fasciculitis

[gunnyl]

I have been dealing with fasciculitis and severe charlie horses in my calves for the past 2 months. The fasciculations are non stop and the charlie horses only when I sleep. The neurologist says the the fasciculations are benign but can't give me a reason and my rheumy says that it's not Wegeners related. Anybody else experience anything like this?:crying:

[delorisdoe]

I am going to google the word fasciculitis.

[Trudy]

I just love how doctors use the term "benign" when they do not know the cause. Are you on prednisone? If so, do you take calcium/magnesium supplements? This along with making sure you drink enough water might help with the cramping and muscle twitching. I recently had a bout with horrible leg pains. Accidently I forgot to take the pain medication (Tramadol) I was taking for something else before going out shopping. By the time I got home I had missed 2 doses and realized I also was missing the leg pain. I weaned myself off of Tramadol over the next few days and have not had the leg cramps since. Researching Tramadol I found this is a not so common side effect. My point is ...it is hard to know what the drugs we have to take are doing to us.

I have tried different Cal/Mag supplements and what works the best for me is Liquid Cal/Mag by Carlson (they are not liquid but actually a gel cap). I do hope you find something to give you relief.

[Dirty Don]

I have been dealing with fasciculitis and severe charlie horses in my calves for the past 2 months. The fasciculations are non stop and the charlie horses only when I sleep. The neurologist says the the fasciculations are benign but can't give me a reason and my rheumy says that it's not Wegeners related. Anybody else experience anything like this?:crying:

Yes, me too...muscle cramps, twitching, even foot cramps in my dropped foot that I can't feel that well!! Jeez! Rheumy (head of WG team) says same thing, benign and probably not related...huh? Didn't have them before..maybe drug related, but doc is not helping me here...we'll have a 'talk' next week!! LOL...take care...I've been on acetominphen for pain...not much, but it helps with the muscular stuff too it seems...

[drz]

I used to have lot of them and they were very painful. One trick I learned at Mayo was to not try straighten out my hand or toes when they cramped up, but to rub the muscles nearby to loosen them up and relieve the cramp. I always thought mine were related to my diabetes and related deficiencies in things like calcium, vitamin D, and maybe Blood Glucose being out of control but they got worse after I was diagnosed with Wegener's and then slowly got better as I got into a drug induced remission of Wegener's. The doctors attributed them to various deficiencies in my body from being malnourished during the Weg stuff and gave me lots of supplements which seemed to help some.

[Sangye]

Make sure you're getting enough salt in your diet. Adrenals need salt to function and pred really messes them up. Calcium and magnesium deficiency can cause muscle cramps, as can potassium deficiency. I've found that I get an odd kind of cramping (along tendons of my ankles and feet) when I'm really worn out. It's not at all the usual foot cramp. I never get those or charlie horses. I gently stretch it out until it gives. Never walk on a cramp to undo it-- it tears muscle fibers and will hurt the next day.

[gunnyl]

I want to say thanks for all of the Reply's! At least I know I'm not alone on this one. The Neuro Dr tested me for Magnesium and Vitamin D a couple days ago but I haven't gotten the results yet. Thanks for the tips on the supplements as well. I am taking Citracal + D twice a day right now but no magnesium supplements. When the test comes back I'll look for the Carlson Liquid if he says I'm deficient on anything.
Happy New Year to all in the Group!

GL

[Thakator]

I'll second Sangye's mentioning the potential potassium deficiency - - especially if you take a diuretic. My rheumie gave me a potassium rx to take on those days in which I also take a diuretic and it works (for me at least). Had plenty of cramping and charlie problems before, none since adding the potassium.

[pberggren1]

Make sure you're getting enough salt in your diet. Adrenals need salt to function and pred really messes them up. Calcium and magnesium deficiency can cause muscle cramps, as can potassium deficiency. I've found that I get an odd kind of cramping (along tendons of my ankles and feet) when I'm really worn out. It's not at all the usual foot cramp. I never get those or charlie horses. I gently stretch it out until it gives. Never walk on a cramp to undo it-- it tears muscle fibers and will hurt the next day.

