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Weird symptoms by Sandy Johnson

Discussion in 'General Symptoms' started by Cort, Aug 31, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Of these I've experienced panic attacks/vertigo, nausea, shortness of breath, verbal problems and some light sensitivity. I would throw everything with MCS, hot plasticky feeling skin, the orthostatic stuff, painful spots under pressure all over my body, mood changes, and ?????? (but then I only have a moderate case ;)). I like her husband - he has a nice way about him.

    Comments on her blog indicate quite a few people with itching problems! Not what I had associated with ME/CFS at all.

    ME/CFS – Weird Symptoms We Experience That Are Not Widely Focused On
    August 25, 2009 by Sandy Robinson


    http://www.fightingfatigue.org/?p=7602

     
  2. Angel

    Angel

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    an island in Florida
    itching

    My Doc has told me that itching is usually the first sign of toxicity, probably of the liver. When I itch, especially in the ankles, I try to drink more water, and use more probiotics and enzymes.
     
  3. Lisa

    Lisa Senior Member

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    I have major itches when trying to take a nap. Not too bad when going to bed at night, but this itching has prevented me from having more than 2-3 naps a year up till recently. They haven't gone away when trying to nap, but now I know how to focus myself past them and still manage to get to sleep. Actually managing at least 2-3 naps a week now. :D

    Have most of these other listed symptoms. Hot flashes are bizarre, I'm only 32! I do like them in the winter time though. :D

    Ringing ears (always), light sensitivity (not as bad as described), shortness of breath (often), nausea (couple times a week), speaking difficulties (often), panic attacks (sometimes), rash - never thank goodness.

    Are these supposed to be uncommon things or just odd? Maybe it is just me who is odd... :D

    Lisa :)
     
  4. Victoria

    Victoria Senior Member

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    Melbourne, Australia
    Severe rashes/itching?

    I have the fine red bumps (like a pinhead rash on the upper backs of my arms). I believe it's something to do with what I eat. The more grain/dairy free I follow, the less fine red spots. It's not allergy. I would call it food sensitivity. I'm sure it's something I eat. The more salmon oil capsules I take, the less red spots, so I suspect there some omega 3 issues that help me. (Nurses have commented on my soft, fine, relatively wrinkle free skin) I also take Vitamin E capsules.

    When I took my first pill of Tramal (for pain) some years ago, I woke up in the middle of the night with severe itching all over. I turned the bedside light on & discovered I was covered from head to toe with thousands of red spots (rash). I tried it again the next night & had a lesser reaction. I have never taken it again & it is now on my drug allergy list I keep in my purse.

    I also had a severe reaction to a new deodorant once (it was hyperallergenic too!). Within 24 hours I had what looked like a thick raised red burn mark under each arm. Within a couple of days it had turned into a scabby, bleeding mess. The worst reaction I've ever experienced. I put some vitamin E cream (with a couple of drops of lavender oil mixed into it) under my arms & it healed every so well (with no scar).

    Interesting that her description on her blog sounds very, very similar.

    Speaking difficulties?

    I slur my words when I eat white sliced supermarket bread (& a few other things). It sounds like I'm drunk. And I sway & almost always fall asleep standing up. The effect lasts about 4 hours.
    Apart from this sensitivity, I have found that in the past, I was prone to having difficulty getting words out also. It used to drive me up the wall when people would finish my sentences for me.

    Shortness of breath (& chest pain),

    On 24th Aug, I ended up in the local emergency dept (after a visit to the local Dr re severe chest pain walking to work). An ECG was abnormal & angina spray relieved the pain, so if was off to the hospital re suspect heart issues? I have a stress echo test next Wednesday 9th & a follow up with another Cardiologist (this all happened back on Jan 28th this year also).

    I had a stress echocardiagram in 2000 & 2002 because of angina-like chest pain walking to work. Nothing was found & the cardiologist commented at that time, that I had excellent heart health (I used to power walk 10 hours a week back in those pre FM days).

    Wonder what they'll find this time (if anything).

    I DO have heart arrythmia. Could be a symptom. Heart arrythmia is also a side effect of Amitryptiline (which I take a low dose for sleep). But as I have been taking this drug for 3 years, would this side effect suddenly start happening this year?

