fatigue vs. weakness: terminology help needed!

[rsb]

I posted earlier this week after seeing my neuro, an appointment where she seemed to literally confuse me with another patient.

One thing I forgot to mention in my post is that I brought a typed log of my symptoms, both to help with my cog fog, and because I can no longer write more than a few words without my hand spasming or giving out completely.

At the beginning of the list (for no reason, really) I had "extreme fatigue, especially between 2 and 6 PM". This was the only symptom she noted as she put the list in my chart, and she said, "you probably have fatigue from sleep deprivation, which is most likely causing your seizures as well. Or maybe you're just tired because of lupus."

I tried explaining this was debilitating fatigue- I'm a solo parent of two kids under 5 with medical issues, I know how it feels to be chronically sleep deprived. This is fatigue that makes the idea of getting out of a chair seem insurmountable. When it hits, I pretty much can't do anything but lie down (often in the floor, wherever I happen to be) and try to get my batteries charged enough to move again.

She wasn't understanding, so I said it felt impossible to move my limbs. She said, "I know, you just said you have weakness in your arm and leg." And I do- but this is quite different.

I'm trying to make sure I'm being clear and accurate with my language, as I'm seeing my rheumatologist Monday, and she's my best hope for getting some symptom relief, if possible, while I wait for my lupus meds (I'm on plaquenil, methotrexate and will soon add rituxan) to have an effect.

I know a lot of this is subjective (how many times I heard "pain is what the patient says it is" in nursing school! ), but I'm curious to hear what terms others use.

For me:

Weakness. I've had it in my right arm and leg for 10 months, and it got significantly worse in late July, never has returned to baseline. Some days it's actually to the point where I'm dragging my leg. My arm feels almost disconnected from my body- sort of the same feeling you get after hanging from a pull-up bar for a long time. If I try to hold my 29 lb two year old, my arm simply gives out within about a minute.

Fatigue. I compare it to the horrible GI bug I had last winter- I lost 10 lbs in 3 days, slept on the toilet, ended up needing 3 bags of IV fluids to rehydrate. When the fatigue hits me, I am at it's mercy. Right now, the kids are both sick- I got a very mild cold, but my neuro symptoms are much worse, and the fatigue is getting more frequent. It's almost like an invisible wall is set up somewhere, and when I run into it, I simply can't keep moving anymore.

Now, when I'm walking and my thighs turn to jelly and I can't walk anymore- is that muscle weakness? Fatigue?

I know there are meds that can be used to combat the fatigue. What about muscle weakness? I've been on prednisone for a few months now, and it certainly *improves* the weakness, but I can't stay on pred forever.

(FWIW, I've found plenty of discussion of the same sort of fatigue hitting lupus and MS patients, but actual muscle weakness- not pain- seems to be uncommon in lupus, so I'm not finding much about it anywhere.)

[jbell2435]

Hi Rachel,

I'm so new here, so I don't have answers, just wanted to send positive thoughts and big hugs your way!

I can't even imagine going through this when my children were young...

I'm sure some of the regulars will have some answers. My fatigue is afternoon and worse as the week wears on and the more stressed I get. I've been using 1 swig of 5-Hour Energy dietary supplement in the afternoon to get me through until I get home.

Good wishes to you..

[Mamabug]

Rachel --

I think I know EXACTLY what you mean. The fatigue you describe is also what I experience. It is not a "sleepy" tired,as from sleep deprivation. It is not a "muscle" tired, as from working out.

It is simply an extreme fatigue that makes it impossible even to have the energy to get out of the recliner and walk to the bed.

I don't even have the energy to keep my eyes open, although, as I said, I'm not sleepy tired. It is such a neurological/MS tired. That's the only way I can describe it, because I have not experienced anything like it, prior to MS.

I don't have the energy even to watch TV. My brain is just tired. It is such an extreme fatigue.

I don't know how to tell you to describe it to your doctor. The way you described it here makes sense to me. Because I've experienced something similiar, I think, if what I explained is also what you are talking about.

But, I've explained it over and over to my husband, and he just doesn't get it.

He simply believes that I need to "push myself" to exhaustion more often, I think, because he believes that it will build stamina.

What?! Build stamina? If pushing ourselves built stamina, then all of us who pushed ourselves to keep working when it was difficult would be improved by now, not continuing to progress.

We have a progressive illness. Although we may improve after a flare, our residual symptoms are not going to improve. They are going to continue to decline.

Sorry -- on my soapbox. Preachin' to the choir. Etc.

I wish, though, Rachel, that MS doctors could "get it". Surely, they've heard explanations often enough, from enough people, that they would begin to understand.

I don't generally experience weakness, as you describe it.

I do have stamina issues, but, that is different, somehow, from the fatigue that I talk about. I think, though, that one way to say it is my lack of stamina (for example: being unable to go on a walk, even a stroll, for more than 15-20 minutes, being able to clean my house only in short bursts -- I no longer do it myself, I hire a housekeeper; participating in certain activities that include a lot of bending and standing/picking things up from the floor, etc) contributes to/causes that extreme fatigue when it occurs.

But, again, I don't have an easy way to explain this to a doctor. Hope someone else can chime in and help you.
~ Faith

[heliotrope]

Your description of fatigue definitely fits what I've got - and what my neuro will try to treat for. I have a sneaking suspicion, though, that your doctor may have heard muscle fatigue when you said fatigue. Definitely not the same thing as weakness!

[Shiela]

Don't know if this would be helpful but here is an article written in terminology that your neuro would 'get'. Perhaps it would help you to explain your fatigue (although the descriptions you gave here seem thorough enough to me).

http://www.ncbi.nlm.nih.gov/pubmed/10773859

[dlb61]

My feeling is that 'weakness' is a constant, can be measured. Those push me, pull you tests the doc usually does. Fatigue is more of an invisible, unmeasurable thing. Like pain, unless you could actually feel it, it's very difficult to fathom another person's sensations. It's probably a tough thing, even for medical professionals.

[Hawkgirl]

It sounds like everybody here gets it, that fatigue and weakness are not the same thing. I often get the fatigue and it really is debilitating. And sometimes my legs are weak and it's hard to lift them to put on pants. It's not the same thing.

If I were in your shoes, I'd change doctors. Or else correct her that YES, your arms and legs are weak but that is NOT fatigue!

[mjan]

Oh dear Rsb.. so sorry for ALL you are struggling with..but hey, is that neuro you see an MS neuro? Geez...

I describe my fatigue as when I can no longer sit up nor hold my head up. OH at first I try to hold up my head with my hands.. then even then it seems to weigh a ton. Walking.. nope.. can't do when I a THAT fatigued. AND you cannot plan for it. Pace myself..but sometimes its like getting hit with a mack truck.

So I admire you for what you try to do..but dang your doc.

Faith, Mamabug explained it well too.

At least WE all get the difference!!

Hugs my dear MS World Friend.. Jan

[chalknpens]

Fatigue and Lack of Stamina are my terms ... while I don't think weakness is connected to these terms, I was sent to physical therapy to "recondition" myself, and it did help with what I called weakness ... and when I stopped, and began skipping at home exercises, that weakness returned. Note to self: get going. But oh, the fatigue that limits any desire to get going ... and the lack of stamina when I do talk myself into starting ... what a vicious cycle.