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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Strange issues, CFS related?

Discussion in 'General ME/CFS Discussion' started by Strawberry, Sep 26, 2014.

  1. Strawberry

    Strawberry Senior Member

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    I have had mild CFS for 20+ years (sore throat and fatigue, but manageable) until the last 3 where PEM and other things came up. Some other issues that I don't know if they are common with ME/CFS or not have popped up, so I thought I would see if there are others here that experience this?

    First one that has cropped up in the last 3 years, Fibrocystic breast disease. When I was young I did have one cyst that eventually went away, but this is different. It changes on almost a daily basis. One month it might be in the right breast, the next month it will be in the left. Then it will be in both. And then in 3 days it will be gone. Sometimes it feels like there are rocks in there! It definitely fluctuates with hormones, but is always different month to month.

    Next issue that has cropped up over the last year, is I get squeezed in the middle of the night from just below my boobs down into my thighs. I tell people I have a boa constrictor that sleeps in my bed. !!! It will squeeze me hard enough to wake me up, then subside after maybe 5 seconds, then 10 minutes or so later after I fall asleep, it does it again. When I tried to research this one, all I could find was the MS hug, which sounds like it is in the rib cage only, and lasts for a while before it subsides. So completely different? This seems to only happen in the summer when I have a difficult time keeping the bedroom cool. Last summer it nearly took my breath away, while this summer it has been mild.

    Third issue has been gone for a bit, but started about 18 months ago, and stopped about a year ago, it overlapped my boa constrictor. It felt like a buzzing ball of energy that actually travels around my body. I feel insane even talking about this one. It usually was about tennis ball sized, and traveled everywhere. The first time it happened it just sat near my heart and sent me to ER, but it has traveled around through my legs, my arms, my torso, and even my head. The time it was in my head I actually heard it as if someone took my electric toothbrush and put the handle to my skull. Also, by traveling, I don't mean today it is here, tomorrow it is there. I mean it literally moves around my body, like a child pushing a toy car around. But it does like to stop in one spot on occasion. It's favorite stopping part was my spine at my waist. It caused very severe back pain that I almost couldn't walk/sit with for a few months after the buzzing ball subsided. This also was a summertime issue, although I haven't had it this year. It has been gone long enough my back pain finally went away a couple of months ago.

    Both the boa constrictor and the buzzing ball only happened in the early morning hours of sleep. Not in the daytime.

    Anyone have any of these?

    Now you know why my doctor has thrown in the towel. I feel like someone has a voodoo doll of me.
     
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  2. justy

    justy Donate Advocate Demonstrate

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    Have you had Lyme and co infection testing? I have had many cysts in breasts and intense inner vibrations in my body
     
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  3. Tammy

    Tammy Senior Member

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    "I feel like someone has a voodoo doll of me" This is a good analogy of how I felt especially during the early years. I had some very strange and bizarre neurological symptoms. I had the squeezing sensation around my head, wrists and ankles and sometimes spine. It felt like someone was taking some kind of tool and torqueing the heck out of those areas. The squeezing around my head felt mild compared to the other areas. The sensation could be so intense at times that it felt like if I looked down at my feet or hands they would be facing the opposite direction. Also...........what was weird is that it felt like I had a ton of bricks sitting on the top of my feet..........making it hard to even lift my feet. I have also had that buzzing type of sensation but only felt it in the central part of my brain..................................I don't want to tell you that everything you experience is a result of CFS but I can only tell you that the bizarre symptoms I've had (more than I've mentioned here) are ruled down to the effects that CFS can bring on .................. this after ruling out other things. Just make sure a Dr. has ruled out other possibilities ie. MS, lymes, etc.......... I have been to at least 6 different neurologists:bang-head: I still have a myriad of strange symptoms but NOTHING like those bizarre ones.......Thank God.
     
  4. Strawberry

    Strawberry Senior Member

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    @justy I haven't been tested for Lyme. Someone told me years ago that they don't test for Lyme as we don't have ticks in Seattle. I guess Seattlites aren't supposed to travel! Are those symptoms typical with Lyme?

    @Tammy Nice to hear that there is someone else in my voodoo boat! I did get the MRI done on my head, but was not able to get the MRI on my spine before my 1st neurologist quit. He told me I definitely needed to be seeing a neurologist so he referred me on to someone else. The second neurologist just talked about herself for an hour and then said I was fine and that I didn't need a neurologist unless I wanted to come back to try her $300 per hour acupuncture. But apparently the holes in my brain aren't in the typical area for MS, so it is considered unlikely even without seeing spine. Did they say anything specific (like myelin damage in certain areas) that would cause cause it to feel like your feet were twisted backwards?
     
