Inflammation, A Hopefully Constructive Discussion

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  • geotrice
    geotrice Posts: 274 Member
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    kalegria24 wrote: »
    I'm intrigued with those who are speaking of fatigue. I'm working with my doctors to see why I HAVE to sleep 9+ hours a night, and still may be fatigued in the day. So far? Ain't nuthin' wrong w/ me! So later I'll look at some of the links, and see what else comes out here. Thanks!!!!

    Have you had your vitamin D level checked? Most of us are deficient and it can cause fatigue/lethargy, along with a host of other issues. I'm deficient and recently started taking a high dose D3-night and day difference already :)

    You could go to the beach and get some dermal inflammation and your body will produce Vitamin D.
  • keelyjrs
    keelyjrs Posts: 62 Member
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    keelyjrs wrote: »
    Deep tissue massage is tricky, yes it can help sort out the deep knots and ease tension but it can be excruciating for someone already in pain, particularly if they get you on a tender point

    I get migraine injections in some of my tender points. Fun times.

    I so want to hug you right now
    Gently :(
  • keelyjrs
    keelyjrs Posts: 62 Member
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    kalegria24 wrote: »
    I'm intrigued with those who are speaking of fatigue. I'm working with my doctors to see why I HAVE to sleep 9+ hours a night, and still may be fatigued in the day. So far? Ain't nuthin' wrong w/ me! So later I'll look at some of the links, and see what else comes out here. Thanks!!!!

    Have you had your vitamin D level checked? Most of us are deficient and it can cause fatigue/lethargy, along with a host of other issues. I'm deficient and recently started taking a high dose D3-night and day difference already :)

    I have to take magnesium high potency and vit d or I'd just sleep my life away!
  • tomatoey
    tomatoey Posts: 5,446 Member
    edited May 2015
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    Every single time I get blood work, I have high ESR (an indicator of inflammation), no matter what else is going on. But then again, I usually get blood work when I'm not feeling well. I apparently do not have RA or any other such disease. I do have a genetic marker that predisposes for another disease, but not the symptoms.

    I'm very low in vit D and moderately low in iron. I supplement regularly for Vit D but am less consistent with iron.

    I struggle with fatigue - getting going is hard (it's better than it was, since I started with Vit D). Being better about iron might help. But it could be down to all or any of those things, alone or in combination.

    I don't know about how sugar might play into it at all and haven't thought about it.

    The high ESR has confused doctors, though. (I don't suppose anyone has any insights about that?)
  • EvgeniZyntx
    EvgeniZyntx Posts: 24,208 Member
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    tomatoey wrote: »
    Every single time I get blood work, I have high ESR (an indicator of inflammation), no matter what else is going on. But then again, I usually get blood work when I'm not feeling well. I apparently do not have RA or any other such disease. I do have a genetic marker that predisposes for another disease, but not the symptoms.

    I'm very low in vit D and moderately low in iron. I supplement regularly for Vit D but am less consistent with iron.

    I struggle with fatigue - getting going is hard (it's better than it was, since I started with Vit D). Being better about iron might help. But it could be down to all or any of those things, alone or in combination.

    I don't know about how sugar might play into it at all and haven't thought about it.

    The high ESR has confused doctors, though. (I don't suppose anyone has any insights about that?)

    A high ESR may be a co-indication of your low iron and some sort of anemia. However, it isn't a very selective test and probably would be followed by other tests if either high or present in every blood work. I would imagine that urine, blood cultures and skin tests were performed? Particularly if your are showing fatigue symptoms and elevated ESR - pointing to a possible infection (not just inflammation) or other issues - would result in other tests.

    Don't underplay the fatigue with your doctor. "I'm a little fatigued" is often the worst info you can give - underline it. "I'm really struggling with fatigue" is another clinical sign of something wrong.

  • Angiefit4life
    Angiefit4life Posts: 210 Member
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    tomatoey wrote: »
    Every single time I get blood work, I have high ESR (an indicator of inflammation), no matter what else is going on. But then again, I usually get blood work when I'm not feeling well. I apparently do not have RA or any other such disease. I do have a genetic marker that predisposes for another disease, but not the symptoms.

    I'm very low in vit D and moderately low in iron. I supplement regularly for Vit D but am less consistent with iron.

    I struggle with fatigue - getting going is hard (it's better than it was, since I started with Vit D). Being better about iron might help. But it could be down to all or any of those things, alone or in combination.

