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Severe Chills Precursor to FB Flare
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Moxie1956 posted:
I'm curious to know if any one else experiences severe chills as a precursor to a FB flare-up. Even during the summer, I discovered if I began to feel cold, I'd better take swift action bc if I didn't, I would have a flare-up. Now, that it is Nov in NC, it's a bit nippy outside, but I live in a well-insulated home. Nonetheless, I have experienced severe chills---feet and hands are like ice cubes, rest of body feels internally cold and I shiver---and then a flare-up. Last nite I had pj's on, put on a snugglie (yeah, like the ones they sell on tv), laid on a full body massager with heat, covered with comforter, small space heater on hi 80 degrees, and my central heat was on. After about an hour, I began to settle down, warm up, and then began to peel the layers away. But, alas, there was the familiar pain. As I sit here at the computer, I am slightly chilled, can feel my icy toes even tho' I'm wearing socks, and my central heat is on at 72 degrees. It shouldn't be on bc it's a beautiful, sunny, mild day. I have a second curiosity: I've been on Tramadol for pain relief for at least 2 years. It now has virtually no effect. I mentioned this to my primary care doc, who recommended I take 2 Tramadols and 2 extra strength Tylenols, the combo seeming to work together better than just Tramadol alone. I've been doing that, but to no avail. Doc mentioned that if I stop Tramadol, I would have to begin a narcotic. Has anyone a similar experience and made an effective change in pain meds? Thanks.
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cinndot responded:
If I get a chill, it's all over. I know the rest of the day is going to be a pain day. I try to warm myself as fast as I can and sometimes it helps. Hang in there.
 
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angelldakota responded:
I don't get chilled easy... I love the cold... but as of lately when I do feel chilled it is flair time... I was also wondering if I was imagining things or if anyone else had this problem...

I can get chilled when it is 90 degrees outside yet... yet I can open the door at 58 degrees in the morning and not freeze... I just don't make sence.. lol...

this whole thing hasn't made much sence lately... but I am tired of it all and tired of the unpredictabilty so I just punt... lol...

hope you feel better... bless you...
 
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Wolfsong452 responded:
oh man,

don't tell me this is a symptom.

I've also been having cold chills,

I'd gone to my doctor who was telling me they thought it was due to menopause. Or, maybe an low iron. She also is checking my vitamin "D" again. Doctor was also telling me, hey, it is getting cold outside, sheesh!

I'm the one who used to love the cold, go barefoot everywhere, no socks with my shoes in the winter time.

bah humbug!

I'm also working on the doctor to give me something else for the pain. This darn doctor is a stickler for EXERCISE. yeah, I know it can help, but darn it, I HURT!
 
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Moxie1956 responded:
I am almost relieved that others are experiencing cold chills bc I was beginning to question myself! I am in menopause, after a 10yr peri-menopause! I've always hated the cold, but even while I lived in HI for 20yrs, I got chilled and I would hurt, but I had no idea it was fb. It was only 2yrs ago that I was diagnosed with fb and CMP. My dr seems to be quite balanced in his advice, both meds and exercise, and he checks my lab work every 4mos, always pretty good. It's weird bc I was too warm a few nites ago and couldn't sleep. So at 2:30a.m. I went outside and enjoyed the blast of 45 degrees, only for about 5 min, but still it helped somehow. This is the strangest journey I've ever been on. Thanks for replying to my post. And I really do wish you a pain-free weekend!
 
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Moxie1956 responded:
So, I'm not alone. I'm sorry you suffer also. I offer WARM wishes to you!
 
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Moxie1956 responded:
ditto, angelldakota! Punt...that's funny! ditto again
 
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fibroinsd responded:
yes...I have been chili and achy today...and I live in California..

About the medicines....I hope one of our more medically inclined will see this. I am never good about the whole meds thing...but there are other meds for FM, including Lyrica, Cymbalta and Savelle. I think you need to do some reading about meds for FM. There are other meds than those I mentioned...but those are for a start.. I am on Cymbalta, and it works pretty good for me, but I know others here that can't use it. We all seem to be on different meds.

Hope you can find some useful information here.

cece
 
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Tuned2fm responded:
Yep, when the severe chills come I always know there is a flare just around the corner. I stay chilly especially in air conditioned places during the summer, and I do get some stares because I wear a light sweater almost all the time in the summer. I have found when it is really bad that a hot shower or bath then layering clothes and blankets and using the space heater as soon as I get that cold can stave off the really bad flares.

It's 50 degrees outsided and I am indoors with 2 sweaters, a top, jeans, socks and shoes and I am practically freezing. Last year was bad but I was able to avoid going out as much as possible, but I feel I am going to have a really hard time this year as I have already spent the summer feeling cold. 90 degrees sounds great to me!

Also, I was taking Celexa and 5/325 mg of percocet for pain and when the dr put me on oxycontin( after trying Cymbalta unsuccessfully) and it does help take the edge off most days. I know a lot of people are afraid of opiates but when taken as perscribed, they can be helpful. Its the ones that abuse it that gives this form of treatment a bad name. Alot of drs think opiates do not help the pain of fm but I have read about many people that are helped by them. If you research and speak candidily with your dr he should at least let you try one of the meds available such as Percocet starting with a low dosage.

Before you "step up" to narcotics make sure you research any meds he may want to put you on and if you do choose to use them follow dosing directions to the "T" and you should not have a problem. And don't discontinue without drs assistance.

Well, I am rambling so stay warm and I hope you find the right pain solution that best suits you.

Sheila
 
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143Pookie responded:
So far the only drug that has worked for me is percocet. it's hard because after 8 years of being on it, your body does become dependent. At least my pain doctor realises the difference between 'physical dependency' and 'mental dependency'. I also used to be immune to the cold and have relized I no longer am.

