Living With BFS & Chronic Knees

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ilovemychi

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I have been living with BFS for 4 years now and it still drives me crazy to this very day. I'm a constant twitcher in every part of my body, twitching at least once every 5 seconds. And I've also been dealing with chronic knee problems for 6 years now and I'm only 21 years old. In my search to relieve my debilitating nerve pain that is in my knees 24/7 my doctor prescribed a new drug for my called Lyrica. It is used for the treatment of people with nerve pain like myself, but also is used with other medicines for people with seizure disorders. Not only did it completely relieve my knee pain 100% but it got rid of my twitches COMPLETELY! It was like I was a new woman! If you have hit a wall like I did when it came to my BFS symptoms and did just about everything and nothing worked, I would talk to your doc about this and see if it is right for you. I do stress to everyone though that they consult a physician and try alternative therapies before committing to a prescription medicine. There are risks involved and you must weigh the benifits against the dangers. I am currently off the medicine since I am 6 months pregnant but after I deliever I am going back on to get much needed relief from my knee pain and constant twitching. When I first started taking the medicine I had no idea it would get rid of my twitching, but I was pleasently suprised to find that it did 100%. If anyone has any other questions to ask me feel free. Hope this bit of info helps.

PS: When I first started taking Lyrica at the lowest dose possible I was very drowsy and slept all the time and felt spaced out all day. In doing some research on th drug I found that by increasing the dose actually gets rid of all of those unpleasant side effects completely. I almost went off the drug because I couldn't stand being so out of my mind all the time, but I slowly increased my dose to 200mg 2 times a day and bam, no side effects whatsoever (except the no knee pain and twitching!). So if you go on this drug and can't tolerate the fuzzy side effects, don't give up too soon. Talk with your doc and ONLY if they okay the increase do so and see what happens. :D)
 
I've been on Lyrica for a month and a half or so. I first thought that it was helping with the twitches but suspect now that I was so spaced out, I just wasn't noticing them as much. My legs felt kind of rubbery (legs are my main twitch annoyance) and I felt foggy, but in a kind of good way. It is hard to describe. I didn't drive for the first few days because I felt impaired, but then became used to the drug. I am only on 150 mg twice daily and unfortunately, the twitches have returned full-force, especially if I exercise. I also have some chronic pain/aching from the knees down, but Lyrica has not seemed to help that.

At this point I don't know whether to stay on till my next neuro visit in 2.5 months. I have heard of people having their twitching disappear permanently on this drug and of course that is what I was hoping for myself.
 
Thanks for your post .... I took Lyrica for about a month and my dosage was around 100mg ....50 in the morning 50 at night. I too was catatonic, tired all the time, dizzy spells, but had some relief from pain and stiffness yet only minor relief from twitching. Perhaps, increasing the dosage might work??? I'll have to discuss with my neuro. I was disappointed to read after stopping Lyrica for your pregnancy your symptoms are back. My neuro gave me the impression that he has many patients whose symptoms go away after successful treatment with anti-seizure meds and that taking the drugs wasn't a lifetime sentence. Lots of things to consider before my next visit. How have your symptoms been during your pregnancy? My husband and I would like to have another baby but not sure I could tolerate the constant muscle pain.

Georgeann
 
My symptoms have returned back to my pre-Lyrica state after I was off the drug for about a month. BFS doesn't cause me any pain, my knees are a totally different thing. I twitch constantly all over my body about once every 5 seconds. I have too heard that some people experience total relief from their BFS symptoms once they have successfully completed treatment of Lyrica. I didn't fully complete my treatment with the medicine since I ended up with a surprise pregnancy (but very much wanted!), so I believe that after I deliver and go back on the med for more time that it will help more in the long run. At one point during the treatment I was on 300mg 3 times a day, but settled on 200mg twice a day since both doses worked the same for me. I would suggest not giving up on Lyrica just yet. There are many different strengths you can experiment with under your doctors guidance, as well as taking it 3 times a day instead of 2. I was the first patient my doctor prescribed Lyrica to and telling her my experiences with it has benefited a lot of her other patients whom she now prescribes the drug to. Lots and lots of people experience unpleasant side effect at the lower and less frequent doses but find that it totally works for them at higher doses taken more frequently. Talk with your doctor and see what they say. Hang in there. :)
 
My neuro told me during my last vist there are about 5 medications that can be used to treat benign fasiculations however none of them will cure the underlying cause. They can be used if the twitching is really bothersome but they will return once the medication is stopped. He compared it to taking Tylenol.

Swift_TaySwift20
 
Ryanbabs,

They are various antibody tests. Two that I remember are Anti Yo and Anti Ri (whatever that means). I unfortunately did not write them down so I cannot tell you the rest. But the lab sends a person to draw the blood at your home because it is time sensitive. And they cost a fortune. I think even after insurance I will be left with over $500.00 to pay. Not happy about that, but I will be very happy if they are negative.

By the way, although twitching can occur as a paraneoplastic symptom, it is rare. I have an elevated sed rate (6 years now) and no other explanation for the twitching and other symptoms so I won't rest until I have eliminated bad causes from my thinking.
 
Iluv-

I'm glad to hear your neuro had cases that went into remission after treatment with Lyrica. I'll definately talk to my neuro about the dosage at my next apt in a couple weeks.

My neuro says they don't have scientific research to explain BFS or BCFS. However, they believe it is caused by an autoimmune dysfunction where you once had a virus that created antibodies and for some unknown reason the antibodies later go bizerk and start to attack the pottasium/sodium channel in the nerves causing many of the symptoms I was complaining about (twitching, nerve pain, soreness/stiff muscles, restless sleep, pins and needles etc) My EMG basically confirmed that my muscles fire electrical signals (twitch) while totally at rest. After almost a year of my primary doc treating me like a hypochondriac it was a relief to find a doctor that understood this condition :D)

The past few days without meds my pain has been managable just stiff and sore like RA not shooting, sharp pain or even spasms when I'm in a flare up. The twitching is a constant.....but hey I'm getting used to that. It's easy to forgo meds when you're not in pain but *beep* when the twitches are causing pains and spasms etc totally different scenario.