Thanks Sangye. I did not know that about the muscles tearing. I get a cramp in my feet now and then and I stand up right away and walk it out. Not any more.

[Al]

I want to say thanks for all of the Reply's! At least I know I'm not alone on this one. The Neuro Dr tested me for Magnesium and Vitamin D a couple days ago but I haven't gotten the results yet. Thanks for the tips on the supplements as well. I am taking Citracal + D twice a day right now but no magnesium supplements. When the test comes back I'll look for the Carlson Liquid if he says I'm deficient on anything.
Happy New Year to all in the Group!


Yeah--the cramps and such seem to come with the territory. Some might be exacerbated by the pred; others (particularly the fasciculitis), are likely related to diet. Problem is, at least for heavy kidney involvement, you have a much tighter tolerance for things like sodium, potassium, magnesium, phosphorus, and calcium, since the stressed kidneys have to process all that stuff. Healthy people can, within reason, ingest all they want, and what is not needed will be sloughed off. Those with stressed kidneys can't operate this way. The trick is finding a level of intake that is enough but not too much. As for Vitamin D, that is a tricky subject. Vitamin D comes in several forms; that produced from sunlight, and from most supplements, must be further processed (mostly by the kidneys) to be useful in the body. So you can take all the supplements you want, and stay out in the sun for hours (though that is not recommended for pred users), and there is still the bottleneck of the kidneys before it does any good. (By the way, the kind of Vitamin D blood test that is usually ordered show the serum level of calcidiol, which is what the lever kicks out, not calcitriol, the form the body needs for regulatory uses.)

Al

[drz]

It puzzled me when doctors told me to add extra salt to my food since I had lost most of my kidney function but they told me I was deficient in sodium and needed to get my level back up. Once it was within normal limits I dropped the extra salt.

The advice about not forcing a cramped part to straighten out was also to avoid tearing or irritating the area more. Massaging is more gentle way to relieve the cramp.

[Sangye]

Yes, if you are forceful about stretching a cramp it'll tear the muscle fibers. Gently apply a bit of pressure in the direction to straighten it. After a moment or two you'll feel a little give. Then apply a bit more pressure. The muscle will give a bit more. Continue like this until it's straightened, then hold it in the straightened position for a minute or two to let the muscle adapt and fully relax.

[Al]

Yes, if you are forceful about stretching a cramp it'll tear the muscle fibers. Gently apply a bit of pressure in the direction to straighten it. After a moment or two you'll feel a little give. Then apply a bit more pressure. The muscle will give a bit more. Continue like this until it's straightened, then hold it in the straightened position for a minute or two to let the muscle adapt and fully relax. Good advice. I wish the hospital had a staff chiropracter!

Al

[pberggren1]

Good advice. I wish the hospital had a staff chiropracter!

Al

I have never heard of a hospital having staff chiropractor.

[Al]

I have never heard of a hospital having staff chiropractor.
Neither have I, Phil. Doesn't mean it's not a good idea, though....

Al

[pberggren1]

Neither have I, Phil. Doesn't mean it's not a good idea, though....

Al

The pharmacuetical companies would never allow it.

[Al]

The pharmacuetical companies would never allow it.
True. Even so, it is a fine idea....

Al

[drz]

Good advice. I wish the hospital had a staff chiropracter!

Al

The clinic I used to use had chiropractors in their clinic but don't know if they had staff privileges at their hospital. They might have been available as consultants like many auxiliary
non-MD staff are at most hospitals who don't have admitting or discharge privileges.

[Sangye]

Some hospitals have chiropractors on their staff.

