Most mornings I wake up around 5:30am because my slumbering body makes the mistake of changing position and sets off a series of muscle spasms. I have fibro myalga and I wake up in a state of pain that used to make me weep and whimper. I’m more stoic now after dealing with it for 20 years.
Somedays, it’s not just my muscles; I also have connective tissue disease. So, when the barometer is low my joints scream and pop and crack and every step sends electric shocks from tiny joints in my feet up to my knees.
How I cope: First, I stagger to my computer and read. I try to disassociate from my body and tilt my consciousness into my mind. If my mind is active and alert, I can pay less attention to my body’s distress. I take a couple of Advil with a glass of milk and then fuel movement with a can of Red Bull. Because the only way to get past the pain is to work thru it. Even tho it hurts like hell and brings tears to my eyes, I go thru a series of stretching and limbering movements. And I keep doing it until the pain simmers down to a controllable level.
By 10am, most days, I can function like a normal person albeit a tired one. Pain drains energy and by 8pm I’m one tired old hag who has to lie down and watch Olbermann to find some humor in the world.
I know I’m not the only person here with disablities and I wonder how you guys cope. Don’t tell me about pain pills because I’ve done them all and the trade-off — losing my mental alertness — is not worth it to me. I do indulge in Flexiril every now and then when I don’t have to drive anywhere or when limbering doesn’t work and I’m forced to have a do-nothing day. And I do use an “herbal remedy” and drink wine at night to shut up my muscles long enough for me to get to sleep. Other than that, I suffer and cope.
What do you do?
Hi.
I can’t imagine what you go through, even though you’ve articulated it so clearly. You sound like one strong (and strong-minded) woman.
Thanks. To paraphrase the old-saw: What doesn’t kill you, makes you stronger — or makes you want to kill yourself.
I suffer from a skin disorder, a form of eczema, that I can’t even pronounce. Latin names have way to many characters. My skin becomes flaky and raised almost lesions form, which itch horribly. The skin becomes red and irritated and painful. I have tried innumerable methods to curb the itching and flaking, steroids, creams, potions, vitamins and minerals, ultrasound, UV light, you name it I probably have tried it. The pain I encounter, because the itching causes me to scratch and then my skin gets broken and then infections, then more pain and itching and as you can see it is a cycle that can make one mad. I have found meditation before bed time is one method that helps me to be able to sleep, as I can’t drink wine, damn I miss that too. I use tylenol as advil has been shown to have an adverse affect on my particular skin disease. I also come to the blogs to read and focus my mind on other issues, that helps me not scratch myself into burning skin hell. I know someone might be saying how in the hell can one compare a skin disorder to fibro myalga, it is easy, pain is pain is pain and I can tell you there are differences in that pain, yet so many more similiarities. I have great empathy for sjct, all I can offer is the few things I have learned, meditation, over the counter medications, lots of minerals and vitamins, prayer and hope that our strength as human beings will let us continue to walk forward, triumphant over our adversities and gloriously free in our journey in this life. You are in my prayers, that relief comes in small ways that make you able to cope and manage your pain successfully. Again all I can offer you is, I know what you are experiencing and there is always hope. Offering you a Blessing from Great Spirit, that you know the joy and freedom of walking in the light of Great Spirit.
Just read your comment and I have had a similar affliction, one of the possible diagnosis was Shingles. Have you checked that out. If you want to send me an email, we can compare stories and treatments, which I don’t want to do on this site.
I have been though the same as you, many doctors and treatments and no answers. Fortunately whatever it is is now in some kind of remission, but it is the kind of thing that can flare up at any time which is also true of shingles.
As to your remark about that not being painful enough, I can testify that it sure can be both extremely painful and debilitating.
I know first hand the itch, scrath, itch cycle and its ramifications.
Anyway email me if you like, maybe we can help each other.
