The Papoose Of Pain

papoose, Otavalo, Ecuador

papoose, Otavalo, Ecuador (Photo credit: lumierefl)

We carry our illnesses like a papoose; they clutch us firmly yet we can’t put them down for a minute to rest. There is no relief from chronic pain. I used to think that sleeping was my cure; it used to be but not for a long time. Sleep was my escape for any emotional or physical pain, now it just adds to my frustration. I can fall asleep easily enough (with medication) but then I go through long periods of time when I wake up at 3:30am and am up to at least 6:30am if not longer. Sometimes I fall back asleep for a few hours but it is restless and fitful, with anxiety dreams, tossing and turning.

Who are we, these invisible people of pain? We are mothers and daughters, sons and fathers, sisters and cousins. We were not born this way but one day our “normal” lives changed, forever. For me, my life changed with menopause at age fifty. My body fell apart and it hasn’t been the same ever since. I developed thyroid problems and body aches and pains that left me limp, in bed, groaning in pain. No doctor could help me, my internist looked disgusted as she left the examining room, leaving me inside, alone, weeping with pain. “There’s nothing more I can do for you” she said and slammed the door. I felt bad that I had bothered her, actually she made me feel bad; it was NOT my fault.

I’m not saying I ever ran marathons but I didn’t have to wait to plan the day’s activities until the very last moment. I could plan going to Central Park to meet a friend a week in advance, or to see a new Woody Allen movie with a friend, or go drink a mimosa with brunch. Now, I always have to add: “but I will call you in the morning to see how I’m feeling.” My true friends understand; I’m the one with the problem. I feel ninety years old and handicapped, actually my eighty-five year old mother is in much better shape than I am, for that I am grateful.

I’ve given up hope on a cure for the future, I’m happy that the Rheumatologist I have not only believes in Fibromyalgia but takes it seriously and wants to help me. He also appreciates me because I understand the parameters, there is no cure and when he asks me how I feel I tell him “that under the circumstances I have been doing fine.” I am not bitter, I am sad once in a great while, and enormously uncomfortable. I thought losing weight would help but I lost twenty-five pounds and the pain is still the same.

For the last two weeks I’ve been lying down in the back of our car for four to six hours per day; tomorrow after a grueling tour visiting my daughter’s second college choice, I will sit for another four hours going home. Once home, I will take a hot bath and put on the jacuzzi jets and there I will stay until I can stop screaming silently with pain.

Fibro UnFriendly

English: A zombie

Image via Wikipedia

If Fibromyalgia was a mood and not a chronic illness, it would be grumpy, mean, hateful and cranky. It would be the scariest monster that rages everywhere, over my bed, not even bothering to hide but willfully taunting me in the open. Once constant factor is the weather and its changes, enemies.  I want to set up all the old green plastic soldiers that my son used to play with constantly and place them on the Batmobile and fire truck and police cars and surge through dividing lines. I want to storm the troops of Fibromyalgia pain and run them over completely. In my fantasy, all that would be left in their place would be peace and pain-free living.

I know, I’m living in a dream world but it is better than the one that I am living in now. At night, which used to be my savior, snugly asleep under the covers, has now become another battleground. Pain wakes me up, the newest pain is in my arms and elbows and I never feel well-rested. I try to ignore it at night but minutes later it wakes me up again. I imagine the enemy mocking me, sneering at me as if to say “you thought I was only going to appear once then go away for the rest of the night? HAHAHAHA” ‘That is what I was hoping for’ I try to mumble under my breath.”FOOL” they spit blood right back in my face.

Why do all these new pains seem to intensify after my visit to the Rheumatologist when the blood work is in? Liver function? A little high? Sediment rate? A little high?  Auto-immune disease? Yes, I have that too, an auto-immune disease of the thyroid, known as Hashimoto’s Thyroiditis. When is it too high and what do they do about it? A question that has never been answered so far. Should I take Tramadol, “you could give it a try.” I don’t want to give anything a try, I’m frustrated and tired and inflamed and I just want a definitive answer which I know logically I won’t get. The answer is “let’s recheck your blood in two weeks.”

I’m frustrated, even the small flight of stairs in our house seems insurmountable. My ten-year old dog can come up and down those stairs better than I can when I am in a Fibromyalgia Flare (if that’s what this is, we rarely know for sure.) I have to grab unto the shaky metal banister and pull myself up, hear myself groan out loud, the sounds coming from me are more animal-like than I would care to admit. I try not to emit these sounds when my children are home but sometimes I can’t help it. They know I have this illness, but it doesn’t mean I don’t want to protect them as much as I can.

I drove away their monsters when they were little, why can’t I drive away my own?