    I don't know about how sugar might play into it at all and haven't thought about it.

    The high ESR has confused doctors, though. (I don't suppose anyone has any insights about that?)





    Just curious is the genetic marker Hlb-27?

  • tomatoey
    tomatoey Posts: 5,446 Member
    edited May 2015
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    tomatoey wrote: »
    Every single time I get blood work, I have high ESR (an indicator of inflammation), no matter what else is going on. But then again, I usually get blood work when I'm not feeling well. I apparently do not have RA or any other such disease. I do have a genetic marker that predisposes for another disease, but not the symptoms.

    I'm very low in vit D and moderately low in iron. I supplement regularly for Vit D but am less consistent with iron.

    I struggle with fatigue - getting going is hard (it's better than it was, since I started with Vit D). Being better about iron might help. But it could be down to all or any of those things, alone or in combination.

    I don't know about how sugar might play into it at all and haven't thought about it.

    The high ESR has confused doctors, though. (I don't suppose anyone has any insights about that?)

    A high ESR may be a co-indication of your low iron and some sort of anemia. However, it isn't a very selective test and probably would be followed by other tests if either high or present in every blood work. I would imagine that urine, blood cultures and skin tests were performed? Particularly if your are showing fatigue symptoms and elevated ESR - pointing to a possible infection (not just inflammation) or other issues - would result in other tests.

    Don't underplay the fatigue with your doctor. "I'm a little fatigued" is often the worst info you can give - underline it. "I'm really struggling with fatigue" is another clinical sign of something wrong.

    Thank you so much for your thoughts, @EvgeniZyntx . Yes, other tests have been done at the same time, and usually I have had something or other going on, but that ESR is usually really high (sorry, can't remember the number). I'm low-ish on iron, but just under the normal range, so anemia wasn't suggested. The fatigue is bothersome, though. I will be more assertive about this with my doctor. Thank you.
    amwcnw wrote: »
    tomatoey wrote: »
    Every single time I get blood work, I have high ESR (an indicator of inflammation), no matter what else is going on. But then again, I usually get blood work when I'm not feeling well. I apparently do not have RA or any other such disease. I do have a genetic marker that predisposes for another disease, but not the symptoms.

    I'm very low in vit D and moderately low in iron. I supplement regularly for Vit D but am less consistent with iron.

    I struggle with fatigue - getting going is hard (it's better than it was, since I started with Vit D). Being better about iron might help. But it could be down to all or any of those things, alone or in combination.

    I don't know about how sugar might play into it at all and haven't thought about it.

    The high ESR has confused doctors, though. (I don't suppose anyone has any insights about that?)





    Just curious is the genetic marker Hlb-27?

    Yup :) (I think it's HLA-B27?) But AS isn't a foregone conclusion with that, or so I'm given to understand. Nothing else would suggest it. I have kind of a lot of ortho issues, but they're all pretty clearly related to overuse or injury.

    Thank you both so much :) Sorry for the derail!
  • Angiefit4life
    Angiefit4life Posts: 210 Member
    edited May 2015
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    Nope it's HLB-27, I have AS and pos for gene but with all of extras stuff. They say you can be a carrier but it stays dormant. Wished mine I would have:) Good luck! Yes- sorry for the derailment too mama peach :).


    Edited because apparently I have been writing it all wrong this past year. HLA-B27. :)
  • PeachyCarol
    PeachyCarol Posts: 8,029 Member
    edited May 2015
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    amwcnw wrote: »
    Nope it's HLB-27, I have AS and pos for gene but with all of extras stuff. They say you can be a carrier but it stays dormant. Wished mine I would have:) Good luck! Yes- sorry for the derailment too mama peach :).

    No derailment. Being a carrier of disease without it manifesting is a topic I'm interested in; specifically what might trigger it to manifest. I also think it's germane to this discussion.

    We know from his IBS work-up that my son carries a gene for Crohn's, and I wonder which one of us he got it from.

  • Angiefit4life
    Angiefit4life Posts: 210 Member
    edited May 2015
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    amwcnw wrote: »
    Nope it's HLB-27, I have AS and pos for gene but with all of extras stuff. They say you can be a carrier but it stays dormant. Wished mine I would have:) Good luck! Yes- sorry for the derailment too mama peach :).

    No derailment. Being a carrier of disease without it manifesting is a topic I'm interested in; specifically what might trigger it to manifest. I also think it's germane to this discussion.

