Fibromyalgia? Chronic Fatigue? Something viral?
February 4, 2015 11:11 PM Subscribe
YANMD. Early last fall, I had something come on that felt like a cold. Swollen glands, body pain. Fatigue. Maiaise. I had no respiratory symptoms. After six weeks, I thought it might be mono. But three mono tests have come back negative.
After having it for a couple weeks I developed pain. The pain is all over, including in my joints. My level of fatigue is anywhere from moderate to extreme, depending on how hard I push myself. For the most part, I'm ready for bed at around 730 at night. My hands and feet feel swollen, though they don't appear swollen.
When my third mono test came back negative, I thought it might be fibromyalgia. Thoughts? Thanks! For those of you with FM, what are you doing for it?
After having it for a couple weeks I developed pain. The pain is all over, including in my joints. My level of fatigue is anywhere from moderate to extreme, depending on how hard I push myself. For the most part, I'm ready for bed at around 730 at night. My hands and feet feel swollen, though they don't appear swollen.
When my third mono test came back negative, I thought it might be fibromyalgia. Thoughts? Thanks! For those of you with FM, what are you doing for it?
Best answer: Possibly Lyme disease, and it can hide on tests (my husband was tested like three times and in the hospital before we got a positive, even though we knew that's what it was and are in a Lyme-literate area) so if that could be it, try to find a specialist unless your primary doc understands the testing protocol really well.
posted by A Terrible Llama at 3:43 AM on February 5, 2015
posted by A Terrible Llama at 3:43 AM on February 5, 2015
Best answer: Have you been evaluated by a rheumatologist?
posted by telegraph at 4:54 AM on February 5, 2015
posted by telegraph at 4:54 AM on February 5, 2015
Best answer: Seconding the rheumatologist.
Also, do you the pressure points associated with fibro?
posted by Room 641-A at 5:16 AM on February 5, 2015
Also, do you the pressure points associated with fibro?
posted by Room 641-A at 5:16 AM on February 5, 2015
Best answer: I have been in a similar situation. What I did was see my GP and get tested for all the things, or at least for Vitamin D deficiency, Vitamin B-12 deficiency, gluten allergy, thyroid issues, blood count, CRP, and Lyme disease (and I think more things, but those are the ones I remember). There are a lot of things that can cause these symptoms, and many of them are more easily treated than fibro.
If you have been to your doctor, but they didn't run all the tests, I'd suggest going back, telling them that the symptoms are still there/getting worse, and being very specific about how this is affecting your life. (So not "I'm tired and achy all the time" -- who isn't -- but "I am sleeping 10-12 hours per day, and I am still tired. This is affecting my ability to do my job. I would rate my joint pain as between a 2 and a 5 on most days.")
Doctors will not follow up with you -- you have to follow up with them. And the more specific you can be about how this is affecting your life, the more seriously they are likely to take you.
If you've already been to your doctor and they have run All the Tests, ask for a rheumatology consult.
It could be fibro, but don't accept a diagnosis of exclusion until everything else has actually been excluded. (It wasn't fibro in my case, and it may not be in yours.)
Hang in there! It can be very frustrating to deal with medical professionals when you are already feeling shitty.
posted by pie ninja at 5:33 AM on February 5, 2015 [7 favorites]
If you have been to your doctor, but they didn't run all the tests, I'd suggest going back, telling them that the symptoms are still there/getting worse, and being very specific about how this is affecting your life. (So not "I'm tired and achy all the time" -- who isn't -- but "I am sleeping 10-12 hours per day, and I am still tired. This is affecting my ability to do my job. I would rate my joint pain as between a 2 and a 5 on most days.")
Doctors will not follow up with you -- you have to follow up with them. And the more specific you can be about how this is affecting your life, the more seriously they are likely to take you.
If you've already been to your doctor and they have run All the Tests, ask for a rheumatology consult.
It could be fibro, but don't accept a diagnosis of exclusion until everything else has actually been excluded. (It wasn't fibro in my case, and it may not be in yours.)
Hang in there! It can be very frustrating to deal with medical professionals when you are already feeling shitty.
posted by pie ninja at 5:33 AM on February 5, 2015 [7 favorites]
Best answer: Get a full panel blood test (if you haven't already) and if the Rheumatologist can't come up with anything, maybe consider seeing a hemotologist?
posted by WeekendJen at 9:11 AM on February 5, 2015
posted by WeekendJen at 9:11 AM on February 5, 2015
Response by poster: Thanks, all. I've had three full-blood workups and nothing. Three Lyme tests including a Western Blot and nothing. (And I'm in LA.) I'll see a rheumatologist. Can one find the FM pressure points oneself?
posted by persona au gratin at 9:39 AM on February 5, 2015
posted by persona au gratin at 9:39 AM on February 5, 2015
Best answer: Just addressing part of your question, but when I was sick with CFS and had Fibro pain (I didn't have enough pressure points at one of my dr's visits, so didn't have an official fibro diagnosis, but had constant, bad muscle/joint/body pain), one things that helped was low dose naltrexone. It's basically an off label use of an off patent medication, and online discussion of it is somewhat polarized with some folks saying it's the cure for everything under the sun and others saying it's bunk.