Interestingly, during WWII so many MDs got sent to war that it left hospitals understaffed. Chiropractors were often brought in to treat patients. When the MDs returned they kicked out the chiropractors--much to the patients' dismay. Not much later, the AMA began a huge anti-Chiropractic campaign, which went on for many decades and caused the "skepticism" that people still have about chiropractic. The public was manipulated by deliberate lies and deception, as it was the AMA's stated goal to destroy chiropractic. It resulted in 700 chiropractors being jailed for "practicing medicine without a license" even though they did no such thing. It forced chiropractors to live in fear for their lives. I personally know chiropractors who lived through this nightmare, one of whom who was jailed.

In the 1970's a chiropractor sued the AMA and won. It was a major case and resulted in the AMA having to fork over millions of dollars, which the chiropractor donated to the chiropractic profession. The case is Wilk vs AMA--lots about it online. I have a book called "The Serpent on the Staff: The Unhealthy Politics of the AMA" that goes into detail about the lawsuit, showing the horrid campaign by the AMA and its members. I can't read it without crying, actually. It's that bad.

[pberggren1]

Thanks for telling this story Sangye.

It is sad how we are controlled as a society by the elite.

[Al]

Quite the story, Sangye. I was aware of the combative stance of the AMA, but was unaware of the back story. Thanks! It does make dynamic sense: Chiropractic, like most "alternative medicine", can be considered competition for "resources" (clientele). But it is also true that there are some interesting exceptions to this pattern. I'll post later a longer comment on this subject in Natalie's thread.

Al

[Al]

Thanks for telling this story Sangye.

It is sad how we are controlled as a society by the elite.

I agree in principle, Phil, but I admit that the term "elite" raises my hackles instantly, as it has come to connote, particularly by politicians and idealogues (themselves arguably elite), "anyone who doesn't agree with me".

Al

[pberggren1]

I agree in principle, Phil, but I admit that the term "elite" raises my hackles instantly, as it has come to connote, particularly by politicians and idealogues (themselves arguably elite), "anyone who doesn't agree with me".

Al

By elite I mean the worlds richest people that really control the economy and world politics.

[Al]

By elite I mean the worlds richest people that really control the economy and world politics.

I know what you mean, Phil. But I still vote for a moratorium on the word, for reasons noted. It has been hijacked by the perpetrators to re-direct the pejorative.

Al

Al

[pberggren1]

Yes, I know. They do this to seduce us and brainwash us even more.

[Al]

Yes, I know. They do this to seduce us and brainwash us even more.

So....let's not take the bait, but cry out specifically against the seduction and brainwashing....

Al

[Sangye]

I agree with you Al about the word "elite." Many people are using it to refer to educated people as if that's something to be ashamed of!

Yes, the AMA tried to destroy many forms of holistic medicine out of fear of competition, but they went after chiropractic with particular viciousness, as it was the largest group and the most beloved. Osteopaths had also been brought into hospitals during WWII and were also well-received by patients. After the war, the AMA basically told them if they were willing to give up their principles regarding cranial adjustments that they would be treated like MDs and could maintain hospital privileges. The osteopaths conceded. That's why today it's extremely rare to find an osteopath who actually practices osteopathy. They barely teach it in their colleges. All the ones who knew how to are dying of old age. Nowadays osteopaths are no different than MDs. In the 1990's someone high up in the American Osteopathy Association announced that "the art of osteopathy is dead." I'll never forget reading that in their journal. Heartbreaking and a great loss for us all.

[Al]

....Osteopaths had also been brought into hospitals during WWII and were also well-received by patients. After the war, the AMA basically told them if they were willing to give up their principles regarding cranial adjustments that they would be treated like MDs and could maintain hospital privileges. The osteopaths conceded. That's why today it's extremely rare to find an osteopath who actually practices osteopathy. They barely teach it in their colleges. All the ones who knew how to are dying of old age. Nowadays osteopaths are no different than MDs. In the 1990's someone high up in the American Osteopathy Association announced that "the art of osteopathy is dead." I'll never forget reading that in their journal. Heartbreaking and a great loss for us all.

