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Do you get body-part-specific PEM?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by nettle_tea, Nov 16, 2017.

  1. nettle_tea

    nettle_tea

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    I've been searching for a diagnosis for 2+ years. I thought it was probably ME/CFS, but as my illness has become more severe, I'm less sure. For the last 3 months, I've been dealing with flare-ups of severe muscle weakness in my legs. I used to bike to work, 3 miles each way. Suddenly, I couldn't even walk one block or climb one flight of stairs. At times, I've been using a cane to get around my house, but my doctor thinks I need a walker. The problem is specific to my legs, and often comes with tingling and slight numbness. I had an MRI, and EMG, and a neurological exam - all normal, except for some hip weakness in the neuro exam.

    It's hard for me to tell if it's true PEM, because there is often a delay between the exertion and the crash - I've become good enough at staying within my energy envelope that I rarely push myself into crash territory in one day, but if I overdo it and don't schedule enough time to recover, a crash can come days or weeks later. What confuses me is that these symptoms are so specific to one part of my body. It seems to be happening in response to me using my legs too much, and then I feel the crash mainly in my legs. It doesn't have a huge effect on my arm strength, and doesn't always come with the need to lie down. This is really odd to me - in the past, my crashes were a full-body thing.

    Have any of you had this experience?
     
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  2. alkt

    alkt Senior Member

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    in my first three years the problems with my legs where the most debilitating symptom having to concentrate on each and every step it was like walking on a jelly with legs made of rubber as those symptoms eased I became more aware of others . me the disease that keeps the patient in suspense of whats next. and true pem for me always starts within 12/24 hrs at least in my experience unfortunately crashes can last from a few days to many years ...
     
  3. Kati

    Kati Patient in training

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    Hi @nettle_tea I am so very sorry you are struggling with just getting a clear diagnosis after over 2 years of illness, despite being significantly limited in your activity and mobility.

    I wonder whether the MRI you had focused on the lower spine or was it for your brain too?

    Secondly, if you look at the Canadian Consensus criteria, do you get other symptoms such as sleep issues, orthostatic intolerance, and cognitive issues?

    Also some diseases take a few years before getting diagnosed. The fact that ME does not have biomarkers makes it difficult for the regular kind doctors in making a clean cut diagnosis. I wonder if you are in the capacity of getting a second opinion from another physician, or perhaps revisit imaging, EMG and neuro exams in say, 6 months or 1 year time? (Sooner if your condition deteriorates further)

    Sending best wishes.
     
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  4. nettle_tea

    nettle_tea

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    Hi! Thank you for the good wishes.

    Yes, I do meet the Canadian Consensus criteria, assuming that my crashes are true PEM. I have had more classic PEM in the past. I have pretty bad orthostatic intolerance in hot weather, but it hasn't bothered me as much since summer ended. I have unexplained pain, and often don't sleep well (and I'm still tired even when I do), along with various other less serious issues. I did have a gradual onset, though, which I know is less typical for ME/CFS and more typical for other similar conditions.

    The MRI was for brain, upper, mid, and lower spine. I got contrast dye for the brain and upper spine. They didn't find any evidence of MS (what they were looking for), but apparently I have a very small, benign brain tumor. The doctors say it's "incidental", meaning it's an asymptomatic tumor I would never have known about if I hadn't happened to have these other problems. But I will need to have it monitored periodically, in case it decides to grow. I got this news over the phone and had a hard time with it - at that point, I was almost hoping for an MS diagnosis, not more confusion!

    I had my first neuro appointment on Monday, and unfortunately the doctor was very dismissive. She cut off my questions, so I didn't get to ask many. I hoped to ask about the tumor - how often do tumors like this eventually need treatment? Could it possibly be causing symptoms, even if that's really unlikely? I also wanted to ask about possible false negatives in my other tests. I know that MS in particular can take years to diagnose. But she seemed to take that question as a challenge to her authority, so it didn't go anywhere. She's convinced I have fibromyalgia. I am not, as pain is not my primary symptom. It's definitely not the cause of my weakness. We didn't talk about ME/CFS at all.

    My primary care doctor is also not convinced I have fibro, and she's upset about the way I was treated. I expect I'll be referred to a different neuro for a follow-up, but I don't know how long that will take. The silver lining is I will definitely need regular MRIs to monitor the tumor, so if I did turn out to have MS lesions, I would know.