Hey, I have that, too. 🙂 Might be my Cherokee blood. I had it sooo bad during one period in my 30’s that my elbows, forearms, and even my face were covered with itchy red patches. Right now I’ve got a patch on my right palm the size of a 50 cent piece and it’s driving me crazy. I scratch at it in my sleep. The patch builds up scale, gets hard and then when I flex my hand the damned spot cracks open and bleeds. Absolutely aggravating! You are right — pain is pain — but, heck, the fibro doesn’t show. When I had it on my face, people treated me like a leper.
I’ll take that Blessing and send one right back at ya.
You folks may want to try colloidal silver. There is some controversy about it, as you can see from the first 2 Google links. You decide.
I discovered it when using a horse remedy on a painful and itchy lesion. The pain stopped so immediately that I checked the ingredients, and the only one that I did not know about was the silver. I then researched it, and got some.
It works great topically for itchy things such as eczema. I have also shrunk a cancerous tumor in a dog by about half. Unfortunately, I could not afford (it is expensive) to get more, and within a week the tumor was back to where it had been when I started, and couldn’t get it shrinking again.
Anyhoo, it might be worth a try. I use the stuff from Purest Colloids, who seems to have the best production method that I could find.
It is not recommended by the FDA, which is a point in it’s favor as far as I am concerned.
My favorite historical speculation about silver is that the wealthy did not die off from The Plague at anywhere near the rate of the poor due to the fact that they ate off of silver dishes, and so ingested enough silver that their immune systems could handle the bug.
I am sorry for your troubles.
Good Lord! Emma, I never heard of this product before! What do you recommend for the skin patches? Drinking the stuff or spraying it on? Damn it’s expensive but I could afford to try it out in the little bottle or the spray container. Did you experience any of the de-tox side effects which frankly sound like a normal day for me. LOL! I swear, grrl, if this stuff works I’m gonna owe you homage like washing your feet with my hair or something.
I think everybody needs to do the research, and try out dosages to figger out what suits them. There are many opinions on the websites, ranging from “its poison” to “cured me of cancer with no ill effects”. From what I can tell, there are some methods of electrifying the silver that does produce a concoction that will turn you blue. Actually, maybe all us Libruls should use that kind! JOKE< Be careful…..Where’s my joke emoticon?
I have used a variety of methods, for various things, both drinking and topic application. I feel like, as with herbs, dosage will be person and problem specific. I know that in burn cases, they will cover the area with gauze, and keep the gauze damp. Might try that, maybe covered with plastic wrap for a bit, to keep from the gauze drying out too quickly. It’s way to expensive to allow evaporation! Some of these diseases that are complicated by immune system weakness may require a larger dose than a simpler problem.
If you will e-mail me at anotherrootcanal @ yahoo.com , I will further discuss the ways and reasons I used it with you.
Hope it will work for you. And my philosophy about the foot washing thing is…just commit a random act of kindness sometime!
Yes I have daily pain also and have for at least 15 years, actually have lost count as it is so much a part of my life.
Mine is back primarily, with spinal injuries in my 20’s left untreated till 2004, by which time there was lots of fusion of bones, etc. I have been paralyzed twice, ‘just temporarily’, from the exacerbation of the injuries but all I got for treatment at those time was a shot that uncoiled my body and some pain pills. In 2004 I had some chiropractic care and full disclosure of the actual state of my back, some parts of which are in stage 3 or 4 of degeneration.
I also am a chronic asthmatic and have to take daily medication for that.
I have a high tolerance for pain, due to the years of living with it so I have to be about a six or seven on a scale of 1 to 10 before I even think about pills. I have a very low tolerance for pain pills, they make me very ill, so I constantly have to weigh the benefits over the side effects.
Actually I am in quite a bit of pain right now as I write this, because my right shoulder, neck and arm are the most effected by my back situation and with me being right handed, using the computer mouse, just makes it all so much worse. I have considered teaching myself to use my left hand, but that hasn’t worked too well in trial runs.
So how do I cope, well blogging helps a lot to take my mind off, but then in my case blogging also makes my pain worse.
Just recently I have been using some metaphysical methods for helping with the pain etc., and it does seem to be helping and at the very least it helps to reduce the tension in my body ( tension makes all my injuries and pains worse.)
