1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

Pain with Extended Pressure of Any Kind...Normal? Bedsores?

Discussion in 'Pain and Inflammation' started by Cali, Aug 3, 2011.

  1. Cali

    Cali

    Messages:
    6
    Likes:
    0
    Hi,

    I would love to properly introduce myself before posting a question, but just can't right now and I would really love some insight. It's taxing to type right now, but I'm desperate.

    I have been bed bound except for shuffling to the bathroom for almost four months now. Have been having burning/abraded type pain where I'm in contact with the surface I'm lying on. Started in the tops of my thighs really early on because I was overusing the muscles before I knew what was wrong with me, and I hadn't yet connected that I couldn't tolerate a laptop or food tray on my lap (so I was just bearing with the horrible pain without realizing what I was doing was causing it). At my worst, I couldn't even set extremely light things on my lap for a second - the pain was too bad. Then more recently one hip I lie on began to get the same sensation (along with a patch of little red dots - I was staying of this hip for a long time once that happened), then the other started up too, and now my butt as well. If I can stay off them, the pain fades down, but as soon as I lie on them for too long, it starts creeping up again and can get quite bad. Have been trying to shift position as much as possible, but I'm now getting to the point where there just isn't time for one body part to stop hurting before I have to cycle around and lie on it again. The pain is definitely related to pressure/weight on the body part, and seems to be only in my lower body so far (though if my cat lies on my arm for too long, I'll get a milder form of the same sensation).

    We've been adding layer after layer of things to reduce pressure to my couch and bed (wool pads, foam padding, etc.) which helps a bit but it seems to still be getting worse and worse. I'm scared to take any hard core pain killers to stop the pain because if it is some sort of pressure injury or something related, I need to know when it's getting bad so that I can try to shift off of that area. Doctor just says to move around every half hour (I'm already needing to move before then and it's all still getting steadily worse). Seems very over her head with all the weird symptoms and tends to just lump them in as "CFS stuff" rather than looking any further for specific causes. Can't get into a specialist who knows what they're doing yet.

    Can't tell if this pain is the beginnings of a pressure injury from being bed bound, or if it's a "normal" CFS/Fibro type thing. ...Or possibly related somehow to the multitude of other symptoms I'm having, of course (in particular, blood pooling, circulation issues or bleeding problems - have also had some capillaries bursting when I have massage, and when I stand my feet turn red with white blotches and itch like mad). Has anyone else had this type of pain that is only brought on by pressure? Did you figure out what it was?

    Thank you so much for your help. I'm feeling so lost here already with everything else going on with me. Did not need this puzzle on top of it. And I'm so scared that I might make something worse...
     
  2. taniaaust1

    taniaaust1

    Messages:
    8,297
    Likes:
    5,248
    Sth Australia
    Yes I had that issue but worst when I was very bad. It got so bad that pressure on any part of my body at all hurt, even the pressure of sheets on my body hurt me.. things became quite hellish as far as pain goes. Fortunately I dont have that issue anymore but it was an ongoing issue for me for quite a while. (I had that issue when I also had severe FM).

    POTS can have the blood pooling in the feet and legs when one stands and can make things flush (red) and it may itch as the area may become swollen
    ........
    Those with ME can get Vasculitis with it. Your post made me think you may also have Vasculitis going on http://en.wikipedia.org/wiki/Vasculitis
     
  3. Cali

    Cali

    Messages:
    6
    Likes:
    0
    Thank you for responding. Maybe the pressure pain is just me starting to develop more fibro symptoms. I just always hate to assume something like that, as I've been able to find a cause and effect relationship for a lot of my other symptoms and use that knowledge to reduce or eliminate them.

    I definitely have pretty intense POTS going on. I had assumed that was what the red feet were, but thought I would mention just in case.

    I will put vasculitis on my list of things to check into. I'm not sure how much luck I'm going to have trying to get my doctor to look into it, though. It's amazing to me sometimes how reluctant she seems to investigate the reasons behind some of my symptoms. Just likes to sweep it all under the carpet of "you have CFS". Some of what's wrong with me has been FIXABLE, though... I wish very much that I"d listened to my gut on some things and really pushed to get them tested sooner.
     
  4. Sparrow

    Sparrow Senior Member

    Messages:
    671
    Likes:
    770
    Canada
    I was having this recently as well, but I think I may have figured mine out (fingers crossed, it seems to be just about gone now most of the time - and it was VERY bad there for a while). Have it narrowed down to two possibilities. The couch where I spend my days dips down slightly in the centre, so I've been lying with my rear down lower than the rest of me. I've been propping that section up with extra cushions, and so far so good. I also had begun to do some light bouncing (saw it on one of Cheney's things, suggested to help "reset" the autonomic nervous system and potentially help with POTS. Not sure how much stock I put in it, but figured it couldn't hurt). Maybe it could hurt, though, as it turns out, since I realized that might also be putting extra demand on the areas that were getting sore. Either way, correcting both things lined up perfectly with the intense pain suddenly resolving. So I'm hopeful.

