Do any of you experience seizures concurrent to your fibro symptoms?
I had my first ever seizure today, and I’d like to find out more about keepings myself safe whilest riding.
P, how scary! Are you sure it’s related? YIKES. :eek:
No experience or advice, just thinking of you and sending ‘get well, NO more of THAT!’ prayers your way!
Seizures?!! No.
What type of seizure did you have?
[QUOTE=Bearskin;4603678]
Would Savella be a bette choice? Also, what is “soma?”
.[/QUOTE]
Savella has been in Europe for over 10 years; so there is lots of research in European studies about Savella. In America Savella only has the Fibro indication (it’s the first drug ever brought to market just for Fibro) whereas in Europe it also has a depression indication.
Pain Specialists are finding that a lack of norepinephrine in the brain is the most likely cause of Fibro. Savella is the most norepinephrine specific drug out on the market today. In theory, if there is more norepinephrine in the brain then the pain impulses should subside.
The biggest side effect is some possible nausea but it is dose dependent. It is a weight neutral drug (patients actually lost a few pounds in the trials). Metabolized thru the kidneys not the liver like Cymbalta.
Besides pain relief Savella also was studied using a physical function scale (energy, vitality, fatigue, quality of life, etc.).
Savella is not “scheduled” meaning there are samples available to try.
No, I am not a doctor and am not advocating anyone running to their respective physician(s) to get on this med. I think most doctors are just glad there is something else now they can try their Fibro patients on since it is such a tough disease state to treat.
[QUOTE=Penthilisea;4671583]
Do any of you experience seizures concurrent to your fibro symptoms?
I had my first ever seizure today, and I’d like to find out more about keepings myself safe whilest riding.[/QUOTE]
hmm. The docs wanted to pin the fibro diagnosis on me at one time but it turns out that I have porphyria. Seizures are quite common.
Not everyone with porphyria pees purple. The symptoms can be quite varied since it effects the nervous system.
It can be extremely difficult to diagnose if you have an unusual variant. Which is what I have.
YIKES!
Me, neither, and I never heard of seizures being at all related to Fibro…
Altho if you get on a wierd combination of meds that could certainly do it…some of them lower your siezure threshold.
Or if you are on a new one it could be an adverse reaction…my mom had one to novacaine once.
No, I haven’t had seizures either.
Hope they’re manageable and not serious. Jingles for you!
Tramadol is the culprit. Not the fibro per se, but the meds I was trying in order to not live on narcotics. Scary as all get out- I was helping my boyfriend at his automotive repair shop, and he and his coworker looked over and saw me sliding off my chair.
The only lingering effect so far is that my sense of taste is off and I bruised myself badly fighting against the restraints they put me in en route to the ER. I’m never hobbling a horse again- I know how it feels! 
So no more Tramadol = no more seizures?
Glad you are ok! I’ll never look at that bottle of tramadol the same again…
Tramadol and muscle relaxers can also increase the risk of seizures. It is one of the contraindications. Glad I only took that comb occasionally.
I have a question but some background first.
I have hip and thigh pain that has gone on for couple of years. Sometime better, sometimes worse, driving a long time makes it worse as well as sitting. I also pull muscles and ligaments all the time but never show any swelling or heat and the pain of using said muscle or etc, will have me shaking if I use them too much. Had a shoulder that I had been kicked in as a teenager, that hurt really bad, MRI was great, Xray was great, the GP said it was fine. Otho thought maybe torn cartilage, had cortisone shot, it’s behaved for 6 yrs now. Been to PT for almost all injuries with no really good results.
So 2 yrs I’ve had the hip and thigh pain. Ingored it for the most part. Nothing to see and can not recreate the pain by manually moving the leg as I did go to the DR once. He sent me to PT again. Moved and my husband found a really good massage therapist and she has helped and says I’m a mess. She can never find a stopping point on me as she says everything on me is tight, tight, tight. But I only get to see her once a month due to her being so good. And by the time I go back, I’ve back slid. So, finally make a DR appt.
He did nothing to actually look at my hip and legs. No can you move it this way etc. Did listen well. Only test he did was for inflammatory response? The SED rate can back normal. So no other tests or blood work. He tells me he is leaning toward Fibro. But that would be a hard diagnosis to make on a first visit.