Since I started to write this my pain has gone from a five to a six, so I will now have to get up, walk around and stretch.
BTW I should have added this earlier but humor and laughter do help my pain considerably, or at least take my mind off it for a time, so I would recommend laughing as much as possible.
Also I want to make this an invitation for ductape and others to throw in their bits of humor in comments a bit more often to help us with our pain.
(Emoticons would help too)
I didn’t think I would go on this long, but sjct, there are sure many of us in the same boat, maybe we need a therapy corner on this site, (chuckle).
I am wishing everyone pain free days…..Those of you who are in no pain; enjoy fully these days.
See Diane, I told you it would help. . .
LOL
Those of you not interested or highly critical of metaphysical thoughts and philosophy, stop reading now. You won’t like it and you will either laugh or become angry. . .neither things that will be helpful to your daily life. The rest of you. . .Up and at ’em.
I don’t often speak of my illusion of physical pain, And know I am only speaking of my own pain here, making no judgments or correlation to you and your pain.
If we are “dreaming” this physical world of the 3rd dimension for the purpose of having experiences not available to us in higher frequency existence, then it is illusionary. A very damn real illusion, but an illusion or dream, none the less.
My physical pains (belief of pain) are from osteo arthritis and two worn out knees that have no cartilage left in them. Arthritis supposedly resides in both knees and the lumbar spine. Walking with bone on bone knees brought me to new depths and experiences of pain. Yes, there is a surgical solution, replace both knees. I have no fondness for doctors, nothing personal, but they are still “practicing” after all. Shouldn’t we want them to be expert, not practice-hopeful? I made the personal choice not to have the surgery, to find another way.
There were times in the past 5 years that IF I could get out of bed, I could not walk. And the pain made sleep for more than an hour impossible. Those were times I found life pretty discouraging and wondered why I, with all my knowledge and understanding of energies and illusions and core beliefs was having to go through this. I am very good at whiny, complaining, WHY ME fits of tantrum. . .in the privacy of my own home. . .thankfully I have moved beyond that space.
So to all of you out there that experience such dreadful and ongoing and unrelenting pain, I have the greatest heartfelt alliance for what you are experiencing. Constant pain is the most wearing and tiring thing I have ever encountered and I understand what you are going through. And I have no doubt that each of your experience of pain is much more severe than mine was, but as it was said, pain is pain.
Being the hard head that I can be at sometimes, I decided that I would “will” the pain out of existence. By my force of will I would refuse to allow it to be. Yeah, well. . .that helped a little, but it did not seem to work they way I thought it should.
Ultimately I came to understand what it was that was holding me back. I believed that my body was “less than whole” that it was injured or in dis-ease. I spent a good amount of time understanding exactly what my belief system about my physical body was. It was not a pretty picture. And the short version of what transpired is that I changed my belief and I changed my health. I still have had no medical intervention. I take no drugs of any type. But I am pain free and have full movement in my body.
I do not mean to suggest that you or others do as I did, I am just saying that it was my choice and it worked for me. Meditation is one of the most important aspects to getting to that place. Laughter is maybe, the most important. Laughing is a wonderful energy of healing and restoration.
And it would be my wish that every darn one of you learn how to breathe properly. It is vitally important to your health and well being.
So I am going to write a diary about breathing very soon and those of you that wish to participate may find it very beneficial.
Prayers and positive healing, loving energy sent to each of you that is experiencing pain in your daily lives. . .my heart goes out to you.
Namaste
You’ve offered excellent suggestions, shirl. Meditation is how I fight back the stress and anxiety that arise from the pain. Also, just smiling most of the time, even when I’m by myself. I haven’t been successful in using that technique to banish the pain entirely, however. Magickal thinking works but, within limits: One may turn water into wine because they share inherent characteristics but all the prayer in the world won’t turn a dwarf into a giant — except in his/her own mind. I haven’t given up on visualizing myself whole, healthy and pain-free so one of these days I may succeed like you have.
