be taking a dose that contains at least 65mg equivalents if iron (the bottle should indicate the equivalents). You have to compare equivalents between types of iron since the overall dose varies with whatever the iron is combined with (sulfate, gluconcate, etc). Depending upon what your reacted iron is reacted with, there may also be a need to take it with vitamin C to help keep it available for adsorption in the small intestine. It is also important to take it on an empty stomach and not to take another mineral (calcium, magnesium, zinc) or thyroid med at the same time.

As for a connection between IBS and RLS, the question comes up occasionally and although there is a connection, it probably has to do with problems with iron adsorption in IBS. Your ferritin is almost at the target of 80, so that should not be relevant in your case.

As for methadone, I have been taking it for six years now. It works great. The only issues that I have had were 1) finding a doctor to prescribe it when my GP retired last year (it took three weeks, but the new one understands and is very supportive), and 2) occasional strange looks or pushback at the pharmacy, but my current pharmacy has been great. The other advantage of methadone is that it is very inexpensive. I think that I pay something on the order of $3/month.