  5. Valentijn

    Valentijn Senior Member

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    There's a good Lyme-friendly doc up on 65th: http://www.evergreencenter.net/our-practitioners/dr-bobbi-lutack/ . She's a Naturopathic Doctor, so can order tests and prescribe most medications just like an MD can.

    From what I hear, she's VERY good with monitoring for side effects and keeping in contact via brief emails.
     
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  6. justy

    justy Donate Advocate Demonstrate

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  7. Valentijn

    Valentijn Senior Member

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    Yeah, and since Western Blot looks for one out of a dozen or so strains of Lyme, it could very well be missing whatever version the WA ticks are carrying.
     
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  8. Tammy

    Tammy Senior Member

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    @Tammy Nice to hear that there is someone else in my voodoo boat! I did get the MRI done on my head, but was not able to get the MRI on my spine before my 1st neurologist quit. He told me I definitely needed to be seeing a neurologist so he referred me on to someone else. The second neurologist just talked about herself for an hour and then said I was fine and that I didn't need a neurologist unless I wanted to come back to try her $300 per hour acupuncture. But apparently the holes in my brain aren't in the typical area for MS, so it is considered unlikely even without seeing spine. Did they say anything specific (like myelin damage in certain areas) that would cause cause it to feel like your feet were twisted backwards?[/quote]

    @Strawberry
    I had gone to a very specialized immunologist who did some blood tests........most I wasn't familiar with at all........neither was my primary doctor...........anyway......one of the tests that came back showed myelin antibodies.....so I'm assuming my myelin was getting attacked or damaged? (For lack of a better word). I wish that I still had all those blood test results.....but Doctor is not practicing anymore and all my medical reports gone in a flood. This was back in 1997-1998. Nothing ever showed abnormal in all the MRI's I've had done.....brain and spine.
     
    Last edited: Sep 27, 2014
  9. Strawberry

    Strawberry Senior Member

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    @justy @Valentijn I need to go to my (MD) doctor for a followup anyway, I will ask him about Lyme. Is there a lab that I should request to be used? Isn't one much better than the other? For now I will stick with my ND that I have been seeing, otherwise it gets too confusing for me. But I will keep in mind Dr Lutack if I can't get any local help.

    @Tammy that must be frustrating losing all those documents! I am just in these last few months starting to keep my own records. Blood work results are too confusing for me, but I have learned to keep them in my car for easy access for any doctors use.
     
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  10. Cheesus

    Cheesus Senior Member

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    I have had some exceedingly odd neurological symptoms that kind of match your description. I've had the feeling of a pressure in my face that is constantly shifting and moving (as in constantly in motion, not sometimes in one place and sometimes in another) but seems to be centred around the bridge of my nose. Sometimes it will travel down into my teeth and throughout other areas of my head.

    In the past when it was really severe I'd be wearing my eye mask it would was physically moving about on my face. I had so much pressure in my teeth they were making loud clicks as they shifted against each other. All the skin on my scalp was constantly shifting around. My earbuds were being pushed out of my ears.

    One time I thought my ear was wiggling and I put my hand up to it but it was actually my hair moving around and brushing against my ear because my scalp was shifting so much. Whilst it is still ever present, the pressure is much less now but for a while it was like my face was trying to change shape. At one point the pressure was so intenseI thought my nose was going to break.

    The shifting muscles also caused my jaw to swing about. My jaw would drop and move from side to side and it felt like I had a piece of elastic stretched across my face that would then roll down over the top of my teeth, and as it rolled down over them the pressure in my jaw would dissipate and it would swing back into place, only to be repeated a few seconds later.

    I also had shifting muscles and pressure in the rest of my body. My head was rocking backwards and forwards due to a pumping sensation in my spine. When I was sitting upright I could feel my head being pulled as if I had a string attached to my nose. I could resist it, but if I went with it and slowly rotated my head the gentle tugging sensation would build then suddenly subside as if something had been released.

    I also have/had the weird travelling thing around my body. Particularly when I am lying on my front I feel like my flesh is undulating. Sometimes it is like part of my body is expanding then contracting in a mexican-wave like motion moving from my arms (if I am lying face down with them above my head) down my body and into my legs. I get a really huge pressure in one of my thumbnails as well!!