    We know from his IBS work-up that my son carries a gene for Crohn's, and I wonder which one of us he got it from.


    They say stress and or a Bacterial infection can trigger (AS) I had Mirsa a few years back and at the time the inflammation started last year, I was under a lot of work stress.


    What is the genetic trait for Crohns?
  • EvgeniZyntx
    EvgeniZyntx Posts: 24,208 Member
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    amwcnw wrote: »
    Nope it's HLB-27, I have AS and pos for gene but with all of extras stuff. They say you can be a carrier but it stays dormant. Wished mine I would have:) Good luck! Yes- sorry for the derailment too mama peach :).

    No derailment. Being a carrier of disease without it manifesting is a topic I'm interested in; specifically what might trigger it to manifest. I also think it's germane to this discussion.

    We know from his IBS work-up that my son carries a gene for Crohn's, and I wonder which one of us he got it from.

    if you are interested in triggers - here is some of the research on the current models:
    http://www.ncbi.nlm.nih.gov/pubmed/16377230
  • PeachyCarol
    PeachyCarol Posts: 8,029 Member
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    amwcnw wrote: »
    amwcnw wrote: »
    Nope it's HLB-27, I have AS and pos for gene but with all of extras stuff. They say you can be a carrier but it stays dormant. Wished mine I would have:) Good luck! Yes- sorry for the derailment too mama peach :).

    No derailment. Being a carrier of disease without it manifesting is a topic I'm interested in; specifically what might trigger it to manifest. I also think it's germane to this discussion.

    We know from his IBS work-up that my son carries a gene for Crohn's, and I wonder which one of us he got it from.


    They say stress and or a Bacterial infection can trigger (AS) I had Mirsa a few years back and at the time the inflammation started last year, I was under a lot of work stress.


    What is the genetic trait for Crohns?

    I don't remember, I just remember his gastro telling us he had it, but that it didn't mean he'd ever manifest the disease. I also remember being really glad he didn't have the gene for celiac.

    We're pretty sure that pregnancy triggered both my celiac and my PsA. Pregnancy is a major stress on the body!
  • Nony_Mouse
    Nony_Mouse Posts: 5,646 Member
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    Timely discussion MP, my joints hurt like hell atm.
  • PeachyCarol
    PeachyCarol Posts: 8,029 Member
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    amwcnw wrote: »
    Nope it's HLB-27, I have AS and pos for gene but with all of extras stuff. They say you can be a carrier but it stays dormant. Wished mine I would have:) Good luck! Yes- sorry for the derailment too mama peach :).

    No derailment. Being a carrier of disease without it manifesting is a topic I'm interested in; specifically what might trigger it to manifest. I also think it's germane to this discussion.

    We know from his IBS work-up that my son carries a gene for Crohn's, and I wonder which one of us he got it from.

    if you are interested in triggers - here is some of the research on the current models:
    http://www.ncbi.nlm.nih.gov/pubmed/16377230

    My derp is strong today, I'm not sure I understood that one!
  • tiptoethruthetulips
    tiptoethruthetulips Posts: 3,361 Member
    edited May 2015
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    tomatoey wrote: »
    .

    The high ESR has confused doctors, though. (I don't suppose anyone has any insights about that?)

    If there is a family history of AI issues, it is possible that you may have some underlying symptoms or blood markers that are yet to fully develop.

    About 11 years ago, blood tests were high for ESR and over the years the reading has been high enough that my doctor indicated if he did't know better he'd think I had pneumonia.

    Up to about two years ago, there were generally no other issues or symptoms except for a corresponding high CRP readings. Then I started developing symptoms for Sjogren's Syndrome (AI)...blood tests were negative for the antibodies, however, minor salivary gland biopsy verified the syndrome

    My doctor has now linked the prior high ESR readings to underlying/not yet apparent symptoms of the syndrome.

    Autoimmune issues run high in my family history..lupus, diabetes 1, and now the sjogren's syndrome.

    It also became apparent that I had gone through early menopause (no indication at all), I also have low vit d levels which I supplement high for and osteopenia (low bone mineral density, can be reversible but also a pre-cursor to osteoporsis) for which I supplement with calcium, vit k and magnesium.

    Iron levels are monitored due to immediate family history of haemochromatosis.


  • PeachyCarol
    PeachyCarol Posts: 8,029 Member
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    I should also add that I had high ESR and CRP tests for a few years too before we were able to connect all the dots on my PsA.