Interesting, Sangye. Our family doctor when I was growing up in the '50s was an osteopath of the old school. He was also a healer, in the sense that I suggest from another thread. He not only did the adjustments, but gave hour-long appointments, knew the patients' complete histories, and did his own urine tests in his office. But he did not have local hospital privileges in the local hospital (there were, then, some specifically osteopathic hospitals, but they were few and far between, and not always complete). When my father was in his final illness, Dr. Hoover could visit him in the hospital, but only as a friend, not his doctor.

Al

[Sangye]

That's actually how I ran my practice. I spent loads of time with each patient and got to know everything about them. I still remember the details of their lives. Since my practice was 50% pediatrics and prenatal, my office was always filled with babies. I remember their favorite toys, their first words, first haircuts, etc... in addition to their ailments. They're all 6 years older than the last time I saw them. Makes me sad to know I've missed those years in their lives. I had hoped to practice in the same town for my entire career and watch the babies I cared for grow up and have kids of their own.

I always went to visit my patients if they were hospitalized. I couldn't treat them but I could help explain their diagnosis/treatment and comfort them. I loved to surprise them with a visit. Sometimes I went to the ER if I heard about it in time. I remember visiting one of my patients in the ER who'd had a serious car accident. She later said it was more comforting to have me there than her husband. LOL

I know of many holistic doctors who still tend to patients this way.

[Thakator]

"They're all 6 years older than the last time I saw them. Makes me sad to know I've missed those years in their lives. I had hoped to practice in the same town for my entire career and watch the babies I cared for grow up and have kids of their own. "

Another dream ravaged by Wegs. So sorry, dear Sangye.

[elephant]

Sangye you are at our bedside daily and helping us even though its not face to face, your words of wisdom calms us and gives us hope.

[Al]

That's actually how I ran my practice....I know of many holistic doctors who still tend to patients this way.

Now, that is what I call a healer! I would like to think that being a holistic doctor, in your sense, is compatible with being a Wegs specialist, and considered so by the practitioners.

Al

[pberggren1]

This is a very sweet and touching story Sangye. Thank you very much for sharing. You are a very kind soul indeed.

[Lightwarrior]

Sangye you are at our bedside daily and helping us even though its not face to face, your words of wisdom calms us and gives us hope.

Ditto, your kindness and light reach through cyber-space to make all of our lives richer. You continue to heal with your words and your spirit. Thank you

[Sangye]

"They're all 6 years older than the last time I saw them. Makes me sad to know I've missed those years in their lives. I had hoped to practice in the same town for my entire career and watch the babies I cared for grow up and have kids of their own. "

Another dream ravaged by Wegs. So sorry, dear Sangye.
Thanks, Ron. Wegs has sure been the source of a great deal of grief in my life.

[Sangye]

Thanks everyone. I know what I do here matters, it's just not the same for me. I miss the babies and the kids and all my patients. My office was always filled with laughter. I ran chronically late because I spent so much time with patients! But most people didn't mind because they'd get a kick out of listening to the laughter and knew they'd receive just as much time and care. So many of my patients knew each other and formed friendships in the waiting room. I was made for that particular practice and was like a fish in water. I never called it work. Even though I can't do it now and may not be able to again, I consider myself so blessed to have had it as long as I did.

[pberggren1]

And now we are blessed to have you.

[Dirty Don]

Thanks everyone.

No, thank YOU Sangye, I haven't been in long, and don't always understand or agree, but your insights, wealth of knowledge is a boon to all of us, including your opportunities to see what you are thinking in front of you. And your caring is more than appreciated...honestly...

Don

[Lightwarrior]

Thanks everyone. I know what I do here matters, it's just not the same for me. I miss the babies and the kids and all my patients. My office was always filled with laughter. I ran chronically late because I spent so much time with patients! But most people didn't mind because they'd get a kick out of listening to the laughter and knew they'd receive just as much time and care. So many of my patients knew each other and formed friendships in the waiting room. I was made for that particular practice and was like a fish in water. I never called it work. Even though I can't do it now and may not be able to again, I consider myself so blessed to have had it as long as I did.