I hope you have a wonderful day and find what works for you as it is a struggle to find the right combination!

M
 
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FloridaGal2885 responded:
Hi,

I have the chills, too. It always feels like I'm coming down with the flu, but I know it's the beginning of a flare. As for the Tramadol, I've been on it since last spring (2x daily with Tylenol) and it's never done more than take the edge off the pain. When the pain is really bad, I'll take one in the middle of the day, but then I can't drive or do anything else because it makes me so drowsy. I guess that's better than being in pain!

Hugs, Bebe
 
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aberlaine9 responded:
I'm very sensitive to temperature changes. I never connected being chilled to the bone to getting a fibro flare. I'll have to watch when I get my next chill.

I've been taking Cymbalta for about four years now. I had been at 60 mg, but my doctor increased me to 90 mg in July. I think it's taking care of most of my fibro pain.

I've also been taking Ultracet, which is tramadol plus Tylenol. I don't think it's working as well as it used to. But now I'm using it for arthritis pain and I take one before I get out of bed. It's the only pain med I have that doesn't have to be taken with food.

As for sleeping, I'm trying something someone recommended: 25 mg of amitriptyaline and 10 mg Flexeril an hour before bed time. I get good, restful sleep and don't wake up feeling hung over.

Keep warm everyone! Nancy R.
 
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jo388 responded:
Hi Moxie,

I just wrote a big long reply and I lost it! So, I'll try this again! I also get chills sometimes before a flare up. I live in FL, so it's hot here most of the time. Sometimes, I will go to bed just shivering, with socks on, blanket on...and then have to start peeling it off. Next thing you know, I'm in a flare up.

I didn't take Tramadol long. For some reason, it gave me terrible nightmares. I don't even remember dreaming most nights, but with that, I would have these awful nightmares. I was given Tramadol and was already on pain meds due to other pain before I developed fibromyalgia. (I had pain from an injury from a car accident). Now I have increased the Lyrica to 100 mgs three times a day, in addition to the pain meds and this seems to work better for me. However, I never feel good, so that's not saying a whole lot! I hurt all the time, the fibromyalgia is just an additional problem.

Best wishes in finding what works best for you. It is certainly a challenge.

Jo
 
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Moxie1956 responded:
Everyone of you who has replied to my post I am most appreciative to. As I mentioned to one, I am not glad to find out others share this particular symptom; I'm only glad about not being muddled minded, as I've come to call it, or that "I'm the only one." The suggestion about a hot shower before bundling up makes a lot of sense, but I'm usually too far gone to take that as an initial step! Maybe if I become even more aware (I already feel like I am body obsessed!), I can fit that shower in beforehand. Regarding meds: Presently, I am on Gabapentin, 1800mgs daily, which was 1st prescribed by my neurologist because of chronic migraines, bc Gab is a "preventive" med, rather than an "abortive" med. But, it was determined by my primary care and psychiatrist (who monitors all of my meds intake), that Gab is also great for fb! So, they will not ween me from it to put me on Cymbalta, or Lyrica, or anything else. The collective belief is I am best off with Gab. I am allergic to Percoset. Of course, I am NOT a med professional, but let me throw this experience out there for any one who might benefit. When I was first diagnosed with fb by my rheumatologist , she prescribed Tizanidine. I don't recall the initial dosage, but when it appeared not to be doing any good, it was upped to the next higher dosage. I was told I would have to adjust for about 3-7 days. Well, this thing knocked me out of reality. I spent 24/7 in bed, hallucinating!! I kid you not---I heard voices, I talked incessantly "in my sleep" and yet felt like I wasn't getting any sleep at all; I grabbed things out of the air, etc. My family witnessed these things and didn't know what to make of it (mental illness runs strong in my family, and I think they feared the worst). After one month of attempting to adjust (yes, I know, stupid on my part!), there was a sliver of reality and I put a call into the doc. When she called, she told me to begin an immediate, accelerated weaning process, which resulted in being off the drug within 4 days! She agreed with the neurologist to continue the Gabapentin for both fb and migraines. I only give this account bc I don't want anyone to go thru the nightmare I and my family did. My rheum doc had never heard of such side effects with Tizanidine, not even in the professional papers. So just be aware!! And, please, for heaven's sakes, do not hallucinate for a month!!! I see my neuro and rheum at the end of this month and we will be considering my options. Thank you all for your wonderful and kindhearted responses. I am off to take that hot shower but only bc my daughter is going to treat me to "The Christmas Carol" with Jim Carrey. I was too sick to go on Sat, Plan A, and on Sun, Plan B, so now this is Mon, Plan C! If you do not succeed at first, try, try, try, try, try again!!! Warm wishes,
 
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tygrlly responded:
Hi Moxie;

I always feel yucky chills before the onset of a flare. I had knee replacement surgery in Oct and was doing phenomonally great; easily keeping up with the PT and my surgeon was amazed at how quickly I regained full strength...(Making both of us wonder if fibro dx was even accurate!) My optimism was rewarded by a horrendous flare that came on the week before Thanksgiving after a week of 3-4 blankets, hot tea, and walking the halls at work to try and get warmer... I am sorry and scared to say it is still with me (welcome winter in Wisconsin!) . It is really scaring me...I will be seeing my neurologist in 2 weeks...this pain is deep and achy and ALL OVER. My normal "big guns" aren't working this time (Soma, ultram, Robaxin and Ibuprofen). Has anyone else had a horrible flare like this? I rejoined the gym and am starting on Nutrasystem next week (gained 70 pounds in 2000 when diagnosed with fibro..followed by hypothyroidism, IBS and prediabetes). I try to keep fighting but it's so hard when you don't know what the next hour will bring.....Sending all my fibro sibs a big hug.....we need the encouragement from each other..Keep the faith. tygrlly


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