    Hope you figure it out soon. It's a really helpless and frustrating situation to be stuck in. I feel for you.
     
  5. taniaaust1

    taniaaust1

    Messages:
    8,297
    Likes:
    5,248
    Sth Australia
    Thou i had that happen when I had FM, I do think for myself, it was some coexisting condition to the FM.

    Im right now trying to think what that sensitivity is called, there is an actual medical name for the problem. I may of been something to do with the "fascia" of the body . ah I just remembered (thank God for Molybdenum supplements!) .. Myofascial Pain Syndrome?? (MPS) which can be a coexisting medical issue. Maybe some of your issue is MPS esp since you have FM.

    "How is myofascial pain diagnosed?

    Trigger points can be identified by pain that results when pressure is applied to an area of a person's body. In the diagnosis of myofascial pain syndrome, four types of trigger points can be distinguished:

    An active trigger point is an area of extreme tenderness that usually lies within the skeletal muscle and which is associated with a local or regional pain.
    A latent trigger point is a dormant (inactive) area that has the potential to act like a trigger point.
    A secondary trigger point is a highly irritable spot in a muscle that can become active due to a trigger point and muscular overload in another muscle.
    A satellite myofascial point is a highly irritable spot in a muscle that becomes inactive because the muscle is in the region of another trigger pain."
     
  6. valentinelynx

    valentinelynx Senior Member

    Messages:
    194
    Likes:
    68
    Tucson
    I've personally been wondering if some symptoms are due to poor circulation, particularly in sleep. I want to get an "ambulatory" blood pressure monitor so I can see how low my BP goes at night. Maybe that's the explanation for why my hands are always asleep when I wake up after being asleep for more than 4 hours. I also wake with terrible pain in my ribs if I lie on my side. I have an elaborate "nest" of pillows to support me so I don't have to use any muscle power to stay in one position and to minimize pressure points as much as possible.

    The blood pooling in your feet sounds a lot like a symptom of orthostatic intolerance. You might want to pursue testing to see if your BP is dropping when you stand due to inadequate vascular tone (neurally mediated hypotension) or if your heart rate is rising too much (POTS). If your BP is an issue, you might do well with midodrine, for example. There's a lot of discussion of POTS and NMH on this forum, including the kind of specialized testing needed (the usual simple "orthostatics" done in a doctor's office is not adequate).
     
  7. Mark

    Mark Acting CEO

    Messages:
    4,532
    Likes:
    2,016
    Sofa, UK
    Some more terms to look into are allodynia and peripheral neuropathy.

    It's very difficult to tell whether we are describing the same thing when we talk about these kinds of pain, but in my case, after many years of confusion about it, it turned out that the nature of the surfaces I'm in contact with are very significant. I get itching all over when I'm in contact with something I shouldn't be - and almost everything causes those sensations; both clothes and the fabrics I'm sitting on or things I'm touching. The way you describe the pain building up gradually and then taking a long time to subside is very familiar. What has made the biggest difference to me has been searching out 100% cotton, untreated clothing - and I still have to shop around within those criteria to find something I can wear comfortably. The other thing that made a huge difference was Sofa - a semi-aniline leather sofa on which I live and sleep; I can't tolerate anything else. But it was not a cheap solution... :(

    The good news for me is that attacking those symptoms has been extremely helpful with all my other symptoms, and once I'd identified that factor as crucial in dramatically diminishing the quality of my sleep, everything else improved. The extreme sensitivity remains, and is hard to manage, but at least I have some control now.

    Your mention of the little red dots may also be significant - that suggests a possible immune response to me; I've never had a rash myself but I think it means an immune response is likely (though there may be other explanations I'm not aware of).

    Finally, I would in general advise to take basic painkillers (like neurofen and paracetamol) at the drop of a hat - so long as you are able to tolerate them. They will probably make no difference to this particular kind of pain - they have absolutely no effect for me, and no painkiller I've tried is effective - but in general, if you are in pain it's likely your body is also experiencing widespread inflammation, and that inflammation is in itself generally far more harmful than any effects of long-term use of anti-inflammatories. That's generally true, especially for conditions like chronic back pain, and it's crucial to understand anti-inflammatories aren't just painkillers in such situations, they are medicines and it's good for you to reduce the inflammation. But this is even more true for people like us, because inflammation is strongly implicated in the rest of the disease mechanisms - the inflammation triggers auto-immune responses, and inflammatory cytokines encourage the growth of XMRV...so whichever way you look at it, if you can tolerate anti-inflammatories you should not be shy about taking them when in pain...the usual disclaimers apply (I am not a doctor) but I think I'm on solid ground here, medically...I've received that advice from several specialists...
     

See more popular forum discussions.

Share This Page