I am sorry for and I honor your loss.

[Sangye]

Thanks, everyone. I sure love and appreciate you guys, even if you're not newborns. :smile1:

Well it seems I have completely hijacked this thread, eh? :blushing:

[Al]

Thanks, everyone. I sure love and appreciate you guys, even if you're not newborns. :smile1:
Well it seems I have completely hijacked this thread, eh? :blushing:

Now, there are hijackings, then there are hijackings, Sangye. As I have said before, when you start a thread, it is sort of like having children: you never know how they are going to turn out. Sometimes, they turn out very well, even of you could not have written their story ahead of time. Personally, I like very much how the subject came around to examples of good healers.

Al

[Dirty Don]

even if you're not newborns. :smile1:Well it seems I have completely hijacked this thread, eh? :blushing:

Well, I'm almost a newborn, so you can count on me to act childishly!! I nearly died and the docs kept me alive this summer...tho I have determined to live a bit better and not be deterred by the little things in life, it seems a natural takeover has taken place 'within me'. I am 63 going on 16 in terms of attitude right now...things could be better, will be better, and a lot of it is due to this forum, this thread, and you, and some others in here...so as I ramble thru WG, this forum, and what awaits me, know that I appreciate all that is said and explained in here...

[gunnyl]

I was telling my Nephrologist about my Cramps and how my Rheumy said that Wegeners doesn't typically present like that and he laughed and said " I'll bet Wegeners never read that textbook definition!"

[Al]

I was telling my Nephrologist about my Cramps and how my Rheumy said that Wegeners doesn't typically present like that and he laughed and said " I'll bet Wegeners never read that textbook definition!"

Good, Gunny! As if nature was required to ready the textbook before deciding how to make a person sick!

Al

[gunnyl]

This is what my legs do 24 hours a day everyday for the past year and a half now. Driving me nuts and none of my doctors can figure out why. Neurologist tried giving me Tegretol XR but it exacerbated the problem and made me completely disoriented. Stopped that stuff after three days.


http://www.youtube.com/watch?v=q2ZOCUy4euI

[drz]

Cramps and spasms like you show seem very common for many of us. They can be annoying and some times very painful. I have been told different suggestions to as to why or what might cause such symptoms. Your spasms seem a bit more intense to be seen so clearly on a video. Must be real annoying too.

[jola57]

I have had them from the beginning, not quite as strong but enough to be painful. Don't know why or how but they start without notice and seem to go away in couple of minutes. When I have cramps it's usually because I am stretching, if I quickly curl up my leg the cramp lessens quickly and goes away. The worst are in my jaw down to my throat, it's so intense it makes me tear up and stays for up to 10 minutes. Pressing on it tightly helps.

[drz]

I have had them from the beginning, not quite as strong but enough to be painful. Don't know why or how but they start without notice and seem to go away in couple of minutes. When I have cramps it's usually because I am stretching, if I quickly curl up my leg the cramp lessens quickly and goes away. The worst are in my jaw down to my throat, it's so intense it makes me tear up and stays for up to 10 minutes. Pressing on it tightly helps.

I have had lot of painful cramps recently in legs and feet. I have never been able to figure out any causal factor. The ones I have in my hand are said to be related to Dupytrens Contractures. I know sometimes the leg cramps follow stretching while in bed, some times they happen when sitting down, but seldom when walking. Exercising or walking a longer time does not seem to be a factor one way or the other in having cramps. It seems like they might be real frequent and intense for a few hours or days and then go away for days or even weeks. The most painful lately involve the big toe going straight up with pain along side front of shin and these take the longest to resolve. I figure the cramps are probably related to my diabetes, GPA, and meds I take, diet, and some other unknown like phase of moon or my horoscope.

