Chronic Fatigue

Seem to be going through a lot of chronic fatigue lately, it always starts with my neuropathy pain getting worse in my feet, then creeping up my legs. Rheumy told me last time that she thought it was “something else” but did not elaborate, (don’t you just love doctors!) This conjures up a lot of possibilities, from Fibro, to MS. I will nail her down next time I go in.
Today it started at 2pm and went until 8:30pm, comatose. While in this state, my cat does experiments on me to try and get me to move, he pokes me in the face with his claw, I guess he is either entertained or concerned about my condition…
On a side note, my so called “Pain Management” doctor, can’t do my radio frequency ablation until June, it is already overdue, then they wanted me to do each side of my SIJ separately, and since the insurance is not going to pay this time, (they did last time) they quoted me $650 per side, I reminded them that the insurance would only pay $570 for both sides, so they lowered the price to $650 for both sides, but still have to do it separately. I don’t like the idea of the extra radiation from the fluoroscope as there would be some duplication, I am sure they are more concerned with making a little more money. They couldn’t even schedule me to see the doctor to try and get a alternative treatment, so I am probably done with him… I think this is because of the “war on drugs” pain patients are opting for radio ablations instead of opioids.
So I am trying to see another pain doctor, one that will hopefully manage my pain, the nice lady said “they will call you”… Ya right…

1 Like

Hi Jon,

You’re certainly going through some battles aren’t you? I’m glad the cat though is checking if you’re still alive. They’re always so particular in checking. How is the hole in the head? Otherwise are any other pain doctors better than the one you’re about to dump?


Hi, hole in the head is healed up nicely, but still have nerve pain where he must have hacked on of the small nerves in the forehead. Next will probably be my nose, finished chemo creme but the area is growing back already.
This chronic fatigue is almost worst then the pain.
I don’t know if the new doctor will be better, I will get a second opinion, I have not burned the bridge on the other yet. I like my old doctor, the staff is over worked and not very caring.

1 Like

Hi Jon, frustrating, isn’t it? I’ve had some severe fatigue the Rheumy says is not arthritis (and I finally believe him), for nearly two years. I had no neuropathy at the start, but after around 6 months it joined in - so I get episodes of 3 - 4 months of severe fatigue, with restless legs, neuropathy, headaches… the full list is much longer… then it subsided for a few months. Then off we go again. I’m going to a neurologist tomorrow. Don’t expect much out of it, but if there’s anything useful, I’ll report.

In the meantime, hope the ablation docs get their acts together for you! (And your cat shows affection by cuddling instead of poking… what am I thinking, then it would be a dog!!! :joy::joy::blush:)


Rheumy’s are starting to not treat fibro, but Neurologists don’t want them either, Fibro refugees… I was going to ask my Rheumy to refer me to someone that will help, like asking her, “do you know any good Rheumatologists?”

1 Like

:joy: do you know a good rheumatologist :joy: Fibro has been put in the too hard basket for so long!

I’m pretty sure mine isn’t fibro (no pain or tender points, which seem rather essential to the diagnosis), but, like most specialists, I imagine if they can’t personally measure it, they won’t treat it, so who knows how we’ll go.

Has your Rheumy done a tender point examination on you? What do you do for your feet? (Mine just tingle, so I put some arthritis spray on them, the heat seems to distract the nerves, and the tingling sensation gets “forgotten”). It’s the fatigue, balance and coordination that make life hard when it happens.

1 Like

Yes, I have done the tender point thing years ago, I have been Dx’d several times with Fibro! They don’t do that test much anymore, kind of a 90’s thing… My mother has Fibro, I was at her house a while back, lightly touched a tender point, she jumped off the chair! She said “what did you do!” then proceeded to push the spot and yelp several times… ( she is resilient at 91)
I have tried different things over the years for me feet, I even have some cannabis topical cream, nothing helps, so I just try not to think of it. Pretty much have to get off my feet when I have a flare, usually afternoon/ evening. I get hot feet in the summer and cold feet in the winter, it would be great if they could be reversed! I had a foot doc tell me I could heat the office with them… Now they are mostly cold and clammy like my hands, I use my cold hands to ice my sore neck and shoulders.
On a happier note, I get to see the new pain doctor Friday! Maybe he will have some ideas, he really doesn’t know the mess he is getting into! Reminds me of the movie, “What about Bob?” I am the Bob character, “baby steps to the kitchen…”
I have amazing balance, I can stand on one leg for hours if I wanted, used to piss off the physio doctor as they wanted to break you by making you stand on inflated balls, I would just happily stand there…

1 Like

There’s just no getting around it: cats are weird. We have three. Weird, all of 'em.

