The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
Discuss the article on the Forums.

Fear for a worsening disease?

Discussion in 'General ME/CFS Discussion' started by hugoalexander, Feb 10, 2016.

  1. hugoalexander

    hugoalexander

    Messages:
    16
    Likes:
    23
    Hey everyone,

    I'm quiet new to this forum, but I've got a question.
    What I would like to know is if you guys have had quiet the same symptoms from the start until now, or that you've had totally different symptoms at different specialisms (e.g. cardiologist, neurologist, rheumatologist, optometrist etc)?

    I've had so many different symptoms in the past 3 years (roughly 60-70) and I feel it is progressing everytime.
    Especially the fatigue is getting worse and worse, that I shake a lot, my muscles start shaking when I do something active (can be even standing up) and I can't seem to train my muscles as they only seem to get less toned and more weak, somebody else with a similar motoric shaking when doing something active and getting weaker less toned muscles and more *skin*?

    Therefore I have a fear that I have this continuously progressing disease that nobody knows of.
    But then again, all my tests that have been done (tons of bloodwork, MRI's, ECG, eyetests, ECG and other cardio tests etc) showed no clear explanation or clear result, except the diagnosis of bradycardia (too slow heartrate), irregular heartbeat, severe dry eye condition, fibroymyalgia and ME (but not possible to test), three herniated discs in my lower back.

    I always believed that the symptoms of CFS / ME were quite the same during the disease, but maybe I'm wrong. Have you guys ever had the feeling that it was getting worse and worse and start to get afraid of e.g. getting towards sooner death? (it might sound dramatic, but I do mean it)

    Thanks and all the best to you!

    Hugo
     
    Last edited: Feb 10, 2016
    Mel9 and alkt like this.
  2. alkt

    alkt Senior Member

    Messages:
    188
    Likes:
    340
    uk
    sorry to hear your going through this. in the first 3 years i continued to get more symptoms but eventually the worst of them settled down i only get the muscular shaking when i have really pushed my limits [small as those limits can be ] i have now been ill for 25 years , fortunately their is far more information out there now and with the internet you can gain somewhat easier access .for a full symptoms list you could check out the hummingbird for m e website or search through pheonix rising near the bottom of the main page.hope you find having this information eases your anxiety . i know from experience that it is difficult to deal with so many symptoms nevermind trying to speak to a doctor about them without sounding like a hypercondriac . best wishes.
     
  3. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,323
    Likes:
    21,471
    Albuquerque
    I think that for most of us symptoms have changed over the years, but that doesn't necessarily mean looking for a variety of specialists. A doc who specializes in ME/CFS would be familiar with all of them and, though there is no treatment that works for all, there are treatments that help subsets. Such a doc might be able to offer you treatments that were appropriate for your symptoms and lab tests.

    The illness changes but that doesn't necessarily mean progression--though that sometimes happens. And sometimes specific symptoms do require specialists--like a cardiologist.

    Best wishes for finding some treatments that help you.
     
    alkt likes this.
  4. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,281
    Likes:
    45,811
    Trying to tone your muscles is likely to make you sicker. Rest might allow you to function a bit better, or at least stop further decline.
     
    alkt, Mel9 and hellytheelephant like this.
  5. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,895
    Likes:
    12,702
    Sth Australia
    for me its certainly changed the symptom patterns.

    My early ME years were all viral symptoms eg high fevers, very sore throats, swollen glands, cough. I also had FM and severe body pains (nearly in every part of my body). My description of my ME was like a bad flu.

    after I got better (the FM went when the ME did) and had a remission but then ended up sick again after catching a virus going around.. my symptoms came in clearly neurological without the previous strong viral pattern eg myoclonus, shaking, tremors and jerking, balance loss, loosing vision at times, Instead of fevers.. I felt very cold all the time.. like permaent icey feel, abnormal body sensations, oh and I developed chilblaines and raynauds too. I also developed leg drag at times and hyper reflexia. I had a very bad Rombergs test result..worst the neurologist had ever seen.

    I also deleveoped food sensitivies and MCS around that time too and also Morgellons. Interesting the severe FM I previously had didn't came back when I got ME/CFS again. (so obviously this illness, different stages of it must cause very different things to go on in the body). My description of ME was.. like MS and having Alzeihmers and other things all together. I used to refer to myself like medical pizza as I had so many different symptoms at once.