    My theory, as has happened in the past, is, my body does not like synthetic drugs of any kind. My theory is, that my body is telling me it's had enough of this drug & doesn't want it any more. Each Christmas (while on annual leave from work for 2 weeks) I do a drug fast to give my body a rest. Each time, I can't sleep at all for a couple of days & then wake up hourly for a couple of days, then 2 hourly & so on. I gradually start to decline if I stay drug free for more than about 2 months. By the end of that 2 months I'm starting to feel exhausted & make mistakes at work.

    So, for a person who doesn't believe in drugs, I am forced to go back onto this drug each year. I wonder if I could get around this drug merry-go-round if I didn't have to work. I wonder if I could get rid of all drugs completely. (Valerian & hops give me nightmares & some of the over-the-counter sleep medications don't seem to do anything at all.)

    I shall never know until I retire, I suppose.

    Victoria

    PS I wear sunglasses all the time too - I thought it was always because wearing contact lenses makes me super sensitive to light. I have low watt lamps on a home at night - don't like bright overhead lights at all, but my office lights seem okay -they're new energy efficient lights which seem to be slightly softer than the old fashioned harsh white fluorescent strip lights.
     
  5. Angel

    Angel

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    an island in Florida
    itching

    Lisa:

    On occasion I go through the sleep time itching. That's when I go to the grocery store and buy laundry detergent and softner with no scents or fragrances or for sensitive skin. My father had this sensitivity also.

    Then for a couple of months I concentrate on having my clothes and sheets free from additives. I cannot sleep in 100% cotton sheets as they make my legs burn and my whole body too hot.

    I sleep in two beds every night... No kidding! I start out in the master bedroom. When I wake up, I switch to the other bedroom. It ensures that I am sleeping inbetween cool sheets and I am able to get right back to sleep the majority of the time.

    It might be a good thing I am not married at the time or my hubby would be chasing me down in the middle of the night. Some nights he would really get his exercise trying to find me.

    So, for you itchy sleepers, I would encourage you to be sure you have free and sensitive laundry degergent and softner.

    Also, when this happens, I will use only white vinegar for a period of time to rinse the clothes to help get residue out of the sheets and clothing. I will also add it to the wash cycle. This all stops the itching quite quickly.
     
  6. Angel

    Angel

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    an island in Florida
    Bounce and ithes

    Bounce sheets and fabric softner sheets can cause itching because they are made of sharp shreads of stuff pressed together. I actually cannot remember what the substance is that fabric sheets are made of, but it itches and can actually cause cuts in your skin on your cheeks and body.

    Years ago my girlfriends baby had bright red cheeks and knees. She owned a maternity and baby clothing store. I had just read an article warning new mothers about "Bounce" fabric sheets and how they cut the tender skin of babies.

    I told her about this and she switched to a liquid softner. Within two weeks her babies cheeks and knees were free from bumps and redness.

    When ever a mother and baby would come into the store and the baby had bumps and red cheeks or knees, she would tell them about the Bounce cutting factor.

    The Moms would make the laundry switch and the next time they came into the store they would show her, "no more red cheeks or knees".

    Maybe all of you itchy sleepers could try liquid softner or white vinegar for a week and see if it calms your body. Then make the switch to LDN because it is this very kind of over sensitivity of your nerves that LDN helps.
     
  7. Angel

    Angel

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    an island in Florida
    sleep and drugs

    Victoria:

    As you share my grand daughters name I am fond of you already! Isn't getting sleep a trial sometimes?

    I agree with you that my body doesn't like synthetic drugs. My Doctor in Florida recognizes that and has put me on several compounded prescriptions that are either natural, or at least free of fillers.

    For sleep. I have taken a bit of melatonin for years which helps to promote sleep. In the evening I lower the lights to help the production of melatonin for sleep.

    I take GABA to help me sleep better. I take Tryptophan at night time to help with the sleep and it is also phenomenal at combating depression. Try taking your calcium and magnesium in the evening for better sleep.

    My Doctor tested my cortisol levels and found they were too high at night. In fact out of the 4 times a day that they check the levels, I think they may have been highest at midnight. He said, "Angel, with your high levels, I don't know how you ever sleep." I said, "I'm not!"

    Initially he prescribed 1000 mg of phosphatidylserine to be taken at bedtime. It drops the levels so you can sleep. After a month he increased it to 2000mg for a period of time. It definitely increased my sleep.

    Plus, I noticed I was waking up several hours earlier in the morning, which was good, and my brain was functioning so much better. The cognitive really improved.