Interestingly for fibro there is actually at least some scientific evidence of it's effectiveness.
I don't think it's a cure all, but found it was one of the more helpful things I was able to take. It didn't remove my pain, but it seemed to "turn down the volume" on my pain by a couple of notches. And with chronic pain, every little bit of improvement helped.
There are some downside, but they are all of the practical kind: it can be a little futzy to get the dosage right (e.g. I maxed out at a dosage that was 1/10th of the normal "low" dosage), it may be difficult to get it prescribed (since it's an off label usage), that kind of thing.
But on the upside the side effects are SUPER mild to non-existent, and very short lived (on the scale of hours). There's no physical dependence, so no threat of withdrawal symptoms or need to taper dosages when going off (which I believe can be an issue with more heavy hitting drugs like Lyrica). So it's not a dangerous or scary med to try out.
Please feel free to memail me if you'd like a little more info about either LDN or other things that were in my treatment regime (combo's of rx and supplement/lifestyle things). Or just some commiseration on being sick. It sucks. There's no two ways about it.
Good luck.
posted by pennypiper at 10:10 AM on February 5, 2015 [3 favorites]
Interestingly for fibro there is actually at least some scientific evidence of it's effectiveness.
I don't think it's a cure all, but found it was one of the more helpful things I was able to take. It didn't remove my pain, but it seemed to "turn down the volume" on my pain by a couple of notches. And with chronic pain, every little bit of improvement helped.
There are some downside, but they are all of the practical kind: it can be a little futzy to get the dosage right (e.g. I maxed out at a dosage that was 1/10th of the normal "low" dosage), it may be difficult to get it prescribed (since it's an off label usage), that kind of thing.
But on the upside the side effects are SUPER mild to non-existent, and very short lived (on the scale of hours). There's no physical dependence, so no threat of withdrawal symptoms or need to taper dosages when going off (which I believe can be an issue with more heavy hitting drugs like Lyrica). So it's not a dangerous or scary med to try out.
Please feel free to memail me if you'd like a little more info about either LDN or other things that were in my treatment regime (combo's of rx and supplement/lifestyle things). Or just some commiseration on being sick. It sucks. There's no two ways about it.
Good luck.
posted by pennypiper at 10:10 AM on February 5, 2015 [3 favorites]
Response by poster: pennypiper: That's interesting. Did the naltrexone help with your energy?
posted by persona au gratin at 12:52 PM on February 5, 2015
posted by persona au gratin at 12:52 PM on February 5, 2015
Any chance you could have been exposed to Lyme in Europe? I know that, at least in Canada, the standard Lyme test they do does not check for European Lyme.
posted by carolr at 4:12 PM on February 5, 2015 [1 favorite]
posted by carolr at 4:12 PM on February 5, 2015 [1 favorite]
Best answer: There are a lot of tests that are only done if there's a specific reason for them - they're not done in an ordinary workup for generalized complaints, but they sure can cause trouble. By the time some problems have gone far enough to affect the standard blood panel a person can be really sick. Vitamin B12 and folic acid are two things a person would never seriously think of but I was hospitalized with deficiencies of both due to years and years of Dilantin therapy. I was so sick I wanted to die - seriously; I'd been losing weight slowly for a year or more, was very thin, the skin on my face and neck had discolored with a peculiar brownish splotchy mess - very much like what they used to call the "mask of pregnancy" but I wasn't pregnant. I was so tired I could hardly stand up and I was freezing all the time. I had pains in muscles that I'd had for so many years I was used to them. I was emotionally exhausted and actually went to my doctor hoping for a "tranquilizer" (this was before antidepressants were in heavy use) because my daughter was skipping school and playing with drugs and I had lost all ability to cope. The doctor forced me into the hospital because he'd known me for years and he simply said there was something wrong with me physically and he was going to find out what it was. It only took a couple of days to get the tests back - he said he was suspicious of it because of my skin color - and I was started on shots. ONE SHOT and I felt so much better it was scary. Within a week I was like a new person. I'm not a person who uses vitamins or supplements or uses any sort of woo woo medicine and neither was my doctor, but that's what nearly killed me. He told me that over 80% of people with serious mental disorders - he was talking those who were institutionalized with mental illness - were drastically low on B12 and folic acid. In my case, the range was something like 300-1200 and mine was 16 - for the B12 - don't remember the folic acid.
Point is that they don't automatically check your B12 levels - when you die, I suppose, your numbers will reflect your illness in the MCV or MCHC portion of your white count differential, but if you're still able to walk and talk your numbers will be normal so they won't bother testing it. Dilantin is one of several drugs that can cause this type of anemia - it's called macrocytic or megaloblastic anemia - it's NOT the usual "I'm anemic" type of anemia at all.
Have you lost weight without trying to? It doesn't have to be a lot, doesn't have to be fast, but if you're slowly losing weight without dieting, that's significant. In the same vein, how's your appetite? Has it changed? Have you changed your diet - cut out gluten, gone paleo, etc?