I’m On Fire In A Fibro Flare-Up

Campfire-flames

I’ve been working through the pain of Fibromyalgia for the last few months; today it caught up to me in a bad way. I couldn’t move, walk, take a baby step. Even when I sat down on my pale green modern sofa, my feet ached and throbbed and wouldn’t stop hurting. Drugs don’t seem to help me but sleep does. It’s only 7:00pm and I am forcing myself to stay awake even though I am lying down on my bed, stiff and unable to move. I need help to get out of bed, I am grateful for my husband who comes to my rescue. Very grateful.

I am yearning for sleep; to pull the extra blankets over my head and feel my body try to release its tension and pain. I’m hoping the pain will not wake me up tonight, will not tug at my shoulders or send stabbing pain up and down my legs. I need a night off from pain, just one night and then I will be ready to trudge through the pain again, like walking uphill through a windy snowstorm. It isn’t easy but if it has to be done, it’s sometimes possible.

Everything tonight is black and white, food, books, conversations, life. I am trying to relax my muscles but it is not working, maybe I am trying too hard. I am not sure I know what the word relaxation means anymore since my body feels like an overworked metal machine; I am the Tin Man from The Wizard of Oz, still searching for some oil.

After many years of believing in the magic oil, the magic pain relief, I have given up on believing in a possible cure. I don’t care about the naysayers either, I know what I feel, what many of my friends feel. Who wants to advertise or brag about pain? Not I.

I compliment myself on my attitude, still having a sense of humor, still looking forward to a piece of a chocolate chip loaf from a nearby restaurant. I have plans to watch Modern Family with my husband on-line to keep me up 26 minutes later before I beg for sleep. I accept what I can do and what I can’t do. There is a handicap rail for inside my new, deep bathtub. My daughter looked shocked, embarrassed: “Mom, please don’t tell me we are having handicapped bars in the upstairs bathroom.” “Yes” I said quietly but firmly. “Why?” her teenage self asked. “Because I need them, honey” I answered. She had the grace to turn away so I could not see her embarrassed and troubled blue eyes.

I need to use handicapped rails sometimes, like I also need tea with milk and honey in the winter and bright yellow daffodils in the springtime. All of these parts represent me, not just one. Like I need my morning coffee, now known as “a red-eye” a strong cup of coffee with a shot of espresso, it doesn’t define me but it is part of my routine in the morning. Fibromyalgia and my autoimmune disease, Hashimoto’s Thyroiditis are just parts of me; the parts of me that suffers with chronic physical pain. I have to accept that but I do not have to let them define me.

PFAM: You Call Them: CURVEBALLS?

Weeping Willow

To me, a new symptom is a curveball, it’s a nice term for something that feels so bad. I feel them as gut-wrenching hits to my stomach that makes pain reverberate everywhere. Shocks, starting one place in my body, going through my body.

Here is how it all began: my body fell apart in my late forties and crashed at age fifty with menopause. It wasn’t a horror story or a deep, high-pitched scream of severe decline. I had a few anxiety attacks here and there, a little more intense than PMS and hot flashes more frequent than before but not much drama, no sweaty sheets, no wringing tee-shirts.

In an annual check-up I got the eagerly anticipated diagnosis of an under-active thyroid. Didn’t this mean I could eat what I wanted and the extra pounds would melt away? I thought so, but unfortunately not. I was prescribed Synthroid. I took it for weeks and weeks with no change. I was sleeping all day and everything hurt: my teeth, muscles, joints and nails. But, as I was told, thyroid symptoms need time to adjust and so I was a good patient and waited for it to go away. It didn’t.

Three months later I still had aches and pains all over; I described it as having the flu without the temperature. I was back in my Internist‘s office weeping on the table, unable to swing my legs to a seated position; telling her I felt horrible. I couldn’t move, I couldn’t walk, all I did was sleep and ache, non-stop. My Internist looked straight through me,  as if there weren’t tears dripping through my swollen green eyes. She turned away, clicked on her fashionable high heels and left the room saying under her breath yet still audible” I can’t do anything more for you.” My friend and I call her The Ice Princess.

She sent me to see a Rheumatologist in her big medical group ( factory). This doctor told me I had scoliosis (the one thing I do not have) and that I had an auto-immune disease which would lead me wide open to catch all other auto-immune diseases so I went home and googled it. I did indeed have an auto-immune disease of the thyroid called Hashimoto’s Thyroiditis: the solution?  Synthroid. I was on it already so why was I still so tired, and in pain every waking moment. I couldn’t sleep deeply either anymore. Nothing made sense to me, all the doctors said completely different things and no one, no one, acknowledged my pain.

I then went to three other Rheumatologists before finally one of them came up with a disease called Fibromyalgia. “I believe you have been misdiagnosed” the second Rheumatologist said.  A chill of joy went up my supposedly not-s0-straight-spine. A new diagnosis? A new cure? YES!!! I will be cured. Thank you! I was deliriously happy for a few moments until she then told me there was no cure. Curveball? How about complete devastation?  And so, it started again, new drugs, all different kinds, some helped a little, some almost killed me, some were radical and only used to save organs when a transplant was required  others were benign but NOT helpful at all. One kept me in a bathroom for two straight months unable to leave my house.