    Its shifted again since then. I no longer get raynauds, chilblains, jerking or the rhymatic myoclonus, I now rarely get body pain (only if I over do), Now my worst symptoms is the POTS (POTS collapses and all the symptoms around that)....and its more focused on my BP issues (both very high and very low) ..I say my ME is now more autonomic dysfunction focused.

    At this stage there has also been indication that I may have one of those holes in my heart opening at times PTO?? (leaking valves got picked up, the ones which indicate that. that didn't show up on 2 scans done throu the previous stages). My kidneys have started to show risk of damage which concerned a hospital dr etc. A scan showed my eyes being affected. So now I think of myself at an organ damage risk stage.

    Ive been severe through each of these patterns but each time in different ways.

    ME can be progressive.
     
    Last edited: Feb 11, 2016
    Mel9 likes this.
  6. ryan31337

    ryan31337 Senior Member

    Messages:
    444
    Likes:
    986
    South East, England
    I saw an ME specialist recently that reported to have just a few patients with a rapid progressive form of ME (i.e. likely to end up life threatening), presumably out of hundreds or thousands seen. In his opinion these were a rare exception and the other patients were presumably struggling short-term to find an equilibrium or had longer term relapse/remission. My experience of the illness over 20 years has been practically identical to @taniaaust1 albeit with migraine in the place of such severe neuro problems, my major symptoms seem to shift rather than gang up continuously. Oversimplified it would read:

    Recurrent infection, flu-like with pain -> remission -> Gut problems, food sensitivities -> remission -> Autonomic dysfunction -> ???

    Elements from each phase are ever-present for me, especially at times of more severe illness, but there has definitely been changing predominant symptoms over the years.

    If you feel its just getting worse and worse the first thing to do is look at your activity levels as others have suggested and make sure you're not over-stretching yourself - sorry if that's obvious to you, I don't know how well you pace. Hope you get it under control soon.
     
    taniaaust1, alkt and sarah darwins like this.
  7. CantThink

    CantThink Senior Member

    Messages:
    775
    Likes:
    1,560
    England, UK
    My main predominating symptoms & things appearing pattern is roughly:

    Viral/Flu/Lymph/FM -> 1991-1997
    Flu/FM/endocrine -> 1997-2006
    Endocrine/autoimmune/autonomic -> 2006-2013
    Mast cell/allergy&intolerance/autonomic -> 2013-2014
    Autonomic/gastrointestinal/connective tissue -> 2014-still continuing
     
  8. Mel9

    Mel9 Senior Member

    Messages:
    412
    Likes:
    975
    NSW Australia
    Morgellons? You may need to check whether this is really an ACA rash caused by long term untreated Lyme disease
     
    Art Vandelay likes this.
  9. Thomas

    Thomas Senior Member

    Messages:
    309
    Likes:
    410
    Canada
    Mine has been progressive since onset in November of 2011. Since that time I have gone from mild to relatively severe (but severe has many variations as we all know). But I also had gut issues for years and years before developing ME so I'm not surprised at my trajectory.

    I'm hoping that things will soon stabilize or even better will start to improve. Time will tell.

    Honestly pacing is important but I'm the stage where rest doesn't help but not resting makes things worse.

    Oh and I've seen and spoke to many ME doctors and I can honestly say that I don't think they have the slightest clue as to how you will fair or how your illness will go. They ALL told me they'd be shocked if I didn't recover within two years.
     
    CantThink and alkt like this.
  10. hugoalexander

    hugoalexander

    Messages:
    16
    Likes:
    23
    Hey @alkt @Sushi @Valentijn @taniaaust1 @ryan31337 @CantThink @Mel9 @Thomas thanks a lot for your replies and sharing some of your stories, that helps me a lot. When I read most of your stories I see that all of you have had very severe FLU's. From what I can read from your stories is that every case is different and there's no one single answer. Sometimes I feel like it's still a diagnose of exclusion (like the fibromyalgia diagnose I have as well). I tick all the boxes but I tick a lot of other boxes as well with additional symptoms that are not typically ME.

    Basically, I never had FLU's except always a lot of infections (throat, ear, sinus) that got treated with antibiotics.
    But after the antibiotics I always got back up again and functioned totally normal until 2013.
    Apart form that, I tick every single box of ME symptoms and also about 80% of Lyme symptoms, although I've been tested negative for the Borrelia Lyme.
    After half 2013, the extremer fatigue started to come, and all the other symptoms (about 30-40 most annoying onces I have mentioned) started to come as well.
    Although it goes with fases, where in 2013 I was still able to walk (running became impossible) for about 1.5km, right now I'm pretty much housebound where the smallest things seem like huge.
    Thinking is very hard, standing up even is hard because my muscles or just really weak and jelly-like (where I played professional sports from age 5-17 so it's so frustrating), lots of vertigo and I feel like I'm just not there..
    I get so afraid because of this, since my muscles get weaker, smaller and my entire body just just gets worse and worse.