Have you noticed any skin discoloration? It wasn't long after I got back on my feet that my daughter and I saw a lady in the grocery store who looked exactly like I had before I started the injections. It was a terrible position to be in - I couldn't say anything to her, but how I wish someone had come up to me when I was dragging my way through the store and told me what to get tested for. Still, to speak to her like that - well, it can't be done.
Anyway, there are many things that don't show up on standard testing. My latest panel doesn't even include lipase and/or amylase, and I've had two rounds of pancreatitis confirmed by an amylase that was four times normal - emphasized by my doctor who was so weird about it I felt like he was blaming me for the high number when it was my gallbladder that was at fault. Liver, kidney, endocrine systems all have peculiar things that need more testing to find them but doctors don't want to do the testing because we've gone too far on the side of testing for everything so now they don't test for much of anything until a neon sign flashes on your forehead demanding action.
So keep after 'em - see a rheumatologist because they're pretty super as far as knowing about the sneaky stuff; neurologists and endocrinologists also. But don't get pushed to the back burner when you're feeling so bad - you need help, so demand it.
Lyme disease is from a tick and often we have no idea we've been bit, bird flu is from birds - you haven't picked up any dead birds, have you? - hanta virus is from rodent droppings - have you swept up any old mouse dirt from your family cabin? - there's Epstein-Barr, toxoplasmosis from cat litter pans, "toxic shock" from tampons, exposure to formaldehyde and pesticides and other awful stuff in new carpets and cheap furniture, lead exposure from scraping and painting an old home, and loads of other horrors, none of which are picked up on standard tests, but are identified by a sharp doctor who can connect the dots for a bunch of symptoms into an answer.
I'm sorry about the length of this, but I know how easy it is to just give up and accept stuff you shouldn't have to because it's just plain too much work to keep fighting it.
posted by aryma at 6:53 PM on February 5, 2015
Point is that they don't automatically check your B12 levels - when you die, I suppose, your numbers will reflect your illness in the MCV or MCHC portion of your white count differential, but if you're still able to walk and talk your numbers will be normal so they won't bother testing it. Dilantin is one of several drugs that can cause this type of anemia - it's called macrocytic or megaloblastic anemia - it's NOT the usual "I'm anemic" type of anemia at all.
Have you lost weight without trying to? It doesn't have to be a lot, doesn't have to be fast, but if you're slowly losing weight without dieting, that's significant. In the same vein, how's your appetite? Has it changed? Have you changed your diet - cut out gluten, gone paleo, etc?
Have you noticed any skin discoloration? It wasn't long after I got back on my feet that my daughter and I saw a lady in the grocery store who looked exactly like I had before I started the injections. It was a terrible position to be in - I couldn't say anything to her, but how I wish someone had come up to me when I was dragging my way through the store and told me what to get tested for. Still, to speak to her like that - well, it can't be done.
Anyway, there are many things that don't show up on standard testing. My latest panel doesn't even include lipase and/or amylase, and I've had two rounds of pancreatitis confirmed by an amylase that was four times normal - emphasized by my doctor who was so weird about it I felt like he was blaming me for the high number when it was my gallbladder that was at fault. Liver, kidney, endocrine systems all have peculiar things that need more testing to find them but doctors don't want to do the testing because we've gone too far on the side of testing for everything so now they don't test for much of anything until a neon sign flashes on your forehead demanding action.
So keep after 'em - see a rheumatologist because they're pretty super as far as knowing about the sneaky stuff; neurologists and endocrinologists also. But don't get pushed to the back burner when you're feeling so bad - you need help, so demand it.
Lyme disease is from a tick and often we have no idea we've been bit, bird flu is from birds - you haven't picked up any dead birds, have you? - hanta virus is from rodent droppings - have you swept up any old mouse dirt from your family cabin? - there's Epstein-Barr, toxoplasmosis from cat litter pans, "toxic shock" from tampons, exposure to formaldehyde and pesticides and other awful stuff in new carpets and cheap furniture, lead exposure from scraping and painting an old home, and loads of other horrors, none of which are picked up on standard tests, but are identified by a sharp doctor who can connect the dots for a bunch of symptoms into an answer.
I'm sorry about the length of this, but I know how easy it is to just give up and accept stuff you shouldn't have to because it's just plain too much work to keep fighting it.
posted by aryma at 6:53 PM on February 5, 2015
Best answer: Can one find the FM pressure points oneself?
In my experience, yes (unlike, say, trying to tickle yourself, if that's what you mean.) Also in my experience you would already know those are tender spots, even if you didn't know why (or that it wasn't normal.)
posted by Room 641-A at 7:12 PM on February 5, 2015
In my experience, yes (unlike, say, trying to tickle yourself, if that's what you mean.) Also in my experience you would already know those are tender spots, even if you didn't know why (or that it wasn't normal.)
posted by Room 641-A at 7:12 PM on February 5, 2015
Response by poster: Thanks all. I'm going to schedule a trip to the rheumatologist.
posted by persona au gratin at 1:02 AM on February 6, 2015
posted by persona au gratin at 1:02 AM on February 6, 2015
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posted by smidgen at 12:12 AM on February 5, 2015 [3 favorites]