    I am not taking any for the last several months because initially it was being covered by my insurance. then in March Medicare declared they wouldn't cover any compounded prescriptions, we had to use the synthetic stuff.

    Because of the cost of all of the prescriptions that were compounded, I am no longer able to take the phosphatidylserine for sleep, and I am sure noticing the difference. I am tired, exhausted, more headaches, less cognitive and slowly going downhill physically.

    It is frustrating when the challenges of my financial budget keep me from the level of health that I know I can have.

    Anyway, try 500 mg of phosphatidylserine at bedtime, along with the GABA,Tryptophan,calcium and magnesium and you may find that you are sleeping better than with the synthetic drugs that you need an itch break from.
     
  8. Victoria

    Victoria Senior Member

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    Melbourne, Australia
    Hi Angel,

    I have found taking my complete calcium tablets (calcium/magnesium/vit D/horsetail etc)at night keeps me awake, so am forced to take them (on an empty stomach) first thing in the morning.

    Every naturapath/health food shop/chemist has told me to take them at night because they give a better night's sleep.

    Not for me I'm afraid. I have a perculiar body reaction to so many things, I give up.

    If I eat tomatoes at night, they also keep me awake (like caffiene).

    Instead of concentrating on the things I can't take, I focus on the things that I can take/eat (well, as far as finances allow).

    I have tried all sorts of supplements/foods/treatments over the years (to the detriment of my credit cards).

    The only other supplement I would like to try is Coenzyme Q10, But a couple of weeks supply seems quite expensive to me. It's on the backburner (to consider in the future).

    I've now decided not to try any new supplements,drugs, doctors, specialists, tests & so on.

    I am now whittling everything in life down to what I know works & is financially affordable.

    (that includes washing powder & cleaning products & any other chemical that I come in contact with).

    Besides I've got to pay off that debt one day.

    In Nov 2006, the Endocrinologist I was referred to tested just about all the basic stuff (& fortunately bulk billed so I didn't pay).

    When I queried a couple of results (which were outside normal), she "bit my head off" & retorted that she hadn't done those tests for "xyz" reason. One thing she did find was I was very low on vitamin D - so I take 1000IU daily & my last test this year was good.

    As far as I'm concerned, if any doctor/specialist "bites my head off" for any reason & isn't willing to hear my opinion or answer my questions, they get dumped very smartly.

    I believe that as I'm paying (sometimes exhorbitant fees) I have every right to ask any question I like. If a medical practitioner doesn't respect me as a patient, then they cannot expect me to come again (or respect them as a doctor).

    As I suppose most people on this forum know, vitamin D deficiency causes muscle pain &
    other symptoms very similar to FM, so I guess if you have chronic pain, this is certainly a test worth exploring.

    I guess you (like me) finds that eventually, it all boils down to money.

    Victoria
     
  9. Zona

    Zona

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    most of the above

    Don't we all have weird symptoms? As a matter of fact that's how I have tagged this illness, the "wierd symptoms disease".

    I've had the anxiety thing, the tremblin' and shakin' thing, the shortness of breath thing, the light sensitive thing (at times). I have a lot of problems with the orthostatic stuff, pain when clothes are close to body especailly at waist and neck thing.

    The costochondritis thing has really been driving me nuts for years but has become real chronic and more painful for the last several years. A big problem lately---

    I've had rapid heart rate for no reason thing and skipping heart (PVC's), one time for three straight days! That scared the bedathers out of me, not to mention made getting to sleep a difficult thing.

    For me the weirdest symptoms are the "too-muchness thing". You know the nervous system on total tilt, sensory overload/overwhelmed thing where everything is overly buzzy, jumpy, stimulated, won't settle down thing? It's like all most nerve endings along with my brain are misfiring and jumbled. Lights are too bright, noise too loud and too many, skin hyperreactive even to breeze etc.

    I get lots of neurological stuff, nerve pain, tingling, burning sensation etc. Today I had tingling around my mouth and then sharp twinging nerve pain in same area. Fun and games...

    There's more but hey, I can't list them all at the moment. Four hours sleep doesn't cut it. (two months of smoke here which thankfully finally cleared today! Hurray!)

    Zona
     
  10. Lucie

    Lucie

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    A little glockenspiel music, anyone?

    I, myself, am astounded at how strange some of my symptoms are.

    When I scratch the left side of my neck, it makes a glockenspiel sound in my left ear, as if I'm playing an instrument - one sound for each stroke. This is usually at night.