Sorry to hear about your knee pain but wonderful news about your baby. My life has been blessed by my son and hopefully will get relief from our pain soon :D)
 
Hi iluvmychihuahua!

Yes..75/75. I've had two doses, one last night and one this morning. So far...spacey...sleepy are definate! You say it can be increased? Is this an Rx that needs to be increased slowly...like some anti-depressants? I wouldn't mind trying the higher dose, and my doctor is great...he would let me experiment with the dosage. I would have to go 150 in the AM and 150 in PM. Because of the Rx being in 75mg.

Anyway...Yes...I am spacey/foggy/sleepy.

Twitches? I've still got a few but that's probably to be expected for a few days.

One thing that is different is the FLINCHING!!! I flinched before but it seems worse.

I had a few heart flutters (but I do that...might not be related to Rx).

I'll post again soon to let people know how it's going.

Patricia

PS...iluv...how is the pregnancy?
 
Sorry to hear about the sleepy/spacy feelings. Hopefully those will go away soon, and if not then talk to your doc about an increase in dosage. I don't know if Lyrica has to be increased slowly or not, but I would recommend doing so to make sure you find the dose that is perfect for you with the least amount of side effects. Interestingly enough I have heart flutters too, something unrelated to the medicine but it seemed like I noticed them more when I was on it. I don't think they increased because of it, I just think I was more aware of it for some reason. I don't remember anything about flinching though, never had a problem with that. As for me I've got 3 months to go until my due date, and boy can I hardly wait! Not that I want her to come early or anything like that, I just will be glad when she gets here. I've only gained 10lbs so far, but my Belly is massive. The Belly runs the show in our house now... what The Belly wants, The Belly gets! Lol! Any ways, keep us posted on how your doing. I really hope this works for you and it's really cool that you've got a great doc that is on board!
 
Ok...I'm now taking 225mg in the morning and 225mg at night. The doctor gave me 75mg caps. so I take 3 of them. Anyway...I don't have any twitching or spasms but now I have terrible flinching! I'm also still VERY sleepy!

Luvmychihuahua...how long did it take for this side effect to go away? I think I've been on the higher dose now for 3 days?

It really is helping with the twithing/spasms.

Patrcia
 
Today I'm having HUGE flinching. It's awful! I was talking to a friend on the phone and flinched big enough to toss the phone. This flinching is NOT ok. I need to know if it's part of the bfs or the Rx. I had some flinching before, but not like this.

I've also noticed some water retention in my feet, hands and eyelids. And sadly to say I've gotten a some spasms too.

My neighbor gave me some Lasix till I can talk to the doctor tomorrow.

It's kind of weird because when I first started the Rx I had this spasm thing going at the base of my back. In fact the stupid spasm caused me to have sciatica! Well...it got rid of that spasm...Yay...but I'm having one in the back of my thigh. Uugh. Also in the arch of my left foot.

I use 1000mg calcium and 500mg of magnesium for the spasms for the past 2 years and it is a miracle! With it I have BFS, without it I have BCFS.

My hands are also shakey. It is hard to grasp things lightly.

I'm using this forum kind of like a journal and not as a *beep* session about the drug.

Thank you Iluvmychihuahua for your help. I appreciate it.

Patricia
 
Ok...retaining some water...but doctor reassured me it should go away. I've dropped back to 150mg am/150 pm and started taking tegretol twice a day (100mg each). I've taken tegretol before and while it helped with bfcs it never completely stopped it. I was taking 200 twice a day.

I still get a little lethargic but it doesn't seem to be as bad as it was in the beginning. I've noticed that the cramp part of it is a little worse in the past 24 hours and I'm wondering if it's because I've started riding my bike. I'm able to think a little more clear.

This is whats going on today...more later.

Patricia
 
Hello...thanks for the information about trileptal and topomax. I'm so sick of the side effects of Rx drugs. I am intrested in persuing more natural things.

I have an appointment with radiology tomorrow to have a bone scan. They think I broke my foot...a year ago? Anyway...I'm in pain and I'm so tired of it.

Patricia
 
I wanted to give an update on Lyrica. Hopefully this info is helpful to somebody.

The Neurologist I am working with is pretty conservative with his approach. Which is OK with me. As I have written before he has had BFS in his calves for 25 years. His preferred treatment is just to live with it.

Anyway he had me taking Lyrica 50 mg before I sleep for 30 days. No change that I am aware of. I saw him today and we are doubling the dosage to 50 mg in the morning and 50 mg at night.

I took one this morning. No change so far.

He tells me he is willing to go up to 150 mg a day by taking 75 mg morning and evening. He and I will work up to this in the next month or two.

On a side bar, my new hobbie is seeing doctor's. So I see this Neurologist once a month. I always wanted a hobbie.

Lyrica did make me a little drowsy but this symptom seemed to get better after a week or so. So if you are just starting on Lyrica you might want to give it some time.

However once I had a glass of wine and it made me pretty woozie.

I am 6'5" 200 lbs. So I wouldn't think a glass of wine was a big deal. But I rarely drink, so my body has zero tolerence. Maybe this is just co-incidence.

But my recommendation to anybody who is taking any of the meds. You probably need to give up alcohol.

I hope somebody finds this information useful. I certainly appreciate everyone else's posts.

Cheers.
-43RichyThe43rd
 

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