    At this moment I'm was just to start taking amfetamines like Ritalin again and maybe even combining it with anabolic steroids to build up more testosteron and muscle stamina. It's a risky road, but I'm getting to a point that I'm literally feeling like having the flu every moment of the day (like I'm on heavy morphine) without the actual fever. Like lifting my arm up can be a challenge, with constant vertigo. I feel even more terrible since there's so much pressure on my amazing girlfriend (we used to do awesome active stuff together and now at 26 years old I"m like a sick grandpa). Last week I even ended up in the hospital again with heart attack like symptoms. They again said that I had this to slow heartrate (bradycardia) of around 45. But again, no explanation from the cardiologists, except that everything seemed okay. Then I start thinking again that all my symptoms fit into Lyme disease, but that I've been tested and the Borrelia bacteries have not been found, so negative Lyme test. The story continues..

    But in the end I feel that I also need to deal with my fear since fearing doesn't really help, it just contributes to even more suffering. But not knowing what's happening and going wrong with my body makes me so crazy. We all die in the end, I just don't want to have a sooner death without first experiencing how it is to have kids etc. Right now, I do know that I got a hypochondriac tendency and that this is not very beneficial for my condition. At the same time, I know lots of proven research on what the mind can do to the body. Even though there's a biological part here too, I feel that I can at least stop the coping mechanisms that keeps my situation as it is. I have decided to first deal with all my fears. If I can stop fearing (fear leads to symptoms as well) and can make life a bit easier for myself, I'll be very happy. After that, I can work on more things.

    I wish the best of luck to everyone!
     
    alkt and Mel9 like this.
  11. lansbergen

    lansbergen Senior Member

    Messages:
    2,505
    Likes:
    2,710
    @hugoalexander If you have ME and do what you are planning.you will get worse.
     
    Art Vandelay and Valentijn like this.
  12. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,552
    Europe
    alkt likes this.
  13. panckage

    panckage Senior Member

    Messages:
    627
    Likes:
    740
    Vancouver, BC
    Please don't take steroids! They won't help you one bit except make you moody and make your balls smaller (ok maybe it will help you if you like to cross your legs haha) . In order for steroids to help you build muscle you need to exercise longer/harder than you normally would. With CFS that is impossible so there is no point. Also if you take it too long your body will stop producing testosterone altogether.

    I consider myself lucky as ritalin does allow me to do limited exercise without crashing as far as I can tell. Others can't get away with this so you really need to watch how your own body (REALLY hard if your brain fog is anywhere near as bad as mine) reacts and listen to that. That being said sometimes I feel like absolute crap, hard to get off my couch but once I take ritalin I hobble myself over to my exercise bike and can end up with a decent workout... So it's how I feel after that really tells me where I'm at.

    I also had my muscles turn to mush. I couldn't pick stuff off the floor. Bending over the sink for more than 30s to do the dishes was impossible and carrying a blanket room to room was a major undertaking for me. I'm happy to say though that this turned out to be muscle deconditioning and after maybe a year(?) of rehab finally have near ordinary strength back.

    Starting strength training again is really tough when you are weak. Push-ups and squats are great if you can do them even if it is only a couple reps of each a day. But I was too weak to do these with proper form even.

    I think starting with the spine is best. Just doing isometric stuff while lying on the couch or bed. Also hanging legs off the edge of the bed and doing things like leg lifts. When sitting on a chair lean forward with proper posture so lower back muscles and gluten engage. Basically just do whatever u can. I've also found that for posture like when sitting either make it 100% correct or 100% slouch. Doing it half way will just waste our precious energy and won't be helpful for us anyways

    Well I feel like I have verbal diarrhea so I'm gonna stop now heh but please keep us informed of your progress. This disease sucks ass but at least we have each other!!
     
    Jeckylberry likes this.
  14. CantThink

    CantThink Senior Member

    Messages:
    775
    Likes:
    1,560
    England, UK
    These can all be symptoms of thyroid issues. Would probably be worth getting sex hormones, prolactin, thyroid (including free T3 and free T4) and growth hormone/IGF-1 done to check their current status.
     