    Three nights ago I had something very strange happen for the first time. It felt like someone had tapped me on the center part of the top of my head. Then from there down to the bottom of my ears there was a quivery movement. I could feel my ears actually move - just once like a shock wave.

    Another strange thing is when I go to get something I go too far. For example if I intend to get something behind the first cabinet door, I will start to open the door just to the right of it. Or if I want to pick up something in the middle of the dresser I will reach for it at the far left end of the dresser.

    Something that I experienced before giving up sugar was that if I ate store bought cookies, I would get argumentative and verbally aggressive. It would not happen with home made cookies.

    Also, sometimes when I'm talking I will rev up emotionally (either positively or negatively) and then my speech will rev and it is very hard for me to stop talking. Sometimes with people I know, I will just say "I'm going to stop" in order to make myself stop. On the rare occasion I'm out with people, I am very guarded lest this should happen.

    Sometimes I will use a French word without intending to. When I'm very tired I will fall into broken French. It is all I can think of. French is not my first language, and I never did this when I was fluent in French (I no longer am fluent in French). It is embarrassing as it makes me sound pretentious. Then again, often I can't think of a simple English word like "dog" or "kitchen."

    And sometimes I can barely talk at all. The throat allows only a raspy whisper or the mind offers only a blank slate.

    Other things:
    When I use my right hand, my right foot will hurt.

    I have looked at people I know and not had any idea who they were.

    My husband says sometimes I will stop talking and moving and stare for a few minutes as if I were having a seizure or something.

    And of course the rashes - oh yeah, the burning warm-to-the-touch rash that usually accompanies stress and sore throat.

    When I read back over these, it all sounds kind of scary. Fortunately, I can often see the humorous side of it all.

    Lucie
     
  11. Sing

    Sing Senior Member

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    New England
    French words

    Yes, I come out with French words too, although I didn't learn it (somewhat) until high school. I do like French, feel good in French. Maybe my brain links to it when I am in a certain emotional state which I had with French. Are the limbic and language areas interconnected?

    I am too tired to create a list of my weird symptoms, but do have some of the above, then other ones too. This will help me take note.

    Thanks, everyone, I always feel such a context of acceptance, understanding, caring and good humor here!

    Cecelia
     
  12. shrewsbury

    shrewsbury member

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    Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS

    Hi - I don't know if you're all familiar with the Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS

    I like the longer version, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:Clinical Working Case Definition,Diagnostic and Treatment Protocols, better as it has an easy to read chart on pg 5 , co-morbid entities on page 7 and a fuller discussion of symptoms starting on page 8.

    I find the list of "weird symptoms" that are part of the profile of this disease quite good. (although the brain has to be in working-mode to get through the amount of material)

    I think almost everything discussed is listed here – except I’m not sure about itchiness and left hand working, left foot not, and..............okay - we do have some really weird symptoms here.

    – so no Lisa, it’s not just you .
    - Lucie – it even has perception disturbances and another category – motor skills disruptions or something (sorry, that’s not it and too tired to look) to explain your “out-of-synchedness”
    . - for you multilinguals - word retrieval difficulties is included
    - and of course sleep dysfunction
    - and brain-deadedness, although there are of course better scientific terms for it

    For me it is a good read just for the confirmation - the "oh, so I'm not the only one with such a weird constellation of symptoms".

    But, if you have something not listed here, I would go to your doctor with it. Best piece of advice I've received re this disease is that we tend to attribute everything to it, when, in fact, we still may get other problems outside of ME that need to be dealt with appropriately.

    islandfinn:)

    ETA Levi - scabies - ewwww
     
  13. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    best piece of advice

    I agree Islandfinn.
    I've had eye problems focusing, lights too bright, floaters, unidentified gunkiness so fifteen years or so into my illness, when I began having trouble reading street signs, I just thought it was more of the same that had no resolve. So I was AMAZED, ASTONISHED, ECSTATIC when I first put on my eye glasses and things far away came into sharp focus! Voila! Just like that. Who knew???
     
  14. Frickly

    Frickly Senior Member

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    Texas
    Hives

    I used to get hives before I started antibiotics for my bacterial infection. Interestingly, when I first started antibiotics the hives got really bad. After a few weeks I quit getting them but still have itchy skin and rashes. I think my hives were a reaction to the bacteria dying off and being released into my blood stream.
     
