Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Describe Your ME/CFS

Discussion in 'General Symptoms' started by PhoenixDown, Jan 11, 2016.

  1. PhoenixDown

    PhoenixDown Senior Member

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    My M.E feels like a rheumatic disorder, I have varying degrees of injuries which limit how much/what activity I can do. My knees and ankles are so bad I'm bed bound. If I exceed my limitations not only does it induce pain but it permanently worsens the area I used, for example wrists, knees, or ankles. The threshold for further injury is permanently lowered, so I become brittler – it's a vicious cycle. In my legs the worse of the pain is delayed. I don't really get PEM or flu like symptoms, consequences are very localised not all over. My voice is not excluded and I haven't been able to talk without excessive pain since late 2014. The injuries don't prevent movement and I don't have an obvious limp, but as explained forcing activity worsens the pain and lowers injury threshold. My leg muscles are easily fatigued and build up of lactic acid happens fast.

    I still have many secondary symptoms, sleep disturbance, cognitive dysfunction, memory issues, sensory issues, etc

    Has anyone had experience with anything like this? Can you recommend any tests or treatments? @Jonathan Edwards

    I believe M.E is a heterogeneous disorder with different types.
     
  2. alex3619

    alex3619 Senior Member

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    What you are describing is how this started for me in the 80s. I has very tired all the time, but I never made the connection between what I was thinking was TATT, and ME. I only began to see it at the end of the decade. I was describing my issues as "muscle problems" and totally missing that I was using weekends and holidays to recover from working full time. I knew it was happening, but hey, everyone gets tired. Its a line we hear again and again, but until we realize its wrong we don't get to think about how to manage it.
     
    Last edited: Jan 11, 2016
  3. alex3619

    alex3619 Senior Member

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    It was the early 90s that my issues began to be recognizable based on modern criteria. TATT and muscle problems are not enough to diagnose this at the mild end of the spectrum. I was diagnosed with CFS in 89. I was essentially fully disabled, or close enough, by about 95 or so. That was the last year I did any work, and it was part time.

    I have had different stages or patterns of illness, each lasting some years. Its not been the same all the time. These days my fatigue is mostly in check provided I am very careful with pacing, and to do that at the moment I have to do less and less over time. Energy is low however, though in the first three minutes after waking if I have had a fair amount of sleep I have enough energy to do light chores. Just those three minutes worth.

    Sleep issues are major for me now, they didn't used to be. Memory is now one of my biggest problems. I forget stuff. Nearly all the time. Yet its not dementia as my reasoning is still good.

    So aside from lack of energy, most of my big issues are cognitive.

    Some time in the late 90s I mostly got over the flu like feeling, though it returns if I eat the wrong things, get an infection (it can take most of a year to recover from a cold or flu) or wear myself out.

    Sinus issues were always with me, though recently they got much worse. There are other respiratory problems too.

    Nerve pain and loss of sensation are still an issue, though I figured out this was partly due to med side effects. Any vaso-active med causes me issues.

    I should probably add that the damage I did to my muscles is still there. It took 15 years for the pain to die down a bit, and then it mostly faded. However if I misuse any of those muscle groups then it starts coming back fast.
     
    Last edited: Jan 11, 2016
  4. Skippa

    Skippa Anti-BS

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    My house is a mausoleum of unfinished jobs.

    The use of the word mausoleum is intentional.
     
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  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    If your joints are giving major problems the best thing is to get a rheumatologist to take a clinical history and do a physical examination. I personally would not bother with any tests before doing that because the clinical assessment provides 90% of the relevant information and will show which tests are relevant. To try to interpret tests without a clinical assessment could be very misleading. I think you need to get yourself to a rheumatologist or get one to do a domiciliary visit. That used to be a standard thing to do and as far as I know a GP can still request a domiciliary visit.
     
  6. justy

    justy Donate Advocate Demonstrate

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    Thanks for the info on the domiciliary visit - how does someone go about organising this - especially if the GP is the opposite of helpful?
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    I experienced today (standing/walking more than a few seconds leading to complete breathlessness and crushing pain in chest and back) and barely begin able to take a shower with my caregiver's help. I think it would be interesting to compare if anyone else with ME/CFS gets this symptom (orthostatic dyspnea) in a further attempt to clarify in my mind what I have and why I am getting worse.
     