I recommend getting a dog or two (or…) to balance things out. Dogs are not weird. They like two things: you and routines, particularly routines relating to food, or walks. Much simpler. We have five dogs, which may be a little excessive. I just spent $300 on flea collars, for example. Oh well. If it weren’t for them, I might waste my money on a snowmobile or yet another vintage sewing machine. (Actually, I just bought a 1947 Elna Grasshopper: maybe I need more dogs.)


I can completely relate to your fatigue. I had to start a prednisone burst today so I could walk, talk and work! I think my flare is due to Spring allergies - do you think that could be a contributing factor for you?

1 Like

Never had allergies for spring, mostly mold, and new carpets do me in. I will be meeting with my Rheumy Wednesday when I get my Remicade infusion, so I will ask her. She has been cagy and hinting it may be something else. I think she is thinking MS, the reason being, I have a neuropathy flare with the fatigue, so doesn’t want to worry me. The fact that I have great balance, kind of shoots holes in that idea. This last flare on Sunday was so bad, the sensation went up to my waist, previously it would stop at the knees. It is just kind of a prickly restless leg syndrome kind of sensation, followed by hours of fatigue. I went to visit with my Mom for Mothers day, so I had a 7 hour round trip mostly on mountain roads, took a jacuzzy at my Moms and also got a one hour massage at the half way point comming home, ao that might have triggered it.

I feel for you in regard to the fatigue… I’ve had years of it… for me it mostly hits in the afternoon… before Mtx I would need a 3-4 hour nanna nap to keep it under control (most days)… on the Mtx that has reduced to 1/2-1 hour, and I even get away with a few days without the nanna nap :smile:… The last few days the fatigue has hit pretty bad, barely out of bed Saturday and most of Sunday, yesterday a little better, am hoping today might see the last of the worst of it… ah well… I can but hope :blush:

All the best with your appt. on Wednesday!! Do let us know how it goes!!

I hope your fatigue subsides soon - I know how debilitating it is and how difficult it is to explain to others.

1 Like

My response to treatment for this issue is focalin. It helps alot. Better mental clarity along with the main issue of reducing debilitating fatigue.

What type of doctor did you go to prescribes this? GP?
So are they diagnosing the chronic fatigue as ADHD or is it being used off label?

This is common. My arthritis doctor. It is a practice that I understood as common. It helps alot. The low energy and chronic fatigue. It helps me function. Two birds with one stone–brain fog and energy. The starting dose is 10 mg once daily in the morning.

1 Like

I will mention it to my Rheumy, so far she is ignoring that part of the disease, I am tired of changing doctors…

Thanks very much Woodworm, I’m having a reprieve from fatigue at the moment (if it lasts, I’ll post the long and involved story), but if it cames back, I’ll look this up. :grin:

I take narcolepsy medicine - Nuvigil to help with my fatigue. I got the prescription after several conversations with my Rheumy and GP with a final briefing paper that I read to the docs explaining how the fatigue was affecting my life.

1 Like

So I asked my Rheumy about my fatigue, she pretty much said nothing works well, best to just sleep through it. I told her I self medicate with shots of espresso, she loved that!
She is not really into any off label drug experimentation.

My rheumy and myself disagree. I find it works quite well. It is not experimenting. It is called a common treatment option. I reside in America. Doctors frequently choose overlap medication to use in their tool box. To say otherwise is not being truthful.
For example, aspirin am I using it for my heart or for my headache? I use it for both. That is one of many.

1 Like