    The good news is I've been steadily recovering from the leg weakness, although I got excited and overdid it this weekend. Commuting all the way to the neuro's office kind put the nail in the coffin for a mini-crash, so I expect I'll be on the couch all weekend again.
     
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  5. nettle_tea

    nettle_tea

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    That is the feeling I have as well. Like my legs are made of cooked noodles.
     
    alkt likes this.
  6. pibee

    pibee Senior Member

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    Brain-part specific PEM, I have this on my mind lately a lot. My case of ME/CFS is weird because even though I am even sometimes doing mild sport and (at least before, now I cant tell lately too many changes and flares) was at least 80% active from normal, I get big problems with parts of brain with much activity. Specifically, my dyspraxia gets worse. Often, I can go to a rock concert, but I almost cant shower, because parts of my brain shut off while all else is working.. parts related to dyspraxia/apraxia.

    I noticed this a lot when i had big improvements on high dose vit D.. I'd reverse at least 60% my lifelong dyspraxia, if I was not pushing myself physically. As soon as I'd get to my full 80% ME/CFS activity, my dyspraxia improvement would shut off, and ADHD, and I'd become again my usual, extremely unorganized in space, self.
    So is like only parts of my brain related to visual-motoric integrations are having PEM, or they can function at 30% while physical parts function at 80%.
     
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  7. Diwi9

    Diwi9 Senior Member

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    Yes, when I crash hard, I may feel it in my legs (slow heaviness), but regular crashes involve arm and hand weakness/fasciculations/lack of coordination/paresthesia. I know some people have difficulty walking, I've never come close to this. However, there are times when I can't open a jar, type, grip, or write. This disease has affected my arms and hands more than any other part of my body.
     
  8. Kati

    Kati Patient in training

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    Thank you for explaining. i am very glad you got a PCP that looks over things for you. i am sorry you could not ask all the questions you needed to ask the neuro, they were very reasonable questions especially considering the fact you were told on the phone.

    Personally during the course of my illness, I have had times when I would feel my exertion in my legs. One ofthe largest muscles of the body is the quadriceps, and the muscle cells have a lot of mitochondria in them. When I am in PEM, it feels like the mitochondria is being sucked dry. It’s just how I visualize things to make me understand what is going on. Maybe it is what you are experiencing? I have simply stopped walking long distances, by aquiring a mobility scooter. I walk what I need to walk in my appartment (daily activities) which is fine, but if I meed to walk for over 3 minutes, my legs start screaming. And I cannot walk and think or talk at the same time. This has helped me getting some quality of life (being able to go outside, get groceries, get to my doctor appointments when I know a fair amount of walking is involved) and I save energy for important things.

    By all means let us know how it goes, over time. i am interested.

    I am hoping the tumor in your brain just remains where it is and does not create major issues. Fingers crossed for you
     
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  9. Hip

    Hip Senior Member

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    It does not sound like PEM. Usually in ME/CFS there is not much difficulty in using your limbs; it's just that you later will pay the price for expending all that energy, a price in the form of PEM.

    There is a long list here of medical conditions in which the symptom of weak legs manifests.
     
  10. lansbergen

    lansbergen Senior Member

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    It was for me.
     
  11. Hip

    Hip Senior Member

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    In what way?
     
  12. lansbergen

    lansbergen Senior Member

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    My legs could not carry my body weight. I Had to crawl to the loo or getting upstairs etc.They could just stop working from one minute to the other.

    Futhermore I could not lift my arms high enough to comb my hair or get dressed.
     
  13. Hip

    Hip Senior Member

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    Wow that sounds pretty bad. I wonder if any other ME/CFS patients have experienced that kind of muscle weakness. I know that at my worst, I found it impossible to do more than around 5 press-ups, do to the muscles feeling too weak. In those days, I was close to entering into severe ME/CFS territory. But I was always able to walk.
     
  14. pibee

    pibee Senior Member

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    @Hip , i was wondering a lot, related to what you said, how Jenn Brea symptoms in Unrest look a bit atypical sometimes, with trouble w speaking and using limbs, too?
    With severe ME is hard to tell.
     
  15. nettle_tea

    nettle_tea

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    I was wondering about that too. My symptoms are atypical enough that I'd want to get PEM confirmed via a CPET test before I'd feel comfortable with an ME diagnosis.
     