    Last edited by a moderator: Jan 14, 2016
  8. roller

    roller wiggle jiggle

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    has anyone with standing/walking/breathing problems ever looked into pulmonary hypertension?

    i found this incredibly matching my symptoms - though only partially.

    however, taking viagra helped me much - as it does many of the PAH guys.

    PAH is also "not fully explained".
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    @roller Sorry, do you mean that the description of my symptoms matches yours or that the description of pulmonary hypertension matches yours? Just want to make sure I understand. Do you have ME/CFS or another diagnosis? I am not sure what I have at this point. What I have it totally different than what the original poster wrote which is always interesting to me when we compare notes.
     
  10. roller

    roller wiggle jiggle

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    i had this too.
    its now much better (anti-helminths and antibiotics), but still not easy.

    particularly the showering was super-difficult, as it was like suffocating.
    even when cold.
    this was already so, when i was very little. and happens also in the bathtub.
    the bathtub is mission impossible.

    and this is typical for PAH, i understand.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    @roller Am still confused if you meant my symptoms match yours or match pulmonary hypertension? I don't know what anti-helminths are but suspect we are talking about two different things. For me, a bathtub is a million times easier than a shower b/c I am supine/lying flat versus being upright.

    I've seen cardios and now a pulmonologist and no one has ever mentioned pulmonary hypertension to me. Is this common in ME/CFS? I googled it and it seems to imply that vasodilators would help you to breathe but I am the opposite and Midodrine (vasoconstrictor) actually helps me to breathe so I suspect that I do not have this.

    In general I posted this since the thread was about describing your ME/CFS (or your individual illness) and I still keep hoping someone else will share my symptoms and I can figure out where I belong! Worst current symptom is that I cannot inhale a normal breath and feel a tight belt around my upper chest and back. I wish I knew what to do for this.
     
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  12. Misfit Toy

    Misfit Toy Senior Member

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    @Gingergrrl ...what an awful symptom. I'm sorry. The breathing, the crushing pain. I had that with costochondritis but it's not the same I'm sure. It was the worst pain I ever had, but it occurred while doing something or nothing.
     
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  13. Valentijn

    Valentijn Senior Member

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    Since this is an ME/CFS forum, you should probably mention that you do not have ME/CFS when discussing your symptoms and treatments which have helped you. Otherwise it can get very confusing.
     
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  14. PennyIA

    PennyIA Senior Member

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    I saw this thread a few days ago and had to have a think about it.

    I think primarily that I know I have something remitting/relapsing. Because while I never feel 100% (shoot I'd be happy with 70%), there are 'flare ups' that seem to come on over a period of a few weeks or months that lay me out flat. Then I stop everything and focus on quiet and peace and just flat out laying down as much as I can; which takes a month or two or three before I'm back on my feet and as long as I'm REALLY REALLY careful and pace myself, so far, I've come back gradually to my half-life.

    BUT every collapse has been a bit different. I'm still not 100% sure I have ME/CFS, but it's the closes most plausible thing I can find. I do meet all the criteria for it I've ever found from CCC to the new SEID, etc. But I think I may have some mild hypermobility and/or EDS or some other issue that might be undiagnosed. AND I have previously been diagnosed with B6 toxicity (which I honestly blame for my first crash and either I'm not well yet; or it was chased quickly by ME/CFS). I've debated a few times if it might be MS but it certainly wouldn't be 'typical' MS and I've had about 6 brain MRIs from doctors looking for stroke or MS and nothing found there (and get ignored when I say 40% of people with MS don't have brain lesions).

    Year-round symptoms include frequent diahhrea, food intolerances, smell intolerances, increases in allergies, dizzy spells, PEM if I exert beyond 'current envelope', difficulty standing any length of time, muscle fatigue, frequent muscle pain, frequent muscle 'failure' where I'll be walking and one leg will spend about 2 seconds saying 'nope' or lifting something and an arm muscle goes 'nope'. SEVERE can't stand being vertical or even in a chair for another second fatigue as sitting requires muscle and there is so much pain from all muscles that only laying down at full 'rest' alleviates it.

    I'm sure there are more, those are just the ones that bother me the most on a regular basis.

