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Is this neuropathy or some other bizarre ME thing.

Discussion in 'Peripheral Neuropathy' started by minkeygirl, Oct 10, 2013.

  1. minkeygirl

    minkeygirl Senior Member

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    A few months ago I felt what I'll describe as a band around my ribcage just under my breasteses. I had gained some weight so I thought maybe it was from that. It was there and noticeable but nothing horrible.

    About 2 weeks ago it started getting worse. When I wake it's like it was but within a few hours it feels very tight. I am not in pain. It is just there feeling like someone is pressing in.

    I also have what feels like muscle aches/spasms on my back under my shoulder blades. This also moves around some, going lower and was gone for a while but just came back.

    I'm not in pain. It is just tightness. When I'm up and moving around, it is much more tolerable.

    It really feels like my muscles are just "cramping" or something.

    Any thoughts?

    Minks

    Let me add that my feet are so cold it's painful. They feel like there is a band above my ankles and everything below that is cold.

    UPDATE: I took Tizanidine last night (muscle relaxant) and when I woke I had no tension. But now, 2 hours later my back is in spasm.

    I took some potassium to see but it did nothing. This seems to be out of nowhere. I did nothing, not really stressed.

    By the end of the day it really hurts.
  2. stridor

    stridor Senior Member

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    @minkeygirl
    I have something similar.
    Initially it showed up when I was super-sick. Pain in my back - both ribcages but much stronger on the right. It can wake me up in the night but seems to go away in the day. As I write this with my morning coffee. I am aware of it but would not classify it as pain.

    Yeah, so anyway....it went away and then returned right after I started the LCF. I am pretty sure that there is a link and I hope that it is a signal that there is some healing going on. Sorry to hear about the potassium. Going to get some today and see how it goes for me. Likely not too many taking as much B12 as me who have never supplemented this.

    This post was from a while ago....any changes? brad
  3. minkeygirl

    minkeygirl Senior Member

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    @stridor aka Brad, Well I'm glad to know it's not some freak thing going on with me. But mine never goes away, even with muscle relaxants. I think it may be complicated by some new back spasms from stress which do go away with relaxants.

    It goes all the way around my back too. When I wake the back spasms are gone but I still have that freaking band. And the Famvir I had just started exacerbated it so much I couldn't stand the pain so I had to stop it.

    I"m going to talk to a massage therapist and see if it might be myofascial trigger points or who knows what. It's not painful but so annoying.

    What is LCF?
  4. stridor

    stridor Senior Member

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    Big storm here today so I didn't get to buy the potassium. Later in the weekend.
    LCF = l-carnitine fumerate. It was the last of freddd's protocol to fall into place and I really think that it is involved. Part of me wants to believe that since I had this particular symptom when I got ill that its return is a sign that I am passing back through on the way to recovery. Another part of me knows that is called "magical thinking".

    The only thing that I can think of is potassium. Last week there were a couple of times when I started to get strange cramp/contractions going on in my toes and ankles. But not since. brad
  5. lnester7

    lnester7 Seven

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  6. minkeygirl

    minkeygirl Senior Member

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    I tried potassium and it didn't help.

    My new doc, a naturopath, is doing methylation stuff with me but we just started. I have an appt December 3 so I'll ask her about it and let you know

    Mine started out of the blue about 2 months ago. The back spasms, which are different, started about 2 weeks ago after some really stressful stuff was going on.

    A massage therapist is calling me today. He does trigger point and other things so I'll see what he can do and if I can afford him.

    Btw. I swear by www.pureformulas.com. Free fast shipping and great prices.
  7. lnester7

    lnester7 Seven

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    I have tried massage, trigger point, I am with a chiro doing some sonogram therapy and some excercises and deep tissue massage, I get relieve (doesn't go away completely) but it comes back strong before the week is over.

    I tried potassium and Magnesium. No luck so far.
  8. minkeygirl

    minkeygirl Senior Member

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    We can't assume what is causing your "band" is causing mine.

    And I'm limited to what I can do since I can't go out.

    Mine is tolerable and if I can keep my back spasms in check the its much easier to deal with.

    I had some odd places where it felt like someone was jamming a finger in my diaphragm and I started to worry. It's comforting to know I'm not the only one dealing with this.
  9. minkeygirl

    minkeygirl Senior Member

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    I spoke to a massage guy last week. He said it was myofascial trigger points. I also found out it can happen with inactivity.

    I massaged this one point over my ribcage and I thought I was going to go through the roof! So I'm on to something but I don't know about wasting $90 for one massage just to have it come back in a few days.

    Mink
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Have you been tested for multiple sclerosis? I just wondered whether it could be the 'MS hug' as described here for example.
  11. minkeygirl

    minkeygirl Senior Member

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    It is not MS hug.