  16. pibee

    pibee Senior Member

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    I am a bit confused what is PEM too, because I never really feel well :) and I dont crash because just thinking of "exercise" is making me crash most often (maybe this is PEM lol)
     
  17. Hip

    Hip Senior Member

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    Yes, I've been on the border of severe ME/CFS (severe ME/CFS is when patients tend to be bedbound with sheer exhaustion for most of the day), and I had a sort of weakness of the muscles in that state of near severe ME/CFS

    But I felt it was not really muscle weakness that I had (in that I could lift a heavy weight on a one-off basis if necessary), but more just an extreme lack of stamina of the muscles, so that after just 5 press-ups, I found my arms turning to jelly so to speak, because it felt like the muscles had become totally exhausted and depleted of energy, and so became weak due to lack of a power supply.

    The CDC Fukuda definition of ME/CFS does not mention muscle weakness at all, but the CCC definition of ME/CFS mentions muscle weakness as an ME/CFS symptom several times, although it does not qualify or quantify how much weakness can be present, nor explain the precise nature of the weakness.

    As I say, in my case, it appeared not so much a lot of muscle strength, but a total loss of muscle stamina, so that after several repetitions of muscle usage, the muscles became weak, seemingly due a depletion of energy.
     
    Last edited: Nov 17, 2017
  18. nettle_tea

    nettle_tea

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    This actually sounds similar to what I feel, although I have been describing it as weakness. The rheumatologist I saw asked me several times whether I meant weakness or fatigue, and I didn't know how to answer. It is different than the whole-body heavy feeling I get - what I would describe as fatigue - but it's not like my muscles are wasting away, either. If an emergency happened on one of my bad days, and I needed to run up three flights of stairs, I'm sure I could, but I would certainly crash afterwards.
     
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  19. nettle_tea

    nettle_tea

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    I found a study that addresses this question! It irks me that it's in the Journal of Health Psychology, but I'll take what I can get. (Note: the authors do not seem to subscribe to the psychosocial model, thank goodness.)

    Deconstructing post-exertional malaise: An exploratory factor analysis

    Mcmanimen, Stephanie L ; Sunnquist, Madison L ; Jason, Leonard A
    Journal of health psychology, 24 August 2016 [Peer Reviewed Journal]


    Abstract
    Post-exertional malaise is a cardinal symptom of myalgic encephalomyelitis and chronic fatigue syndrome. There are two differing focuses when defining post-exertional malaise: a generalized, full-body fatigue and a muscle-specific fatigue. This study aimed to discern whether post-exertional malaise is a unified construct or whether it is composed of two smaller constructs, muscle fatigue and generalized fatigue. An exploratory factor analysis was conducted on several symptoms that assess post-exertional malaise. The results suggest that post-exertional malaise is composed of two empirically different experiences, one for generalized fatigue and one for muscle-specific fatigue.


    The full text is behind a paywall, but here's a snippet from the discussion section. (Hooray working in academia!!) Emphasis mine:

    The EFA indicated a two-factor solution with one factor focusing on generalized symptom complex exacerbation and the other focusing on musculoskeletal system fatigue. The General factor was composed of 12 PEM symptoms related to a generalized feeling of physical or mental fatigue following exertion. The Muscle factor was composed of five symptoms that referred to pain, weakness, or fatigue in muscles following exertion. This finding indicates that PEM is composed of two distinct constructs that may warrant separate assessment during diagnosis. As shown in Table 3, 94.9 percent of the patients have at least one symptom that occurs at least half of the time and at moderate severity (the 2–2 threshold) in the Muscle factor and 99.3 percent of the patients have at least one symptom in the General factor. The 5.1 percent of the participants who did not meet any symptoms in the Muscle factor had significantly better functioning levels and were more likely to work part-time or full-time. This finding suggests that there may be a subgroup of ME and CFS patients who are less impaired than the rest of the patient population. Additionally, it is important to note that although the results indicate two distinct constructs within PEM, the majority of participants are experiencing symptoms in both the Muscle and the General factors.

    Here are the "Muscle factor" symptoms:
    • Muscle weakness after minor exertion
    • Muscle fatigability after minor exertion
    • Muscle pain after minor exertion
    • Next day soreness or fatigue after nonstrenuous, everyday activities
    • Dead, heavy feeling after starting to exercise
     
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  20. Hip

    Hip Senior Member

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    The full text is available on SciHub.
     
    nettle_tea likes this.

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