    Major Flare up #1 - 2005 - dizzy spells and loss of sensation on the right side of my body and severe pain on the left side of my body built and built until suddenly being upright brought on such severe nausea within about 10 minutes, I couldn't sit up or stand up without pitching to the ground. Laying flat helped the world stop swirling and helped with the nausea. Pain was still bad, but flat out on my bed meant no work anyway. It took about 3 months for the constant dizziness to back off and let me get back on my feet. The pain died back to the aches I experience now. The sensation loss started to get restored years later after starting some treatment for Methylation.

    Major Flare up #2 - 2012 - sudden onset dizziness - laid out flat for a week. Thankfully this one passed much more quickly. Some rough guesses were that something got damaged and caused flare up #1 - which if one spot out of the three in the brain that control the body's 'placement in space' got damaged; it usually takes 3 months to recalibrate (docs' guesses); but that if suddenly that 'specific' spot started to work again? It would cause the body to go through another recalibration process, but that it might not take as long since it's had all three functional in the past, it's just a matter of retraining the brain to recognize all three inputs. My guess ? Severe POTS both times.

    Major Flare up #3 2014 - started to develop tiny painful swellings all over my arms, legs and trunk (about the size of a quarter). They were forming in the muscle tissue areas - none around joints, not just at skin or just under the skin... no discoloration. Doctors couldn't begin to guess... but I discovered if I marked the 'spots' with a marker that every night some of them would disappear and every day more would appear. I spent seven weeks laying down and ended up with them all disappearing. At one point I had a theory around lymph nodes and drainage issues; but I got better before I could test any theories. To this day, if I have a busy/active day I get a few 'lumps' that will go away with rest. So, they've become my pace monitors right now.

    There have been about 20-30 minor flare ups that feel like PEM that I haven't kept track of. But these are the three where I had to consider short term disability. Thankfully the second one was short enough that I didn't end up needing it. Even more fortunately I'm eligible for short term disability and long term disability through work. AND I can work from home to help reduce PEM when I'm on a down-ward trend and my 'window of activity' is shortened.
     
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  15. Kina

    Kina

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    This thread is being closed for moderation purposes.
     
    Last edited: Jan 14, 2016
  16. Kina

    Kina

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    This thread is now open again.

    All the comments about Armin labs have been split off into a new thread which can be found in the Lyme and Co-infections forum.

    Any other off-topics comments have been removed. We have a 'Reported Posts' system on this forum. One of the purposes of this system is so that threads aren't taken off-topic with complaints about how the thread is going off-topic which leads to more off-topic discussion.

    This thread was specifically about describing your ME/CFS. It wasn't about Lyme testing, it wasn't about people arguing about Lyme testing, it wasn't about how this kind of thread should be moderated. If you come across a thread that is off-topic, DO NOT discuss it on the thread, use the 'Report' post button to let the moderators know.

    Writing an off-topic post and then apologizing for being off-topic and then continuing the off-topic discussion is not helpful and shows a certain amount of disrespect for other members and the volunteers who have to sort these things out.

    It wouldn't be appropriate to make a new rule (as was suggested in a post on this thread) of not discussing Lyme outside the Lyme forum. Just like any other forum, the content of any thread should remain on-topic. At times, it is entirely appropriate to discuss Lyme on a non-Lyme thread depending on the thread. It's all about context.

    As per the suggestion that we have some 'house rules' re: debating about Lyme testing only in the Lyme forum etc -- we are not going to make rules for individual forums or individual topics. Off-topic is off-topic and this applies to all the forums and all the threads on this website.


    It's very important to be aware of what a thread is meant to be about and stick to the topic of the thread. Lately, we have had many instances of members taking threads off-topic with their own agenda -- over and over again. Please read our Forum Guidelines regarding off-topic posts.


    The bottom-line is to read the first post in a thread to get a sense of what it is about and stick to discussing that.

    Any further off-topic posts in this thread will be removed.

    Thank you.
     
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  17. roller

    roller wiggle jiggle

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    i also have joint pain in the hip, it may have started around 12. being on and off.
    i dont remember, at what time it never went away and since when its both sides.
    my mother, me too, tried glucosamine+chon+msm to no avail.

    what helps me are ciprofloxacine, ofloxacine, doxy too.
    others i havent tried really.

    i read, that joint pain may be caused by either gonorrhea or syphilis bacteria.
     
    Last edited: Jan 14, 2016
  18. A.B.

    A.B. Senior Member

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    Insufficient energy reserves.
     

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