Interesting to note that some people with Lyme are having considerable success using Lithium Orotate for sensitivity to light and general "buzzing". You need to really push the envelope to find help these days and you do have to be your own advocate and research, research, research.
I have had fibromyalgia for years. Meds always had bad side effects so I stopped taking them. My chiro challenged me to try a no sugar diet for 4 weeks. What an amazing difference it made. Almost all of my symptoms were gone, or at least manageable. I walk everyday and drink lots of water. What you eat and drink make a huge impact on your fibromyalgia. Sugar, alcohol and nicotine are to be avoided. Hope you feel better soon.
For me it was gluten. And sugar affects me too. As does dairy. But gluten is the absolute evil for me. The other stuff just adds to it. Now 98% of the symptoms are gone and the cold weather stuff is completely gone.
Long term fibro sufferer here.
IMO (and I work in medicine) Drs. really should be tapering people up to doses of a medication when they first start. I'm a huge believer of tapering up to a dose, until you get used to the medication. (And tapering down when coming off one). Avoids lots & lots of problems. I start out with 1/4 of anything they prescribe & increase over a month or two, or more.
(And Drs. often prescribe without telling people that the medications may take some getting used to, then the side effects may go away.)
For me, Ultram is a life saver. I can only take half an Ultram and then I bolster it with two Tylenol. A full Ultram would make me feel sick and I've been taking Ultram for years. I found many of the Ultram side effects go away after you get used to the medication, by taking a small (I'd do just !/4 of a tab) for the first few months.
I also like/have used:
Cymbalta (again, I'd taper up to it)
zanaflex (for muscle spasms) (another taper up to it)
Corvalen-M (a fibro website recommended it)
Triple magnesium pills from GNC for when things are cramping & burning
hot patches from the drug store (Icy Hot, etc.)
Feel better, all. It's a hard, hard road.
Question for the fellow fibros:
Do any of you start feeling sick/bothered from:
really sunny days
All of those are such bad news for me.
I do best in the fall & winter. You?
absolutely! All of the above. I acutally prefer cooler weather. In addition, the het seems to really make me hurt more.
Sjogrens is the disease you were trying to remember. It is a form of arthritis but hits the salivary glands, eyes and lymph nodes can turn into lupus and other diseases. Must have a biopsy of your mouth to confirm. It is also painful to the joints. They treat with medications to help your eyes to stay lubricated, as well as some other specific drugs along with keeping joint pain in check
Former lurker finally joined :)
I have had this monster since 1997 and being told it was in my head for 5 years and until last year under treated for it. Alot of damage done now :(
One thing I use that works well enough for me to function at work is Valley Naturals Aches and Pains at WalMart I keep 2 bottles on hand. Takes a couple of days of use to really see a difference but it works.
My arms and legs are weakened due to pushing myself *had no choice* too far but horse back riding a half hour helps relax the muscles (will get another farm soon so I can ride, there is too much speedy idiot drivers and a cougar den near my girls) so the doctor actually ordered a half hour of riding or just simple quiet time with my horses. Best medicine!
I am on Lyrica, Cymbalta. Para Fon (muscle relaxer), mirapex for the restless legs
As we used to say on one Fibro board. Soft hugs!!!
Yes to many of these on bad days.
I cannot stand bright lights, certain noises.
Spring and Fall are my better times, although last summer I did rather well.
I cannot put ice on my body it kills me, heat works best for me and the headaches OMG I miss at least one day a month from work from it.
Valley Naturals Aches and Pains at WalMart?
Hello Wildheart ! Welcome fellow horseman & fibro sufferer !
What is in the above that you mentioned? Ooohh, a new potion I can try. I've tried most of them.
Do you have a prescription headache pill? I take Esgic Plus, it's Great !
Soft hugs to you, also.
I had to go check and verify the name, my B12 deficiency and my Fibro Fog is horrid.
Hope this is okay to post if not the mods can remove it for me
My doctor refuses to put me on any pain meds he wants me to get the shots, but I can't take a whole day off for that so I suffer onwards. I take migraine meds for any headache.
I have been on most of the meds they tell me so they classified me as Chronic Fibromyalgia. Nice eh
I find a close relationship with my hot water bottle and heating pad LOL
Where can you find that medicine you take? Is that a prescription?
Thanks Wildhearted. So, the Valley Naturals is a bath soak? I love eucalyptus !
Esgic Plus is a prescription headache medicine. The over the counters do nothing for me when I've got a bad one.
My doctor refuses to put me on any pain meds he wants me to get the shots.
I love how they can say that when they are not paying your bills for you. Well, hey, it's not Them who's in pain, so they can say that ! (Oh, if the shoes were on their feet.) I'd love to not medicate but for me, I barely get by with medication. I'm not advocating pain meds but for me - no meds - no workie. That wouldn't help the mortgage any.
B12, yes, fine, but I'd get a different doctor, JMO, he's no help, nor is he sympathetic to you.
Do you take both Lyrica & Cymbalta? Maybe another muscle relaxer might be easier for you to handle (tend to produce less fog). Some of the fibro meds can also cause some fog.
Soft hugs to you, too.
The Lyrica and Cymbalta are the only things that don't have bad side effects for me or fails to work.
I am considering a new doctor yet again
PS yes a soak I want to try the other healing stuff they have but WalMart only carries the Aches and Pains here
Now, not to be a pain, Wildheart, but each day - do you take both Lyrica & Cybalta? If so, interesting !
You know, people (& some Doctors) say how pain killers are not good and the Drs. shouldn't prescribe . . . And it's all over the media.
Yes, but how about, if I couldn't I'd surely loose my job, get excessively depressed (then meds for that ?), need to apply for public assistance and it would spiral down from there. Oh, they ---- me off when they don't think the pain is huge and real.
What I do for pain meds is no big deal actually - 1/2 a 25 mg. Ultram and 2 tylenol about 3 times a day. It's not great but I get by with it.
Uuuggh, it's summer now - a fibro nightmare for me.
The only pain med that worked for me was taken off the market, Darvacet. I just take OTC pain meds which don't do enough.
I take both Lyrica and Cymbalta yep but until finances get better I can only take them as needed, I do have discounted pharmacy with my insurance which I have to re up every 6 months in order to have decent insurance.
My job is classified part time and since this is a pre existing condition this insurance was the best I could get. I don't get any benefits working for a 501c place.
I just deal with most of the pain and it can cause me a day or two off work a month. With my age 42 I figure hormones isn't helping.
My sister and her one son both have Fibro and she can barely handle Lyrica, gives her the lyrica loopies LOL
I haven't been diagnosed with fibromyalgia (as of yet), but I'm in a similar situation as far as bloodwork.
I just had some of the same tests done (for sudden onset severe join pain - just when I was almost able to ride again after a concussion!). Negative for lyme and other tick-borne diseases, with RA unlikely. My ANA has been slightly high before (and was again this past time). IN MY CASE, my doctor wasn't too worried, saying that a positive at a low level wasn't uncommon for patients with Chronic Fatigue Syndrome and that we would keep an eye on it. This may not be the case for you (ask your doc), but it's a thought.
Besides Ehlers-Danlos, you might also look into POTS (postural orthostatic tachycardia syndrome), I don't know if any of your symptoms match but thought I'd bring it up as POTS has been associated with both Fibro and E-D (lucky me ... not).
Hope you figure it out soon!