    I also test negative for HLA-B27, but apparently 40% of PsA patients don't carry it.
  • rdfaye
    rdfaye Posts: 39 Member
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    Another person with AI problems here. RA and Sjogren's, plus I also have a slew of other disorders, all of which are genetic. My sister and I refer to the family tree as the "genetic cesspool." I do take Humira and methotrexate, along with an NSAID, for the RA. Plus meds for other conditions, fish oil, and calcium with vit. D. My CRP has been controlled and in the normal range for years, but I still have symptoms. Mostly fatigue, but when I feel like I might flare, my whole body starts feeling tense and out of sorts. No pain, but almost like I want to crawl out if my skin, plus a low grade, sort of burning feeling inside. Getting extra rest usually does the trick. I have some lower back pain, probably from sitting at the computer at work, and Pilates does the trick for that.

    I feel the best when getting enough sleep, doing Pilates on a regular basis, and eating the Mediterranean style diet. I love the recipes, but it is mostly following the principles. Cutting back on red meat and having one or two meatless days a week really help me feel better. My rheumy recommends it, and I miss not keeping up with it do to surgery recovery. I still am not able to stand and cook much of anything yet.

    Fatigue is a real issue, as I'm have at least 3 disorders which trigger it. I will spare you for now, but it ius a problem.
  • PeachyCarol
    PeachyCarol Posts: 8,029 Member
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    What NSAID are you on rdfaye? I'm also on one (meloxicam) for my fibro and DDD. It is indeed very hard having a double or triple whammy when it comes to fatigue. That's an interesting, but apt description of how it feels going into a flare.

    I should add, probably apropos of nothing to this particular discussion, that I also have a temporal lobe meningioma. It's sitting in place for now, closely monitored to watch its growth. My memory? Sucks.
  • Danilynn1975
    Danilynn1975 Posts: 294 Member
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    Inflammation means my thyroid throbs, my face swells, all over swells up. Like the skin is too tightly stretched.

    Then the joint pain starts in, mainly in my neck, my ankles, my wrists and thumbs. I have another nifty thing that happens when inflammation hits, my collarbones get pushed out because of swelling. they will do it independently or together.

    Not long after the headaches start. The sort of headaches that feel like a little elf is in there with a chisel and hammer trying to escape combined with the feeling of someone squeezing my head in a vise.

    I have Hashimoto's and this is where it gets odd, I also have Grave's antibodies too. So it's a not so thrilling ride of hormones surging and dropping off the face of the cliff. I have to say, as bad as hypothyroid symptoms are they beat the snot out of the hyperthyroid symptoms. Nothing like a resting heart rate in the 130s to make you freak.

    I have discovered some of the triggers to the inflammation are food related. As for the rest, I guess my greater than 1000 TPOab antibodies get bored and stage a shock and awe campaign against my thyroid, then other times the TSI antibodies get tired of missing the fun and join in to see who gets to be victorious for a while in the battle for killing the thyroid off.

    Anyway, best of luck to all with inflammation. It sucks.
  • rdfaye
    rdfaye Posts: 39 Member
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    Same one mamapeach, Mobic aka meloxicam. Sigh--I still miss Vioxx. Best NSAID ever. What is DDD? I can't place that acronym.

    My fatigue started with RA, though I have always loved a good nap. After convincing a doctor I was nearly narcoleptic, a sleep study determined moderate sleep apnea. Treating that made it safer to be on the road with me, but I was still tired. Finally, 3 years ago I was diagnosed with Inattentive ADHD. My niece and son were both diagnosed as kids, and while researching to help him I realized I had a lot of the symptoms, minus the hyperactivity. But I could not get a referral for testing, because "I did well in school." Things got really bad symptom-wise after my husband died, but I could not get a referral. Finally a doctor friend gave me the name of an adult ADHD specialist who could tell me yes or no if I had it. Within 45 minutes of the first appointment, I was asked "how have you not been diagnosed until now?" My inattention scores were off the charts. The meds are a huge help, and after much reading I have learned that ADHD presents very differently in girls and boys, so I was overlooked. Among other things, it causes extreme fatigue and sleepiness, especially in inattentive types.

    So my moral is if I keep the RA under control, use the bipap machine at night, and take the ADHD meds, my fatigue is manageable.

    Sorry to hear about the thyroid problems Danilynn. That sounds horrible, especially the headaches. Ow.