Please write the diary about breathing. Most people have no idea that they’re doing it wrong. LOL!
I know and understand all that you go through and all that you do to attempt to bring about a different result. You will find the way that ultimately works best for you. Keep up the good work.
Thanks for the encouragement for a breathing diary. I will give it some deliberate thought and bring it forth.
Your courage and focus are divinely focused and we applaude your great strides.
Hugs. . .(another great healer)
Shirl
Thank goodness for the internet! As you say, if I didn’t have my blogs to keep my mind occupied… well, I’d be making a lot of trips to the library the way I used to do.
Stress is the companion of pain and dis-ease. I have learned to keep myself unnaturally calm and serene and that has helped more than anything. A decade ago, I had trouble getting out of bed because I hurt so much and was spiraling down past depression into suicidal despair.
Then, I learned the most amazing trick: smiling and laughing releases some kind of pain-dulling hormone or chemical into the bloodstream (can’t remember what it’s called at this moment). Anyway, you don’t even have to watch a funny movie to get the effect — just put a goofy smile on your face and you feel instantly better. In other words, if you pretend to be happy, in a few minutes, you actually do feel happy. Same thing with meditation: just fake it till you make it! LOL!
You’re one tough soul!
I have back and neck problems, not all the time though.
Helps that I get a break from the pain now and then. When it hits I try meditation and self hypnosis, stretching and acupressure and, if all else fails, pills and sleep.
I also find that certain scents help a little, lavender oil is one that I find very soothing when it gets bad. A dog to hug helps too, or a cat in the lap. Warmth and wordless sympathy give me strength.
I have a bottle of lavender oil right by my computer. I tell you, I’ve been inhaling that stuff all day! Helps to clear out your sinuses, too.
I really appreciate the folks who have recommended this diary and I hope they did so because they want to see a broader discussion of coping with daily pain. (Maybe they’re hoping to lure MaryScott back into commenting here. I even had that thought when I posted the topic this morning.) But, frankly, the topic is distinctly personal and non-political and meant only to build further bonds of community among regulars. Seeing it up here on the Recommended List is kinda embarrassing.
So, my feelings will definitely NOT be hurt if this diary slides back where it belongs. Gosh, even the Recent Diaries list gets plenty of exposure here. So let’s move up something important instead…
I now have the symptoms of the maladies of every poster on this thread. You might say I’m suggestible.
I really do experience the pain of every miserable condition – chronic or acute – that I hear about. You’d think rheumatoid and osteo-arthritis would keep me occupied enough. Add hypochondria.
Thank you sjct for this story. I hardly expected to find a diary like this on a political site. You have a lot of courage: to get up each day, to endure, and to speak of your condition with such candor, as well as offer others the opportunity to speak of their own troubles. You and everybody here have my total sympathy and admiration.
An added feature of my arthritis (every joint is compromised) is the infinite weight of fatigue. Most nights, I can’t find a single painless position in bed; sometimes a combination of darvocet and benadryl brings the relief of sleep — and often lurid sweaty nightmares. I have to get up, take the medication, which includes prednisone, darvocet, two anti inflammatory pills, and an antidepressant, and wait till I can move a bit – this takes about 3 hours most days. My husband moved out last year, so on the days when my helper doesn’t come, I have to be very careful handling hot kettles, sharp knives, etc. My wrists have no strength; my hands are useless. Thank God for inventing pull-tab cat and dog food cans. The computer mouse is also a stretch for me, but I feel a little better in the evening.
After four unsuccessful ankle replacement surgeries, I had to retire on disability from my job, which entailed being on my feet a lot, talking and walking with students, writing on the chalkboard, grading papers and planning lessons every night, spending incredible funds of energy, and so on. When my mother stopped making sense about five years ago, I went down to South Carolina and brought her up here to Boston to live with us.Now she is in a very expensive nursing home and has become – through the miracle of medicine – very lovable and giggly. A 180o
transformation. She’s aphasic now but still recognizes me.