[Sangye]

Gunnyl, are you taking any supplements? You may have an imbalance of calcium, magnesium and other nutrients involved in muscle contraction. Certain B vitamins are involved in nerve and muscle function as well. Supplements can either correct or cause such an imbalance.

Is it always in the same muscles?

[gunnyl]

Sangye,

Other than the Folic Acid I take to counter the MTX and the Vitamin D I wasn't taking anything but my Rheumy started me on Magnesium to see if it would help. Maybe slowed them down a little but not much. I am going to see another Neurologist in a couple weeks who thinks he can help. He's going to do a QEEG (Brain Mapping) and see if he can pinpoint the problem. Mostly in my calves although I sometimes feel like there is a phone vibrating in my pocket against my thighs (only way I know how to describe the feeling) really weird and nothing in my pocket! Sometimes it's in my arms and sometimes I lose complete use of my thumbs or sometimes my hands, they just lock up. Sucks when you're trying to type! :ohmy:

GL

[Sangye]

I suggest seeing a holistic doctor to address any nutritional imbalances. If left untreated they can become full-blown medical conditions. You could certainly have a medical issue involving your nerves and/or muscles, but it's important to balance nutrients first regardless.

[gunnyl]

Sangye,

I juice fruits and vegetables on a regular basis and my labs are clean across the board, I still flare from time to time but the labs are good. Rheumy says if she didn't know I have Wegeners, she wouldn't know I have Wegeners. From a holistic standpoint I do everything I can on my own. I'm not a fan of supplements, I'd rather eat the fruits or vegetables and get it naturally. I took the Magnesium on a suggestion from my doctor. My potassium levels are always good. I do like a good bagel and shmear from time to time but I actually take in a lot of nutrients already and tend to eat on the healthy side. This started before the juicing though, about the same time that the Wegeners symptoms set in. I actually noticed the fasciculations before I knew I had Wegeners. My surgeon told me to increase potassium but I was already eating ample amounts of Bananas and I drink coconut water regularly as well which provides a good amount of potassium for those of you who don't like bananas.

GL

[Sangye]

Holistic doctors have a saying: "If people knew what we knew, they'd do what we do." Every holistic doctor I know eats a great diet and every one takes supplements. :wink1:

[drz]

Sangye,

Other than the Folic Acid I take to counter the MTX and the Vitamin D I wasn't taking anything but my Rheumy started me on Magnesium to see if it would help. Maybe slowed them down a little but not much. I am going to see another Neurologist in a couple weeks who thinks he can help. He's going to do a QEEG (Brain Mapping) and see if he can pinpoint the problem. Mostly in my calves although I sometimes feel like there is a phone vibrating in my pocket against my thighs (only way I know how to describe the feeling) really weird and nothing in my pocket! Sometimes it's in my arms and sometimes I lose complete use of my thumbs or sometimes my hands, they just lock up. Sucks when you're trying to type! :ohmy:

GL

I often check my pockets to look at my insulin pump and CGM which are carried in my pockets since both are set on vibrate and often do vibrate for alerts. Many times there is no alert on either but I still have that feeling of vibrations. I have attributed it to my worsening neuropathy. When my hands lock up I figure it is the Dupytrens Contractures getting worse again. Those are often very painful, are yours? Do you have any neuropathy going on? Any signs of Dupytrens?

[gunnyl]

No Dupytrens, I actually had to look that one up. I have an appointment next week Thursday with a Dallas Neurologist. http://www.dallasneurotherapy.com and he is going to do an QEEG (Brain Mapping) on me and says he's pretty sure that he can help. I am looking forward to hopefully making this go away. I don't have any neuropathy (numbing) of any of my extremities other than when it gets cold I tend to lose the feeling in my fingers. I will repost after I see Dr. Walker next week. He actually picked up the phone when my wife called to schedule the appointment after explaining the extenuating circumstances to the Nurse. So I am optimistic that he can help me but we'll see! Till next week!

GL

[Sangye]

I hope the doctor can help, gunnyl :smile1: