I haven't typed about having Fibromyalgia in a while. Although I have been dealing with it for years, it was only fairly recently diagnosed and I still have trouble wrapping my head around the idea of having a condition that has no cure, no known cause, and hurts like a motherfucker. It's depressing, and at times I just want to cry from the constant, relentless pain. Most of the time, I am able to manage it well through exercise, rest, and eating right. Then there are days that nothing at all helps - and since I am unable to take Vicodin; Lyrica didn't help; and I won't take other addictive meds, when those bad days happen upon me, I am, in a word, fucked.
Yesterday was one of those days. Today is worse. My hands and wrists feel like they are on fire, my fingers feel like they are being given little electric shocks. Same with my feet, ankles and toes. My back feels like I'm being beaten with an iron pipe. My head throbs, not like a normal headache, not like a migraine, it's more like the reverberation from being beaten on the back with an iron pipe. I cannot tolerate odors, they make me nauseated today.
I hate this, because I feel helpless to do anything to make it stop. I hate this, because it makes me feel weak, vulnerable, and lost. On days like this, I think I should never have divorced my ex-husband, and that is absolutely untrue. On days like this, I believe the lies my mind tells me, the things that want me isolated and alone. On days like this, you could say I am in a really bad mood, but that would not quite be accurate. Today, I am having a really hard time of it. I don't feel well and it contains a mental and emotional component which I dislike. I know it will not always be this way, yet I am in the thick of it today.
I'm lucky. I am not one of those people with Fibro who is unable to get out of bed on bad days - I am always mobile, and I am always able to get up and keep moving. This is luck, I believe, and I think the years I spent as a long distance bicycle rider helps me a lot in my ability to manage the pain. But the emotional and mental component makes me NOT want to manage - on days like today I want to give up, and crawl into bed, and never get up.
This is not depression - it is pain. I have clinical depression, which is managed by Zoloft, and I know the difference. Zoloft is also used to help manage Fibro, which is interesting. When I get depressed, there is a physical symptom that is scary: I feel like my face is sliding off my cheeks - like my face is melting. I haven't had that symptom in years. Lucky me. Today, though, I am having a really bad day.
29 comments:
EEK! Sorry to hear about your condition. It sounds like a pain-in-the-ash! Does writing help you to focus on something other than the pain?
I suffer from severe tinnitus in my left ear, and when the ringing is really bad, I can't think, can't write, and it makes me a real grouch.
Kvatch, today it hurts to write, but I am at work and work helps me focus on other stuff. But it affects my memory: I cannot remember my password to get into our airline ticket program. It's just gone, and I have to get it re-set. Tinnitus is similar in that it is constant, relentless. I blame the government.
{{{{kissin' your fuckin' fingers an' such}}}}
Really..........take care.
Please.
Me
Liquid, thank you. And I really do blame the government.
Oh Divajood, I am so sorry to read that you are in such pain. Chronic illnesses that have an inflammation component can be so damned relentless. I wish there was something I could do to help. I would blame the government too. I mean, who else would do such a thing to you?
Robin, this has been a really nasty bout last couple of days. And yes, it has to be the Bush administration. I blame them.
I am so so sorry...if you were here I would offer up my Accupressure fingertips ( it is a nursey thing...) and soothing music and tea...and my world famous cornbread...is any of this medicinal? I have no idea...but it is what I have given to my patients for years....and years....It is amazing to me that the Medical World has had so little to offer for fibromyalgia...it has been plenty of time to develope new meds ( but there are how many Erectile dysfunction meds ????)...okay so see you are right to blame the Govt!!!....
I have a neighbor who is trying accupuncture- I will check in with her and try to find out if that is helpful...
many many hugs....
Really sorry for your suffering. It birthed the beauty of your prose. I blame the government, the corporations, our consumer society and whoever else has polluted/poisoned our earth so that we can no longer live here in health.
Hope you're feeling better today.
Enigma, erectile dysfunction is obviously a terrorist weapon and must be fixed immediately. Fibromyalgia is just a pain, and no good Republican has it. I do blame the government.
B.E., seriously, you are right. The increases in auto-immune disorders (fibro, lupus, AIDS, HIV, MS, etc) I believe are from an increasingly polluted earth. I seriously DO blame the government.
I suspect that the asthma epidemic is similarly due to pollution. We're killing our children.
Feeling some better today, I hope?
Fucking yikes. I blame the government too. Since typing is, one would assume, something that doesn't feel all too groovy, have you thought about screaming at the top of your lungs at passers-by?
The Cubs won the World Series. Let that thought stew a bit in your noggin. Does that help?
Hope today is better.
Well, the other reason there haven't been many medical advances in fibromyalgia is because there's not even agreement that it is a disease. That doesn't mean that people don't feel pain but that there is not a uniform constellation of symptoms. The common component is pain but the type, location, severity, and subjective experience of the pain can vary so widely that many researchers are not even really sure we're dealing with a single illness. Add to that the fact that in most cases, a purely physical "cause" for the pain cannot be detected and you have a pretty tough condition to treat.
When I was being trained as a psychologist, I worked for a bit in our on-campus pain clinic. A lot of the folks I worked with had migraines, cluster headaches, and other forms of discrete pain but we saw folks with neuropathies and inflammatory diseases too. We found that relaxation therapy or biofeedback often decreased symptoms considerably. It doesn't cure anything but provides a way to manage the pain and curb the severe attacks. Interestingly, exercise was also one of the biggest helps but trying to get Americans to exercise regularly is not easy.
Maybe it will all go away when Obama gets elected!
Diva
I am so sorry! I read what you had to say and read the comments.I don't know where to start. I don't know what to say. I have been where you seem to be letting yourself go. Don't go there. There is always hope. There is always help!
You have friends willing to help. There are many around us with problems and do not see the whole story when it is before them and they are willing to judge based on their own mistake. You are not one! You are a good one! Trust me I am an honesty freak and it has back fired on me every single time but as much as I regret that and have to live with it I only want to say you have lived your life and done what is right. No regrets. You will be okay!
Just keep smiling! If you need a shoulder I am here! You just rest and take care of you. You are still working that's a plus. You take care!
B.E., I'm marginally better, but not a lot.
Randal, I do the screaming when I am having GOOD Days, on bad days I can't muster the energy. The Cubs, alas, lost a game last night. It did not help my mood. Don't be cruel about the Cubs, or I will have to summon my inner Italian.
Drdon, since I blame the government for everything that's wrong, including the Cubs not going to the World Series since forever, I hope electing Obama will cure it. Except Obama is a Chicago White Sox fan, which pains me to no end. My Fibro doc says that most people with Fibro have at least one other auto-immune disorder as well - and yes, it is a difficult one to pin down because it mimics several other disorders. However, she said there are specific pressure points which define it - none of which I knew until she started poking them - and it hurt like a monster. I hate this, and I blame the government. Yoga helps me - walking helps - all this helps a lot.
Thank you Jim, I am working from home today which actually makes me more productive. I don't have the distractions of the office, and so I feel a lot more relaxed. And getting stuff done. All good.
Diva: I don't know what to say, other than I agree with ya: I too wonder if the govt is to blame, and I'll toss in corporate farming to the blame pile, too. We're killing & poisoning ourselves and our kiddos with the pollution and completely crappy food we're forced to breathe, eat, drink, and absorb.
Your point is correct yet eeerily left unanswered and asked:
1. Why are levels of fibro, lupus, AIDS, HIV, MS so skyhigh?
2. Why did I (and so many of my girlfriends) begin suffering from debilitating migraines in our teens and continue to suffer to this very day?
3. Why are childhood diabetes and asthma levels so skyhigh, too? (We just found out that BabyGirl has asthma. I cried. All the way home from the pediatrician. I don't want her to be dependant upon asthma meds, yet what is the alternative? She pant and weaze her way thru life??? She risk dying due to a deadly attack???)
Something isn't right. At all. We're living longer than our ancestors b/c we're able to fight off more illnesses and diseases via drugs, yet we seem to be racked with illnesses and diseases that have no apparent cause.
Is it b/c of the drugs we've taken to beat the illnesses and diseases?
Is it our polluted environment?
Is it our crappy corporate farm diets?
Sigh.... I need an Imitrex and a stiff drink now :)
I'm sending out e-hugs to help ease your pain, Diva.
Tina, I miss you! I've been meaning to catch you up on Beanie, and find out how Li'l Man is doing - Beanie is just exploding now with her language skills. She is three, and look out! So sorry to hear about Baby Girl having asthama - and yes, I really, truly, do blame the government and the drug companies.
Look at how we eat: processed foods, rather than natural. Refined sugars, too much fat, too many hormones in milk and meats, too many pesticides - of course everyone is sick.
Oh my, I arrive late but still filled with compassion and care.
I do not have any personal understanding of this kind of pain, but I have seen others suffer with it.
My heart to you dear Jood!
Fran you are, thank you. I really do have more good days than bad ones, primarily because I do tend to take decent care and keep moving. I mean, I go boogie boarding in the ocean, I walk, I'm active. The last two days really sucked, today I worked from home and I am lots better, and I really do blame the government.
DivaJood, I am so sorry about the pain you're feeling. I'll blame the government with you. In fact, just blame everything on Bush.
I imagine Fibro is frustrating because it's so elusive. It's hard to agree with Tina's statement, but I think she's got a good point, especially about the crappy environment. And your comment about crappy "food."
Please take care and rest. I hope you're better soon.
Hey there friend...I found another version of the video..we need to cheer ourselves..how dare anyone take away something that makes us feel good and laugh...I hope you are doing a little better...take care...
Jood. When I'm really sad, it causes my left hand to ache and a pain to shoot up my arm. It hardly happens anymore but it can; it will. Meloncholia. Ugh.
I am sending good thoughts your way.
Namaste,
Pagan
P.S. I'm interested in your time in Israel. I hope you post more about this. :-)
Stella, I agree, it is all Bush's fault. Bush, and Cheney, together, are the sole causes of everything wrong with the world today.
Enigma, a friend sent me an email joke today that made me laugh so hard I spat tea all over the computer. It actually made me feel better.
Pagan, that sounds very uncomfortable - and since it is left side, that has to be a bit frightening - as that is a symptom of heart attack - pain in the left arm. Have you ever had it checked? And that it comes when you are sad - wow.
And thank you, everybody - working from home today really, really helped. I avoided a lot of stress, and was able to get a lot done.
Namaste
Diva! My full sympathy. Chronic pain sucks- people don't quite understand how devistating it is & frustrating-- your spriti WANTS to function & do things, but the fricking body does not cooperate. It overshadows everything. You can tell I live with some chronic pain myself, to have the depth of understanding.
How is FM diagnosed?
I hope you are felling better by now & the beast has stopped roaring.
Sorry I've been scarce lately, Diva. To cheer me up, I got the bright idea to check & see what fun thing you've been up to! I sure hope today is going better, that the despondency has abated along with some of the pain.
My hub's cousin suffers with Fibro. Took her YEARS to get a proper Dx. At one point she was so low, she called up her mom & could barely get out the words, mommy come help me I'm dying. Her mom told us she thought at first it was just another migraine, but the use of "mommy", a word my cuz hadn't used in 40-yrs, had her on the next plane. She was shocked to see how bad off her daughter was (you know when you only talk to someone on the phone, you don't see how bad things are). Her house, her job, her very appearance were so altered since her last visit. She accompanied her to doctor after doctor, but by now my cuz was acting so mental, they were referring her for psychiatric. To make a longer story shorter, my aunt found a holistic doctor (which was not & is not covered by her med ins) who put my cuz on a rigorous diet along with tons of supplements (other doctors were simply Rxing pain meds). FFwd to to today & she is much improved.
One thing she told me about the pain that you have now confirmed is it is not achy or soreness so much as a burning sensation. This is a woman who suffered from Reyes Syndrome (constantly freezing cold hands), yet when the Fibro acts up, she says her hands are on fire.
I have no idea what the holistic doc did that worked and what they tried that did not work (it was a long process as I recall), but more than anything I think she was grateful that someone FINALLY took her seriously. It is serious & debilitating and the physical pain triggers mental changes.
I don't know if any of this gives you any ideas that might help, but I sure hope by today (since I am days late here) you are feeling much more Diva-ish.
Fran, Fibro is diagnosed almost by a process of elimination, however, there are some classic symptoms which include pain in a series of pressure points which feel bruised. Find a really good Arthritis Treatment center, and they will likely have someone who specializes in Fibro as well. Once diagnosed, then the real issue becomes management since there is no cure.
DK, I came to work today because I had to - so no meds. It is actually important to look good rather than feel good in Los Angeles, let me tell you. Fibro feels like a low grade flu at all times, with muscle aches, and the bruised feeling - but flareups, like this one, makes the tingling in the hands feel like they are on fire. My cousin is going to take me to her Chinese Herbalist in Ventura - she says he's changed her life with holistic meds and she doesn't take Vicodin at all any longer. She's doing really well.
Goodness. I have heard of the disease, of course, but not really understood how terrible it is for those with it. Since I haven't read your blog until recently, pardon me if I am saying something you have already tried but have you tried acupuncture or reiki to see if they can give you some pain relief. I am not one to try eastern medicine first but when western can't do anything, then I see nothing wrong with trying the other options. Also some faith healers, like Gene Egidio, have had good results with people. If you have been through all of these ideas, pardon me for mentioning them again. I know how it is to have people want to provide solutions when there isn't one. It's human nature though to try to fix things even when sometimes they aren't fixable.
The pain in my left hand started when I was an elementary school kid. I think it's just a physical manifestation of depression. It hardly ever happens anymore.
Your situation, on the other hand, is the physical pain causing you to feel down. It's interesting how it can happen either way.
Again, many thoughts and prayers.
Rain, all good suggestions. I've not tried Reiki, but my cousin wants me to go to her Chinese Herbalist - which I will do, because I can't tolerate this. Massage helps, as does yoga and walking, but I am stuck at a desk job in a toxic company, so things are not good at the moment.
Pagan, yes, pain can make a person completely wonky. And I've been feeling quite wonky all week.
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