I discovered that my disease can also lead to a sense of isolation. Too often I turn down invitations for fear of not being able to manage. A few close and loyal friends make all the difference to my life and so does the internet now. A couple of drinks at night -strong ones with vodka-used to be wonderfully anesthetic. Two or three more led to pleasant oblivion.
Soon, though, I was put on a new pill for anxiety and the combination was lethal and sickening. So I stopped. It wasn’t even an effort to quit the alcohol, so I can’t be proud of that.
I don’t talk about this affliction. I don’t want people to pity me and think I’m self-absorbed, which I am (but I fight it). It will get worse; I’m resigned to that. The PC’ers would have you say “accept” or “embrace” your illness. My greatest fear for myself is becoming helpless. There are still people and animals who need me, though. That keeps me going. I have a routine of sorts – that helps very much. And I take my time. Your descriptions of the joint pain fit mine. It’s no longer if, it’s when. When the weather is wet and exhaustion is present, the pain can be surprising and terrifying, even though by now it’s a familiar old enemy. It lurks in wait to ambush. You know how that is.
Well, I don’t know about taking up so much space with this; I think it might be rude to make you hear all this. Maybe I’ll read it over, post, and never come back.
But thanks for the invitation. I wish all of you longer and longer pain and itch and asthma- free periods. God bless.
Oh, overheard a man remark to a woman the other day: “There’s one thing about self-pity: It’s always sincere.”
Please excuse me for pushing the boundaries here with the confessional stuff. Exceeding the boundaries. This is not a GBCW: I’ll probably turn up again to embarrass myself and bore you. Good night all.
I thought the same thing about making such a long post when I posted mine, but what the heck, might as well get it out, we don’t often get the chance to speak of our pain.
I think all of us with pain of any sort suffer from weather changes, any sore or painful area is amplified.
Keep on posting and don’t worry.
Wish you and everyone many painfree days or at least hours or will you all settle for just minutes, I know I would.
Thanks, Diane. This has been cathartic. Though I might regret this later, I appreciate your encouragement.
You did not exceed the boundaries of this topic — you epitomized it. I am now so much better than I was 10 years ago — mainly by using the kind of meditation and visualization techniques Shirl describes above to control the stress and anxiety. I remember most vividly the fear and helplessness I felt then, the utter isolation.
At that time, I took up a hobby — crafting miniatures because I could work on a project in short fifteen minute bursts of energy and then collapse for an hour. While I was working the concentration required took the pain away and in the end I had something neat to look at, something I had made and that boosted my self-esteem. I found an on-line group devoted to miniatures and they were like family. Many of them had disabilities, too, and we whined and comforted each other daily. It was soooooo important to know that I wasn’t alone, that someone out there knew of the hardships I was going thru and cared, really cared about my well-being.
Please don’t go away or slide back into lurkdom. I know it’s painful but type out a comment or two every day so that we all know you are surviving and fighting to overcome your afflictions. You see, now that I know you, I care and you aren’t isolated anymore.
SJCT: Thank you so much for your kindness. You are an inspiration to me; it helps no end to know I’m not alone. This condition often makes me feel freakish and useless. I somehow manage to keep busy enough, but how I would love to find something useful to do. Without my job, I almost don’t know who I am anymore.Right now I am editing – both proof and content – a couple of manuscripts for friends. There’s no immediate deadline, so I can take my time a bit.
I appreciate so much your reassurance and compassion.
You are blessed to be so talented. What are your miniatures like? What is your process in making them?
don’t really require talent, just patience. I started with inexpensive little furniture kits. Somedays, I’d be shaking so badly from fatigue that I’d steady my hand by holding my wrist with the other. I would stain and polish the wood until it glowed. Or paint it in a country style and decorate it with little free-hand roses. I started selling these things on eBay and was shocked that I could earn money. As I got my stress/pain under control I did bigger and bigger projects. I joined a local miniatures club and damned if that didn’t lead to a part-time job! I can’t be too specific about this without revealing my true identity… LOL!