So, here is the question. He prescribe Lyrica and Meloxi-cam.
Would you take the lyrica? I am taking it but kinda nervous as I don’t have all the pain that is described. Yes I’m in a lot of pain and super tired all the time but…I still do everything. I can function through it all. I only crash occasionally and it’s the fatigue that gets me, not the pain. The pain has gotten better but it does on Motrin as well. I feel more tests should be done. Or should I be happy that he is starting with Fibro and going from there?
Sorry for the small novel.
Any suggestions are appreciated. My next appt is on the 5th of Mar. and I do plan to keep taking everything until then.
TIA
Helen
My husband was put on lyrica for back pain, tell me how and what it does for you… I almost left my husband, he is sweet and lyrica turned him into a angry, grumpy man… he got upset and could not tell me why…
At first I thought maybe the pain and stuff had got him down but it just was not him!
He got took off it and was back to his sweet self I will probably never try it, doctors said that happens sometimes with lyrica.
I’m having a really bad day, foggy and close to tears it helps to know I’m not alone… tried to go work my horse 7 times and got too dizzy weak so stayed in bed. I have to work in the morning so hope I’m feeling better!
I also took pain really well, over worked my self, and kept going this has changed my life…
I was in pain for two years after an assault by an inmate on the job. I was doing the Baclofen/tramadol route until some research on the net pointed me in a different direction. This worked for me: Myofacial release by an awesome massage therapist (about 6 visits), dumping all meds, starting Cymbalta. The Cymbalta does not have the weight gain problem that Lyrica has. I was completely out of pain within weeks! I now don’t need the tramadol or the Baclofen UNLESS I re-injure my back (like falling off a horse!). Once the “flair up” is done, I’m as good as new again.
I hope this infor helps someone, it certainly was the answer for me. And yes, I was diagnosed with Fibro.
Good luck and here’s wishing you a pain free future.
Bad Fibro Flare
Hi all -
I’m having a particularly bad flare today. I have been in ‘bed jacket’ (more like a straight-jacket, yikes!) pain all day.
My usual topical of Stop Pain roll on isn’t doing much for me today. I eventually had to take a flexeril (muscle relaxer) and then I gave in and took half a vicodin tonight.
It’s gotta be the weather. High pressure, fog this morning and sunny this afternoon. I am miserable.
No way I go to the barn under these conditions. It isn’t safe for me to drive with the bedjacket pain, and never when I take vicodin (which is one reason I am reluctant to take it).
I also have an arterial condition and when the barometer is high I feel as tho I can’t get any blood to my legs and arms, well, because I can’t!! :no: I get exhausted just walking down the hall.
I should have known it was gonna be one of those days when I woke up this morning to cold white toes. :dead:
Oh well, tomorrow will be better 
At least I no longer have to hold down a job and deal with all this pain and disability at the same time. THAT was truly awful and I “feel” for all of you who must work. 
Hang in there, everyone!
OMG…this is so sad…I cannot believe that so many people suffer from this when it’s curable!! Please go to herbalhealer.com and READ!! I have copied this from their site:
REFLUX, CHRONIC BLOATING, CONSTIPATION, CHRONIC ANEMIA, INFLAMMATORY DISEASE, FIBROMYALGIA, LUPUS (very severe infection), GWS, CHRONIC RASHES, SEBORRHEA, PSORIASIS, CANCERS and a host of other diagnosed ailments are all linked to a systemic (in the blood stream) Fungal - Mycoplasm Infection. Once this infection is in the blood stream, it can affect any organ giving people many different types of symptoms. McCain was able to document this finding using her Live Field Microscopy equipment. In every case above, chronic, systemic candida was found in the blood stream! This infection goes undiagnosed by the medical community and each ailment is treated for symptoms with no hope of any cure. All these ailments above have been helped by the following supplemental protocol.