  15. jenbooks

    jenbooks Guest

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    Yuck on scabies. And I just read that bedbugs are so bad in Ohio that they're asking for approval of a banned toxic pesticide that kills 100% because they're overwhelmed. I know bedbugs are bad in NY too. I kind of worried after our recent vacation and staying in various hotels. Uggg on bedbugs, mites, ticks, and all those little bloodsuckers.
     
  16. srmny

    srmny

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    Symptoms

    Hi Lucie,

    I know some of your symptoms very well.

    I have a few embarrassing memories of not recognizing someone I knew well. It generally happened to me when someone was out of place. The vet I had seen the day before in his office became a total stranger in the grocery store across the street. And when this happened it took many verbal cues before I caught up. I got into a guessing game with the vet and decided he must be someone I had worked with years before. A surprise birthday party at a restaurant - I did not recognize my own mother until she spoke to me - "It's Mom."

    My husband and son used to think it funny when they replayed the movie rental from the night before and I watched it in full with no recall.

    Sometimes I would open my mouth and no words came out. I was putting the words together in my head but unable to figure out how to make a sound. That was frightening. I also lost time. I remember once losing 2 hours. I called my CFS doctor because I was going to miss her appointment and I just kept repeating that 2 hours had "disappeared." I couldn't begin to understand what had happened. Still don't.

    Not long ago I had a complete work up at a local hospital because my pupils were different sizes. Nothing showed up but my CFS doctor had told me that although she suspected it was CFS, I still had to check it out. The eye doctor sent me to the ER. Since that time it has happened a couple of times a month and I just ignore it.

    I have worn my hair pulled back in a pony tail for many years because I can't tolerate any wisps of hair brushing against my face. Sometimes it feels like something is crawling on my face and if I am in the wind it is painful like a whip.

    I run into walls and knock things over when I mean to pick them up. We use a lot of plastic glassware at my house. Sometimes when I pick something up I fling it across the room. It is some kind of strange reflex.

    When riding in a car at the speed limit I am generally convinced we are way over the speed limit. At 30 mph I begin to check the speedometer. Going around the block can feel like I am doing a lap at a racetrack.

    Before I stopped driving I was always lost in my own neighborhood. We lived in a lake community and I used to circle that lake endlessly. At my worst - I looked at my little boy and asked him the name of the lake. He knew - our town was named after it. At 5 years old he became my navigator.

    My IQ has dropped 40 points since I got CFS. But my brain has been healing with time and I am able to read and write again. My heart seems to be where the virus is hiding now. If anyone reading this has a similar CFS story I would like to know what is next. My course of illness is endocrine, brain, and now heart.
     
  17. Sing

    Sing Senior Member

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    Reply to Susan

    Dear Susan,

    I really appreciate your writing about some of the neurological symptoms you've experienced. I've had those kinds of symptoms and events too! You asked, What is next? I think I understand just what you mean with that question!

    But I don't know, naturally. It seems to me that the way this goes-- especially when we work to adapt intelligently, or as well as we can--that some things get better and others get worse/or new symptoms arise, so the picture changes. It isn't all downhill because some new doors do open, as well.

    Cecelia
     
  18. gracenote

    gracenote All shall be well . . .

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    wisps of hair

    This falls under the nuisance category but . . .

    I kept feeling like I had to clean out my right nostril. It kept feeling like something was there, but no cleaning would help. This kept on for weeks and weeks. Finally, I'm not sure how I came to this revelation, I realized that there were nasal hairs that were touching each other (just touching!!!) and giving me the sensation I was having. Clipping these hairs gave me relief for many months. When it comes back (grows back) it takes me awhile to remember what is causing that annoying sensation, then I clip the hairs again and I'm good to go.

    I don't know where else in the world I would tell this tale of woe, but there you have it. Wisps of nose hair can drive me nuts!
     
  19. _Kim_

    _Kim_ Guest

    Gracenote, you may have just relieved me of my most annoying, private nosepicking habit. It drives me crazy. I can swear there is something up there. I never considered that it might be my own tiny hairs. I'm heading over the bathroom to do some nose-scaping! Pronto!!
     
  20. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    wisps of nose hair

    I'm laughing so hard right now. I felt very reticent, shy and embarrassed about sharing that little bit of info. Blush. But if it helps you, Kim, "if it helps just one person it will all have been worthwhile." Or so they say. Let me know how it goes!
     

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