    I am really just scratching the surface with these symptoms and I am sure there are many that have been forgotten. I could write a book on them. It has been so, so, so weird. I saw a neurologist and he told me it was happening because I was thinking about it. Yeah... alright, doc. Thanks for your esteemed opinion. I hope you don't mind if I think you're full of sh*t and that you have no idea what your'e talking about. An immunologist I saw said he has seem similar things in some of his other ME patients (he specialises in ME) and that the common denominator was a history of drug abuse. Does this apply to you?

    As I mentioned above, these things have now either hugely subsided or gone altogether. It's been probably about 8 months now in total. Having said that, they are still here enough that if any healthy person suddenly got what I have now they would immediately be running to the doctors. I suspect that if they continue to diminish at their current rate it would still be another year before it was gone altogether. The things that has really helped it for me is meditation, good pacing and good sleep.

    So, yes I can sympathise with you!!
     
  11. Valentijn

    Valentijn Senior Member

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    @Strawberry - Infectolab has a good one (LTT: Lymphocyte Transformaion Test) but it's in Germany. I think there's a US lab which sends blood there now for testing, if requested.

    Other tests tend to have pretty high rates of false negative results - that is, they'll say someone isn't infected when serology shows that they are infected.

    The C6 Peptide Elisa is somewhat new, and only has a false negative rate of 40%. Whereas Western Blot can range from 20-80% false negative rate.
     
  12. Strawberry

    Strawberry Senior Member

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    Not unless Zyrtec is on the list. :) But that is extremely interesting. Do you know if he meant current drug (ab) users, or people with a past history of drug usage? I read once somewhere that a study found marijuana use in teen years could cause sleep issues in later adult life. And... Um... I can't deny that one... But nowadays, even current US Presidents can't deny that one! ;)

    Sorry to hear you have had such wacky symptoms also. Mine are also almost entirely gone this year. But last year when I told my doctor, I thought he might commit me.....

    @Valentijn So should I ask for C6 Peptide Elisa? Or to have the blood sent to the specific lab?
     
  13. Valentijn

    Valentijn Senior Member

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    Dunno ... whatever works out for you and your doc :p
     
  14. Strawberry

    Strawberry Senior Member

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    Okay. And since he doesn't really seem to want to treat me, I will do which ever he wants. :D
     
  15. Cheesus

    Cheesus Senior Member

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    He meant a past history. Specifically he was referring to my cannabis usage. However, I was a really heavy user and very much addicted for years. If you just had the odd joint here or there I doubt it would be much of an issue. Either way he said it was treatable, though I've not had the appointment yet to find out what that treatment is.
     
  16. Strawberry

    Strawberry Senior Member

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    It will be interesting to hear. I hadn't had it for 30 plus years, but everyone has been trying to get me back on it for medical. It doesn't make sense to me, as I know many "life long stoners" with no problems, but worth a shot. Look what was posted yesterday: http://www.sciencedaily.com/releases/2014/09/140930113117.htm
     
  17. perchance dreamer

    perchance dreamer Senior Member

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    @Strawberry, those are some really odd symptoms you describe. When you had the buzzing ball of energy and boa constrictor sensations, you said they occurred only in the early morning hours of sleep. Were you able to move if you wanted to when this was happening?

    I ask because I used to have sleep paralysis, accompanied by a feeling of intense tingling that moved from the base of my spine to the top of my head. Then I would hallucinate I was out of my body. Hallucinations are common with sleep paralysis although I certainly felt awake. I couldn't move, though.

    However, that doesn't sound like what you're describing because you were left with pain after these episodes. That's really baffling although I have read of people with CFS and fibro feeling energy zaps.

    On the boob front (I didn't think I'd be saying that when I woke up this morning!), I have cystic breasts too. What really helps me is lymphatic massage. It helps greatly with the pain and twinges.

    My nurse practitioner once recommended a supplement called DIM for cystic breasts. I've also seen that some women take Vitex.

    Another thought for the breasts and chest area is Feldenkrais work.

    Good luck!
     
  18. Strawberry

    Strawberry Senior Member

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    @perchance dreamer I was definitely awake (or awakened by it) and able to move. I would figit and move around to try to get it to stop. Short story time, my ex husband used to get sleep paralysis. He swore up and down that he was being kidnapped by aliens. One time I woke him up when I knew he was having alien dreams, and got him to understand it was sleep paralysis. So strange what the brain will do!

    And back at you at the boob front, (LOL!) My ND told me of something that would also help, but I didn't take it as I wanted to focus on my sore throat and fatigue first. Something that I was taking did help though. So I may never try this other thing. My list is at home, so I don't know what it is called right now.....
     

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