  15. hugoalexander

    hugoalexander

    Messages:
    16
    Likes:
    23
    Thanks, I have seen it!


    Thanks for your response! It makes sense what you say about steroids. It's just that I want these mush (that's the word I was searching for) muscles are litterally so bad that if I pick e.g. the skin of my calf up, i pull my entire muscle up, because it's just a lot of skin and a little muscle, hanging basically. Do you recognize this? It's not everywhere in my body, for some reason my trapezius and upper back muscles have kept their normal strength. By far the msot mush muscles are my butt muscles and my calves. But next to that, the majority is just mush as well, just not as bad. Upper body is a litte better then lower body, but still weak.

    Ritalin worked okay for me as well, mostly for me mental capacity that got a little better since it takes my brainfog a little away. It doesn't really help a lot with my muscles and physical fatique though. What you said about some activities being so much, or not even being able to pick up stuff or do normal squats, I totally recognize this. I've done professional sports for quite some years with heavy fitness programs, well, I know what good and tough training is and now, when I'm pushing myself, I can do 1-2 push ups. But whenever I start doing a small exercise, my entire body (especially in the neck / abs / legs) starts shaking like it's totally overtrained and exhausted. Do you recognize any of this?

    Right now I just do some self tapping exercises and massage (to get more in touch with my body) plus some small stretching with yoga. But any pose where I have to hold something is too much since my muscles are not strong enough. Thanks again and good luck to you to, happy to hear it got a bit better with you!

    Got all of them checked quite recently, all seems fine, as well as all other similar diagnoses to ME like Lyme and Celiac disease, all turned out negative.. I wish it would turn positive, so I could deal with it better though!
     
  16. CantThink

    CantThink Senior Member

    Messages:
    775
    Likes:
    1,560
    England, UK
    Do you have a copy of your actual thyroid results? Where are the results in the ranges - top bottom middle? What's your TSH?

    I have the hanging skin issue in isolation too. Mine is very evident on upper arms and thighs. I look as if I have been super obese and lost loads of weight. You could cut the loose skin off - that's how I feel! I hate it.

    Mine stated when my thyroid went wrong. At the same time my muscles became extremely weak. I couldn't get off the floor by myself or out of the bath. Now that my thyroid levels are better (I was diagnosed with autoimmune thyroid diseas & take natural dessicated thyroid supplement), I still have the atrophy issue. I can get up better, but still little muscle and lots of skin. I'm a female and in 2009 my testosterone was lowest normal value and DHEA almost undetectable. I don't know what they are at now, but I wonder if this plays a part as isn't testosterone related to.muscle building?
     
  17. panckage

    panckage Senior Member

    Messages:
    627
    Likes:
    740
    Vancouver, BC
    This seems normal. I had a job (substitute teacher) that I was working 30 hours a week pretty fine but at home I was too weak to bend over the sink or pick things off the floor. It was so strange. I was under the assumption that after work I just ran out energy and was dead the rest of the time. While I believe there is some truth to that, the primary reason is found in the saying "Use it or lose it." If we stop using our muscles in certain ways we lose strength in those ways. OTOH in the ways we keep using our muscles they retain their strength. Maybe your back and trapezius are still strong because of the way you lift up your woman and show her a good time :D

    Even now I can only do a few body weight squats spread out over a day due to CFS... but spreading things out like this has allowed me to gain back near normal strength

    This sounds very familiar to me. I believe that this is due our helper muscles (lower back, abductor muscles(?) and all the other little muscles we have are too weak and cause this. Even though I could kind of do squats I had to go back to the lying on back and doing spine exercises. The best I found is to lie down with only the back of my head and heels touching the ground with the rest of my body being a plank with perfect posture. Now what I just described is impossible for me :p but I do the CFS version lying on back on the couch and for example, have just my head and but supporting me while lying on the couch. Also having a hobby where I can spend time on my knees (eg. gardening) really helped too as the lever arms are shorter so it is much easier to keep proper posture and thus build proper functional strength

    With ritalin I need to take 20mg to get exercise capability. OTOH I only take 10mg if I just need my brain to work a bit better. 0.1g of marijuana in a vaporizer also works ok for lighter exercise too. I'm going to stop before my verbal diarrhoea gets out of hand again :rofl:
     
  18. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,895
    Likes:
    12,702
    Sth Australia
    I guess you too then like myself, would fit the progression pattern Dr Cheney reports. His description fits my ME really well. He's the only person I know how's come up with a common progression pattern in his patients.
     

See more popular forum discussions.

Share This Page