I'm sorry for the delay in response; I don't get on very often. And that is due in large part to having chronic migraines:/
To answer your question, no, I do not, except for the WebMD exchange, just like this one for us with fibro.
I have a decent VA neurologist who is supportive but, of course, he is limited in what he can do. In addition to the 4 meds I am on for migraines, he gives me Botox treatments every 12 weeks (I had quit them and then resumed bc my family thought there was benefit), & most recently, I am on oxygen therapy at home, taken as needed, preferably at the onset of one.View Thread
How I empathize with you, purplediane! I had always prized competency and now, as you say, I hate feeling stupid. I cannot remember 3-step instructions; I have trouble sequencing; I forget having seen a movie or read a book; I forget doctor appts, no matter how many calendars I try to maintain; I forget how to drive to a familiar destination; and I could go on, but I forget what else;) I'm joking, but you get the idea. I also have trouble saying what I want to convey. I stumble over words, I forget words, I can't seem to pronounce clearly. I lose my train of thought, not just when interrupted, but even while I am speaking mid-stream. And if one more person tells me (those w/o FM or CMP) this kind of thing happens to them all of the time, I should collect a dime from each and grow rapidly wealthy! What they fail to grasp is that this mental muddle is a constant, daily, impeding all semblance of normalcy. I could scream, but it would probably come out wrong.View Thread
The only time I get crazy, severe itching is when I have more than 1000mg of acetaminophen in my system. This does not mean that itching is not one of your FMS symptoms. I tend to get very chilly just b4 a flare and not everyone experiences that sensation.
Talk to your doctor and rule out other causes for the itching. I hope you find relief.View Thread
According to my rheumatologist, chronic myofascial pain (CMP) & fibromyalgia are 2 distinctly different maladies. I can tell you that I experience them differently: CMP feels like a sunburn. It might effect a relatively small patch of skin like my forearm or I may feel it almost all over. It's very uncomfortable. And my pain meds do not relieve it. Fibro usually feels like a severe case of flu, just insanely aching head to toe, and/or there can be certain areas that are downright painful. Sometimes pain meds can take the edge off. Either one, I cannot tolerate any touching. Clothing and sitting I have no choice but to manage, but anybody touching me will send me thru the roof!
A book I found somewhat helpful, but is now admittedly dated (2001) is Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd ed.) by Devin J Starlanyl and Mary Ellen Copeland.
I wish you an abundance of pleasant moments.View Thread
OMG! I've got to laugh at myself. For some reason, one I cannot presently recall, I decided to post anonymously. So, I follow up in an anonymous post to MiMi, then forget that I did, and I again reply to Mimi, same content but with my identifying moniker. This is an excellent example of fibrofog, if ever I saw one. And, it goes on and on and on and on and...
I've been online for a while now, and have typed long replies in other discussions, so I make this one brief, without meaning any offense.
I do take magnesium malate, have now for at least one year, if not longer. All of my supplements fall into the same category as all of my meds: I don't dare stop taking any of them for fear of finding out just how well they are, in fact, effective. In other words, I've spent years trying different meds (& supplements) under doctors' care, forced to tolerate numerous dosage adjustments, and now I'm in a tenuous pattern of pain mgmt. I feel like I cannot stop anything I'm presently doing because I Having said that, I still have the goal of eventually weaning off the meds and going strictly with supplements. Lord, I hope so.
I, too, share your perspective, recognizing that no one has ever died of fibromyalgia, or chronic myofacial pain, or chronic migraine. Moreover, as you so aptly pointed out, we do not "battle" a deadly disease. (Oh, but we do battle!)
On bad days, I consider the possibility of suicide. To me, it is always an option, the very last one on a whole continuum of options. I don't want to jinx myself, but I think I finally know I won't kill myself because it is such a dastardly act. However, the reason it remains on the line is because I've had previous suicide attempts. Should I point out they were both unsuccessful? Just a little bit of levity...
On good days, I swing to the opposite of the continuum, imagining I can just take up where I left off before I became ill. I'm going to tackle long-neglected household chores; I'm going to complete projects that should have been completed 2 years ago; I'm going to tutor young students in their grammar studies; I'm going to manage the 2 libraries (1 as a general collection for our church, the other for homeschool families) I've yet to complete; I'm going to...keep on dreaming and hoping.
On those good days, I typically accomplish 1, maybe 2 household tasks. I usually run my errands. I might even make it to the YMCA for warm water pool therapy. Inevitably, when all of that is accomplished, I return home exhausted and pain flares. Nonetheless, there is no denying, those are good days!
They are especially good days if I begin with a meditative reading in Psalms; listening to soothing music periodically throughout; and doing something, anything for someone else, even if it's unseen prayer---it is something worthwhile.
To An_253299: I celebrate that you are alive! I am so glad you chimed in here with us because we truly, actually do understand what you are going through, no matter how "nuts" it may seem, we have been there and done that!
I get so agitated when I watch YouTube videos telling me certain exercises are designed especially for fibro relief. I cannot do any of those and it infuriates me that the instructor speaks as if I can, if only I would try. Surely there must be some kind of exercise that will not put me in 8 out of 10 pain for the next 48 hours, I hear for some, it's yoga. For me, I have to be in the warm water pool, even if it's just to suspend my body hanging from a noodle, and dangling my legs to and fro.
Your headline grabbed my attention, An_253299, because I frequently get surface 'sunburn' pain all over my body, front and back. Sometimes, there is accompanying deep muscle throbbing, aching pain, like in my thigh or in my upper arm, or my hands just hurt. If I understand the doctor correctly, this is not fibromyalgia but chronic myofacial pain. So what? It still renders me useless! Except for you, I've not heard anyone describe this burning sensation. Just another one of our issues, I guess.
There is a psalm saying you are in the palm of God's hand. He's got you, An_253299! You are created in His image, and He doesn't make junk. Your loved ones would never get over their gaping hole loss if you were to kill yourself. (Somehow, we sanitize the lethal action by saying 'commit suicide' but it is an act of killing one's self.) Just think of your grandson. He won't so much care about you not being able to lift him as he cares about you being there for him, to the best of your ability.
As has already been said, you are not your father. My mother, 4 out of her 5 siblings, and her father all died of colon cancer. Imagine my presumptuous fear! Genetic test results show I do not have the marker at all! That doesn't mean I can't get colon cancer, but it does mean getting it is not a foregone conclusion.
Live, An_253299! Breathe deeply. Be kind to yourself. Take mini vacations, even if it's just 15 minutes of solitude. And, remain here with us. We'd love to hear from you again"665View Thread
Oh, another clarification: If I didn't take Gabapentin for chronic migraine, I could then take Lyrica. The 3 weeks I was on it (Lyrica) did noticeable wonders for fm, but my migraines slammed me, so I decided I would rather live with the fm pain than the nightmarish migraines. I still get them, but the frequency, duration, and intensity is not quite so bad.View Thread