BFS with 'Cramps': Symptoms

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Christi888

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Lately--my fasics and myoclonus have seemed to desrease a bit--but, I'm getting a lot of cramping! :( Not real painful cramps...just a 'tightness'---& some mild pain....everywhere from my feet to my neck-!So--I guess I have the BFCS....(BFS with 'cramps')--! :rolleyes: Now...I have been experiencing a feeling a 'soreness'...in my rib cage & sometimes lower back muscles!Not...sore to the 'touch'...but the kind of soreness you feel after a workout!In fact....the pain feels very similar to what my cousin describes....when she talks about her fibromyalgia! :unsure: Is it possible..or likely.,...that along with my BFCS..I have 'fibromyalgia"? :unsure: Do they ever "co-exist"? or have similar etiologies?I am having a blood test on Wednesday--my cardiologist wants to check my lipids....since i stopped taking lipitor about 6 weeks ago--So--he ordered a "lipids"...test AND "hepatic function"...(to check liver)---now--as I am seeing my GP tomorrow....are there any other "blood studies"...you think I might suggest? Are there any 'blood tests"...for fibro---(any enzymes that are elevated w fibro?)--Please--no suggestions for "Lyme disease"...never bitten by a tick and no big rashes! :LOL: Since I'm having blood drawn..I may as well have any other relevant tests done-! ;) Does anyone else here have both BFS..(or BFCS)..AND fibro--? Thanks---regards--Christian- :)
 
Has anyone suggested that lipitor may be the cause of your new symptoms? I know someone who has similar symptoms and his doctors blame lipitor. Also, several neuros asked me if I took statins when I met with them about my symptoms. I did not take statins so that was not a possibility for me.I know that some people with Fibromyalgia complain of muscle twitching. Fibromyalgia however is a condition that is not fully accepted by all doctors and there is no definitive test for it.
 
Creatine kinase, if you haven't had that checked yet, also all white blood cell counts and sed rate. - just to see if you may have any kind of infection. And maybe LDH - may point to a hidden cancer, but maybe not.I am no MD. Good luck man.
 
Running Bear--Are you 'jerking' me around? Checking for a "hidden cancer"? This site is for support & reaaurance re: BFS-!And you're telling me about being tested for "hidden cancers"-! :eek: I'm talking "fibromyalgia"....you're coming back w cancer!Anyway...tho I'm no Dr. (I did start out in University as pre-Med before switching to History/English)---I do know that LDH....is a "Liver enzyme"....(Of which I'm getting a "hepatic panel")--& is NOT a "cancer marker"-! Man...talkin' about a "profit of doom"-! :mad: -----------------------------------------------------------------------------Also---to Krackersones----Re: Lipitor---if you read my post you'll see I STOPPED taking Lipitor......over 6 weeks ago-!Anyone else.....who can suggest something..... re: blood test? :D)
 
Running Bear--No worries for me regarding HIV....& Syphyllis--! :) Lord only knows what you did for these Drs....to test you for these 2 ACQUIRED...diseases! :oops: So--I guess i'll only have about 18 vials drawn-! :LOL:
 
Sorry, Maria--and poster'Did not intend to come across as,..."harsh" :( -- Just wanted her to know, that i had stopped taking the Lipitor, awhile ago-! ;) Anyway---still wanna know if anyone has BFS and Fibromyalgia :confused: Christian
 
A lot of people think that BFS and Fibromyalgia are the same thing, just on a different scale. I am one of them. I consider the BFS/Fibro scale to be much like the autism spectrum. Some cases are just more advanced and debilitating than others. In fact in the big picture I think we BFS sufferers are actually the lucky ones.
 
Dear Mario--Thank you so much for your succinct & cogent answers! Very insightful-! :) Whenever I post---I always wait for your answers! I taught HS for 15 yrs...& I know...bright peoplw...when i see them! (Or read them)-Reflecting on what you just wrote--I think you maybe...onto something! ;) Regards---Christian
 
Christian,Regarding Lipitor, have you mentioned a possible link between Lipitor and your symptoms with a doctor that did not prescribe it? I do not believe that the problems it causes immediately cease upon discontinuing the medication as that is not the experience with the person I know of who has neuromuscular issues from the drug. If the drug effects your muscles and/or nerves in some way, the problem could surface after stopping if the time between the two is weeks rather than many months or years. I base this on the questions I was asked by neuros about statin use. They wanted to know if I was taking them and if I ever had. If your problems have some connection with the drug, this is a good thing because knowing the cause gives you power over and a basis for predicting the future. To this day, I would love to have some basis to connect my symptoms to something concrete. The unknown part is the worst.Krackersones
 
I originally thought I had Fibro,but due to the variations in symptons and intensity of said symptoms, came to the conclusion it was probably more likely BFS..but at the end of the day..who is to know! cheersrodger
 
Hi Krackersones-Thanks for your caring thoughts & advice.In the regard of "Lipitor"- yes, I did mention it to both my neuros-Neither felt it was a cause- Lipitor tends to cause muscle aches & pains....& joints as well--Anyway--i've been off it nearly 2 months now...so, it's outta my system-btw--I did not intend to come across as harsh in any way---if I did, please accept my apologies! :) ----------- To "Aussie sufferer"...you 'hit the nail on the head'...in that---what you said...is EXACTLY...how I feel--! ;) It is the fear of the unknown,....that bothers...& scares me the most!Aside from my myoclounus...fasics....& cramps....I also have muscle soreness--like a "fibromyalgia"--& I abide by the..."Mario Mangler" theory,....that BFS....& fibro....may be on the same....."continuim"--! I really do appreciate all the feedback-- :D) Kindest regards--Christian
 
Christian, your apology is accepted though I was not too offended. I fully understand the frustrations of trying to figure these symptoms out.
 
Morzani-You have Fibromyalgia too-? :rolleyes: I think...Mario Mangler may just be a...........medical savant! ;) (w his BFS/fibro continuim...theory) :cool: How do I get Dx....if I have Fibromyalgia or not? I often have sore muscles---feels like i just worked out! (Even tho i have not)Whaddya think...Mario? (btw...I DO find magnesium helps with my irregular heartbeats. :D) ...but not with my myoclonus/fasics-- :( Just got back from my 4th session with my acupunturist! An wonderful....elderly Dr. from China! He has an MD-I went in....with some 'reservations'...(my wife suggested I give it a try)---& my gosh..it has helped! :D) Acupunture has been around....5,000 years! There's gotta be something to it! ;)
 
Morzani-You have Fibromyalgia too-? :rolleyes: I think...Mario Mangler may just be a...........medical savant! :! ;) (w his BFS/fibro continuim...theory) How do I get Dx....if I have Fibromyalgia or not? I often have sore muscles---feels like i just worked out! (Even tho i have not) Whaddya think...Mario? (btw...I DO find magnesium helps with my irregular heartbeats. :D) ...but not with my myoclonus/fasics- :( Just got back from my 4th session with my acupunturist! An wonderful....elderly Dr. from China! He has an MD- I went in....with some 'reservations'...(my wife suggested I give it a try)---& my gosh..it has helped! :D) Acupunture has been around....5,000 years! There's gotta be something to it! ;)
 
Good point Mario--I never did worry about that freckle on my butt! :LOL: And...that's most noble of you giving credit to Alonzo-!And..to Krackersones--Thank you for accepting my apology! :) I did not think you were offended---I did not intend to--but..."Aussie Girl".(i believe it was)..made me feel sooo,...'guilty'-! :( Anyway--let's keep helping and supporting one another!(and I still feel.....there MAY be something to the acupunture! ;) )- Christian
 
I'm not sure if any of you newbies ever met Alonzo, but if you did you would feel a lot more reassured by what he wrote in "BFS in a Nutshell." The guy has spent YEARS studing BFS and BFCS and all their related subproblems. He knows more about BFS than most neurologists. In fact most of his doctor friends come here to this site when they want to reassure one of their patients that what they have is nothing serious. Simply put, even though he's not a doctor, Alonzo is one of the top BFS experts in the entire world.When I came to this board two and a half years ago, the very first thing I did was track down Alonzo and talk to him a little bit through PMs. I got to know a lot about him, and about how much time and effort he has put into this site, and into researching BFS. What I found out was that the guy has connections to doctors all over the world. Doctors literally come to him for answers. They rely on the very same document we rely on, "BFS in a Nutshell", which is considered by just about everyone to be the BFS Bible. So when you read BFS in a Nutshell, keep in mind that isn't just some random post written by some random doofus sitting at his computer. You're reading the culmination of about 10-15 years of work by one of the world's most respected BFS researchers.Alonzo wrote that post expecting it to be the definitive word on BFS, but he eventually got tired of people continually asking the same questions about BFS, over and over and over. He kept saying, "Um, it's all there in the document," but no one seemed to listen. So he eventually just left the site and tried not to hang around here anymore. Believe me, I've only been around here 2.5 years and even I get tired of seeing the exact same questions and the exact same arguments popping up over and over and over. So I can imagine now frustrating it must have been for him. Alonzo tried to put up with that (on this site, and others) for nearly a decade.Anyway I just wanted to mention all that since you said it was noble of me to give credit to Alonzo. It's not noble at all. I'm not the one who has done all the research on this condition, he is. Anytime you're thanking me you're really just thanking Alonzo by proxy. I am little more than one of his apprentices.
 

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