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12-10-2014 09:02 PM
12-10-2014 10:07 PM
I have been diagnosed with fibro for almost 20 years now (I brought Duke and Harvard articles to my PCP and she will willing to learn a LOT back then). Honestly, the two things that helped the most was an elimination diet (to see what foods I'm sensitive to) which was corn, dairy, soy, eggs, wheat (I had to eat a lot of root veggies as well). This showed I had flareups with wheat (later confirmed a wheat allergy) and too much dairy.
The second thing (and one that helped the most) was acupuncture. If you have someone knowledgeable (sorry I only know of one in Charlotte), they can really help you get your nerves "aligned".
I take nothing now for the aches save for OTC muscle relaxers, try to reduce stress, and hot showers help, too. Hope you find what works for you as I'm certain everyone's experience is a bit different. (PS I'm only 43 so was diagnosed really young)
12-10-2014 11:08 PM
Electrical zaps and zings? Yes!
I have a question for everyone? My experience - I bought a set of Malden Mills fleece sheets hoping they would get my feet warm. Found I couldn't sleep on them - within an hour had electrical zings running through me to the point I had tremors before I could get out of bed. Anyone else experience something like that? I don't wear polyester, but I've never felt that before.
12-11-2014 01:19 AM
12-11-2014 02:30 PM
How strange about zaps, I've got a wool blanket that I can't sleep with, as it just doesn't make my right leg happy- but now the fleece blanket is a huge awhhhhh... and food, wow I discovered that baby bela and cheese sticks can set me off- isn't that just weird? and the worse of worse for fibro, in my opinion, is sleep deprivation... oh how it raises it's nasty little head and talk about being ragged out for a full morning but I found if I lie down for about 15 and rest, it makes me feel better. I know it isn't funny but how fibro reacts to each of us is bizarre.. I am so glad we have this forum to discuss these things- I know I'm half nuts but things that go on aren't a farce. I told my husband, if you don't believe what's going on with me, please feel free to research fibromyalgia.. OHHHHHHHH I'm doing better with heat/humidity but the cold, well two of our Tennessee games were in the cold at night- it took almost 4 days to get over the eye pain and facial pain.. when we go to Cabela's I'm going to get an orange ski mask,,,, anyone else dealing with symptoms of TMJ? The cold brings that out on me but slowly goes away... and the light sensitivity in my eyes and hearing, I've finally learned how to control that for myself... who knew? Hugs to all of you!!
12-11-2014 08:27 PM
On 12/9/2014 Kachina624 said: First you might inquire as to where the OP lives. Lyme disease doesn't occur everywhere. I've never heard of a case of it in NM.
Yes, lyme IS everywhere. Where have you been? My llmd has people fly in from all over the world with severe cases of lyme.
12-13-2014 12:07 AM
Sleep is CRUCIAL. At one point I was seeing two sleep specialists (don't ask; they knew each other well.)I've never been able to pinpoint a food and having Crohn's disease (in remission) I know how to do elimination diets. But one sleepless night and the next day is useless.
Lyrica and carispodol help me sleep but it's still not always refreshing sleep.
If you do not have access to a sleep specialist and cannot do a sleep test try to work with your primary.
One easy thing I was taught is to take as hot a bath as possible three hours before bedtime to lower the core body temperature. Also I use Epsom salts (magnesium sulfate) to relax my muscles and soothe my skin.
12-13-2014 08:54 AM
12-13-2014 06:56 PM
On 12/10/2014 lavendar said:
I reacted to every SSRI I took but for some reason could tolerate Lyrica.
I am also very drug sensitive.I've used liquid versions when available to get the smallest dose possible and cut tablets into quarters. I'm sure you know the routine.
I'm glad you're seeing a neuro. I've gotten the most help from neurologists (and my still bright rheumy.)
I'm also very proactive. I think those of us who are will ultimately make a difference in understanding this disease or combination of diseases.
Ditto this. I was Dx'd about 15 -20 years ago by a woman rheumatologist. She has now retired, but my other doctors have said I probably do have this, but "there is nothing for it." This was before Lyrica. Perhaps it is time to start seeing a neurologist again... thank you for this information.
12-13-2014 07:02 PM
eye sensitivity to light -- check
hand and muscle pain that worsens w/cold -- check
funny, break-out skin -- check
thyroid tests normal -- check (over and over and over again)
all the other weird stuff -- check
IBS -- check (and GERD, etc)
None of the symptoms really seem to be brought on by anything in particular... they seem to "hit" out of the blue. However, what I eat/don't eat seems to trigger symptoms
Started eliminating food during weight watchers sessions, when there didn't seem to be ANYTHING I could eat and remain in the low points!
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