LindsayIf you read my last post, you know I have been dealing with some neuropathic pain recently. After suspecting gabapentin may have contributed to the rapid spread of pain, I temporarily stopped the gabapentin.
It turns out I was wrong. The gabapentin didn’t cause it; that’s just the nature of my neuropathy – everywhere, and on fire. I restarted the gabapentin, and after about a week, it started to kick in. The pain is mostly a well-controlled mild-to-moderate with occasional flare-ups, so long as I remember to take the gabapentin daily.
I still think it’s odd that my small fiber neuropathy came on so suddenly and spread so quickly, and I’m not yet ready to accept that this is just how things will always be. That might be naive, but right now I need that hope to cling to.
Life has been challenging lately – I was home from work for a couple weeks due to the SFN. My second week back I came down with a bad cold/flu, which turned into a sinus infection and bronchitis, which is now morphing into antibiotic nausea/barfiness after my doctor prescribed penicillin yesterday. So I have been out sick, yet again. My mom was temporarily kicked out of her assisted living center last week because they’re worried about her swallowing issues (she can’t swallow liquids or foods without choking – unfortunately it’s part of her disease) and sent her to a rehabilitation facility. Her living center didn’t tell her what was going on – she called me one day in a panic that they were taking her somewhere and she didn’t know where. For someone who can’t walk, can barely see, can’t dress, feed, or bathe herself, that must have been terrifying. I’m supposed to get on a plane to go see her in two days, and with this stupid cold/flu which is on its 8th day and showing no sign of surrender, I’m wondering if I’ll have to cancel yet another trip. I have not been exercising at all, and I worry that I’m undoing all of the great strides I have seen with my POTS in the past year.
I don’t mean to complain, but at the same time, I get really tired of pretending they’re all good days. This cold/flu will go away. I’ll finish the antibiotics and be able to eat regularly again. And someday, I’ll figure out this neuropathy. I even have a few theories I’m working on now.
But as for now, I just wish I could get things back to the way they were.
“Have you ever seen bugs trapped in amber?…Well, here we are, trapped in the amber of this moment. There is no why.” – Kurt Vonnegut
Smell ya later.
– Linds
Hi Lindsay, I just want to tell you how I’ve experienced set backs lately and found these to be disappointing because I, too had made progress that seemed indicative of sweet recovery. If we can imagine ourselves improving our health in a line that goes from a to be but it’s like more like a line on a cardio gram rather than one that inclines only upwards, we can see progress over the long term. So while it might feel like two steps back with only one forward, it’s actually lots of little steps that when looked at as a whole (like on a cardio gram) they show us that when we are putting in effort, striving for progress, we are recovering, improving and making our lives better all the time; it’s just difficult to see it when we suffer setbacks and our perspective only focuses on those setbacks, and it often takes time to be able to see our blessings. Such is the nature of our illnesses that we could drown in the disappointment, worry and hiccups.
I’m sorry about your mother and do hope her situation improves and you’re able to get to see her. Much love and friendship, Miche xoxo
That is so true. Progress isn’t linear. While things haven’t been great lately, I still think I’m doing much better than I was 10 years ago before being diagnosed.
I’m sorry that you have also experienced setbacks.
I’m pleased at least the Gabapentin is working and your pain is more manageable. So unfair, though, for you to have caught a really nasty virus on top of everything else and I totally empathise with the feeling that just at the moment it’s all too much especially with the worry of your Mum. Feel the same way myself!
Sending hugs x
I am so sorry you are having all these issues at one time. Are you taking Plaquenil? It’s been a life saver for me. I was initially started on it when I was diagnosed as UCTD, probable Sjogren’s. After that was ruled out they found instead Pandysautonomia, SFN, POTS, EDS 3. I went off the Plaquenil and by the 4 week mark I was curled into a fetal position crying from the nerve/muscle pain and feeling like I was being tazered constantly. My Neurologist, Dr. Cook is now prescribing it for my SFN. I don’t know what I’d do without it.
I’m also broken hearted about the situation with your Mom.
Sending lots of positive thoughts and vibes.
Thank you! I have not taken Plaquenil before. I’m so glad to hear it’s helpful for your SFN! Do you take anything else for it?
I also take 100 ml of gabapentin at night. I have a very weird reaction to any drug that affects serotonin. I get knots the size of plums in my large muscles. No one knows why. I also have autonomic neuropathy as well. I am doing SCIG 2x weekly in home. It’s been great. I have gone from bed bound for 5 years to being able to take walks around the house. My SFN affects my vagus nerve so I am having to go slow. When I asked Dr. Cook about exercise his response was Very Little & Very Low. So just embrace the joys of being verticle, lol.I did IVIG for 3 months and had such a dramatic improvement I was able to move to the SCIG. My orthostatic hypotension has disappeared for the last 3 autonomic tests. It’s just really hard when you finally feel good to not be able to get up and do something…anything🙄.
I was going to ask if you had tried IVIG! That’s great that you had such a dramatic improvement with it!!
Oh Linds, you’re having such a rough time with it all. I often think ‘I wish things could just go back to how they were’, and that’s just back to the usual yuck-ness, because even that’s appealing when things get really bad. At least you tried the Gabapentin theory, I do hope you can figure out whether any of your other suspicions may be to blame. Sending lots of hugs your way xxxx
Hope you’re over your sinus infection soon Linds. And to be going through all this with your mother ill must be so emotionally and physically draining. I hope you cut a break very soon. Thinking of you x