Candida (fungal infection) can go systemic, into the blood stream and cause joint pain that is often confused with arthritis. Use of antibiotics and chemotherapy the number one cause, but diet, environmental toxins can also play a role in the infection. It can also affect the liver, causing rashes, the kidneys causing severe back pain and poor kidney function, etc. When it’s in the blood stream it can infect anywhere. That is why there are so many ailments tied into this condition. Chronic fungal infection can also deplete the iron in the blood causing low energy and anemia. Leg cramps, twitching legs and general body stiffness is also due to the inflammatory nature of the fungal as well as the fact that it depletes the calcium in the body too. This leads to the cramping. Chronic infection when left untreated gets progressively worse and is always present with Fibromyalgia, Cancer, Lupus, GWS, Gerds, and a host of other misdiagnosed ailments. The following is a long term natural supplement program to help your body detox the chronic infection.
a good friend was cured by an amish man after suffering and being ‘managed’ on steriods for FOUR YEARS:no:!! PLEASE LOOK INTO THIS-there is no need for you to continue to suffer
MassageLady- While we are all glad to hear your friend was cured, I don’t believe all of us have simply never heard of such treatments, nor ignored them. I have certainly tried a similar protocol through a local lyme disease specialist to no avail.
The current medical research suggests that fibromylagia is a change in the way the central nervous system acts, with an overproduction of substance P (detectable in a spinal fluid tap) with resulting changes in the way the brain responds to pain (visible on scans of the brain during painful stimulus as compared to non fibro folks with the same stimulus.)
Be careful with Lyrica too, btw. The max dose is a hard limit, higher will cause … wait for it… seizures! (ask me how I know?)
Lyrica versus Cymbalta? Thinking I need to try one, not sure which one does what for who. Any thoughts?
Another fibro sufferer here. I’ve tried both Lyrica and Cymbalta. I love Cymbalta. Lyrica did not work out for me due to the fluid accumulation in the feet, ankles, lower legs, weight gain and nausea that would not go away. I started with a really low dose, too.
Gosh, you all sound just like me!
Multiple serious injuries over the years, but doctors find nothing really bad that explains why I feel so tired, achey, incredibly sick…I’ve been to more doctors than I can remember, had tons of tests, physical therapy, and tried lots of things, nothing really works, just started on Lyrica, but have the start of a migraine today - vision, head, stomach, yuck! Never had migraines before, could it be the meds? hmmm, will have to keep track. Maybe the Cymbalta would work better.
I’ve been wanting to go to a great holistic doctor in Rochester, NY, Dr, Mary Weiss. She cured my friend’s fiance who although he was young in his 20’s was having heart problems/palpitations, extreme fatigue, just not himself. The conventional doctors just wrote him a script, and finally told him basically it was all in his head. Well, Dr. Weiss found out he had a huge fungal overgrowth in his body that could’ve killed him soon. He almost had to go into the hospital to be on IV’s of metronidizole and other drugs, but luckily pills worked, and he bounced back and is feeling great and very healthy now. I really need to go to her, but my insurance won’t cover her as she’s out of the area…guess I need to bite the bullet and pay for it out of pocket. Years of pain, fatigue, and feeling like I’m dying everyday just aren’t worth it…I want the years I have left to be fun and happy, not sick and tired…
[QUOTE=sonomacounty;4714854]
Another fibro sufferer here. I’ve tried both Lyrica and Cymbalta. I love Cymbalta. Lyrica did not work out for me due to the fluid accumulation in the feet, ankles, lower legs, weight gain and nausea that would not go away. I started with a really low dose, too.[/QUOTE]
I also think they start people out at way too high of a dose. These are hard, hard, hard meds for your body to get used to.
I work in medicine, btw.
When I start (or stop) a new med, (of this sort), I do my own tapering up (and down) of the dose and take a good few weeks to get up to full dose on it. Yep.
That could be why, Artistic. But, Lyrica is just a hard medication for people to tolerate. Do feel better, Hon.
[QUOTE=EqTrainer;4714668]
Lyrica versus Cymbalta? Thinking I need to try one, not sure which one does what for who. Any thoughts?[/QUOTE]
Cymbalta here…works good, but I have to take 120 mg to get the full effect. The only side effect I had at the start was slight stomach ache and loss of appetite<which I wish had stayed that way,LOL> Both side effects went away.
It is like someone “dialed down the pain”.
Yes I do have “flares” at times when the barometer goes nutz, but mostly fatigue, not as much pain.
Let me say, I am very sensitive to meds, so for me to tolerate cymbalta speaks volumes