    It really bothers me when people jump to such extreme conclusions. It can scare the crap out of people unnecessarily.
  12. lnester7

    lnester7 Seven

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    Bilieve it or not mine gets agrevated when I am on b12. (the chest pain in the left side)
  13. minkeygirl

    minkeygirl Senior Member

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    Wow. I take methyl b. I switched to Enzymatic Therapy from Jarrow. I'm gonna stop it and see if that helps.

    I think I started about that time too.

    Thanks.
    Last edited: Nov 25, 2013
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I wasn't trying to scare anyone or jump to any conclusions. It was just a suggestion. I was trying to help.

    It was not extreme, as a number of people are misdiagnosed with ME and then found to have MS, which is not necessarily worse than having ME.
  15. stridor

    stridor Senior Member

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    @MeSci
    I had never heard of MS Hug...learned something new today. My pain doesn't meet the description either but it does seem to indirectly support that this is some form of neuralgia, or at least that is how I am seeing it now.

    I think that our brains have a predisposition to certain pathways. Vertigo runs in my family and it is like a door that someone passes through. Once through it is hard to get back. Once found, the processing that produces vertigo are easier to find again. The same might be said for epilepsy, perhaps. (Don't mind me, just thinking out loud).

    I had this pain when I first became ill and I had it again as referred pain following my colectomy. With any gas or pressure on where the two "pipes" were joined produced a horrible pain in the same region - 10 times worse than what I get now. Mine doesn't bother me much in the day - just some tightness, the pain is reserved for night.

    It started after the carnitine was added and I am hoping that it is a sign that healing is taking place. brad
  16. minkeygirl

    minkeygirl Senior Member

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    @stridor I don't think this is myofascial pain syndrome since that is usually on one side. This is both.

    I woke this morning with a painful knot over my ribcage. I pressed it (OUCH) and it helped but boy is this just annoying

    Can you explain the neuralgia? A what can be done? Have you tried Acupuncture?

    @MeSci there are a boatload of other things this could be so jumping to MS and ignoring everything else is what bothered me.
    Last edited: Nov 26, 2013
  17. stridor

    stridor Senior Member

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    @minkeygirl
    Yes, that's a good point. Mine is bilateral as well though 2-3 times worse on the right side. I have neurogenic itching and it is unilateral. hmmmm.....
    Never tried acupuncture. The first time I had it was when I slipped into ME. Quite frankly, the pain was the least of my worries at the time. Besides, it is hard to get quality worrying in when one is fogged-in :)
    The second time, and at times it pushed my ability to tolerate, was after the colon was removed. I correctly And, I did.
    This time the symptoms started about 12 days ago and thus far have not superseded my ability to cope. I am hoping that it will be self-limited. My brain-fog has decreased and I want to think of this as part of my road to recovery. Viewed in that light, it is a lot easier to tolerate.
    Now....if I am still whining about this by spring then I may be ready for acupuncture. There is a lady near here and I heard that she is good at fixing guts with this so - kill two birds with one stone???? brad
  18. minkeygirl

    minkeygirl Senior Member

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    What I just noticed is that if I pinch my skin over my ribcage it just hurts like hell. So now that is curious. There is another spot, on both sides that feels like someone is jamming a pointy finger into me.

    Acupuncture is really expensive. At say $60 a pop twice a week for weeks? I can't afford it. There are some good places around her but then there is the issue of getting there on top of everything else.

    I already am at my limit of coping. There is something about a constant dull ache that just eats away at your sanity.

    If I had some pain meds I'd be eating them there is no doubt.

    I just wish it was late enough for me to just go to sleep.
  19. stridor

    stridor Senior Member

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    @minkeygirl I know that I replied to you already but if someone reads this thread in the future I want it on record that I started a calcium product around the time that this pain returned and that I am going to withdraw it and see if there is an improvement. I will hold on the potassium idea so that I don't cloud the issue with 2 variables.

    Like I hinted before, I think that this is an electrolyte problem of some kind. Ca++, K+ ....something like that. I'll get a level done as well and see if I can get - what is it a RBC potassium level that's supposed to be more accurate? brad
  20. minkeygirl

    minkeygirl Senior Member

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    I'm stopping my calcium today in light of what you said and oxymatrine since Famvir really aggravated this problem.

    I have some electrolyte stuff, NUUN I got on ebay (amazon has it too) and it didn't seem to help much, but I only drank it one day. As I'm medically ignorant, not sure what you mean by CA++ or K+

    Just took a muscle relaxant. Cant have another day like yesterday. Horrible painful but not ER painful. I also don't get why laying on my back aggravates it.

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