With the firm diagnosis of Fibromyalgia I knew I was in a whole, new world of chronic pain and no cure. New symptoms would appear from time to time and I would consider those the worst curveballs of all. I would groan when my legs starting hurting so badly I cried out in pain; some were illnesses that were old yet I had never associated them together, others were new and I would groan and moan at yet another symptom of some elusive yet particularly painful, widespread disease. I had always had a small bladder so I never thought about the fact that I had to pee often until the diagnosis of Interstitial Cystitis was given to me, hair loss, body aches, muscle aches and those pesky stomach aches I used to get time after time? The ones that made me get all cramped and bloated and then doubled over with intense pain?  IBS, also listed under  symptoms of Fibromyalgia. Each individual symptom that I thought lived alone, now lived within a deeper, bigger context.

As strange as it may seem, having a chronic illness composed of all these connected parts made me feel better mentally if not physically. I thought I was an outcast  but now, the diagnosis of all these links put together and given a name made me feel more credible. When I get a new pain, a curveball, if you will, first, I fight. Then, sometimes I cry. After that I do some research and realize yes, this is part of that huge family called Fibromyalgia. Then I understand and accept. Fighting back at the curveballs, the new symptoms, in the long run, doesn’t help. Trust me, I know.

Think of us as strong weeping willow trees that lean and sway with the strength of the wind. We don’t break from the force, we learn, as hard as it is, to lean in and go on.

PAIN 11/11/11

pain
Pain
...Hurt...

I AM convinced that menopause was the catalyst for my getting a thyroid disorder, actually an auto-immune thyroid disorder called Hashimoto’s Thyroiditis and Fibromyalgia which crept in….no, more like, crashed into my body right after menopause and never left. It also changed me from a happy person to a somewhat content person. I am more anxious, I have more fear. If PMS was a wading pool, menopause for me, was like a tsunami.

I had been to doctor after doctor, half of them not having a clue what was wrong with me (including my beloved internist who walked out of the examining room in frustration and left me crying inside, alone.) There was a rheumatologist who said I had “scoliosis” and that my auto-immune disease of the thyroid would leave me “wide open for other auto-immune diseases.” Thanks, really helpful and informative not to mention it scared me half to death. I had another rheumatologist who put me on cymbalta and when it did not help said she could do no more and a maniac rheumatologist who put me on various, toxic medicines that are generally given ONLY to transplant patients so that they don’t reject a new organ. He also let me stay on one particularly noxious medicine that gave me gastrointestinal problems so badly I couldn’t leave my bathroom for a month. When I called him after a month and told him what was happening, he said just “give it another month.” A month later, weak and dehydrated I had an office appointment and he said “my bad, that was my mistake.” YOU THINK?

It’s hard to remember “Before” menopause since I am convinced that menopause and fibromyalgia both robbed me of my memory. What was I saying? Why did I come up here? What did I want to remember? Frankly, its terrifying. I can remember verbatim the words spoken in my husband’s and my first fight but what I did yesterday? Not easy at all. It also robbed me of all the energy I ever had, poured it out of my body with an invisible pump and threw it in a large body of water far away from here. It could be fueling the energy of a little known country for all that I know…..

I consider myself a sick woman now, not a healthy one. My Fibromyalgia flare-ups have been so long and pronounced it’s like they are my new constant. I don’t remember when I didn’t ache in agony. Movement of every kind makes me groan out loud. I’m not asking for sympathy or even help, I am hoping for understanding. Please, just remember, I HURT all the time, whether you believe in this chronic pain disease or not. It is my unhappy life, not yours; do not judge. I don’t complain to you, so please don’t offer suggestions. If I want your opinion, truly, I will ask for it. You have NO idea what I go through so don’t even think about saying “you know how I feel.” Trust me, you don’t.

The Separation Between Pain And Pain

snake

Pain woke me up from a deep sleep, as if someone was crossly shaking me awake. It started in the middle of the night, doesn’t it always? I felt sharp, stabbing pain that started behind my ears and shot down to my jaw line like bursts of fireworks you want to watch but not feel. I  moaned out loud; the pain was unbearably familiar but I hadn’t had it in a long time. Labor pains, during childbirth, at least give you a couple of moments rest in between contractions and a beautiful new baby as an award but this did not. I would try to sleep for a minute or two and be awakened by searing pain, inside my head, like a steak being branded on an open fire. TMJ had come back with a vengeance.

I have noticed that my Fibromyalgia symptoms, soreness of legs, feet, joints, muscles, pain everywhere on my body, have been at an all time high. I wonder if it has anything to do with the weather changing since it started so suddenly, or all the stress building up in the last three months or is it just random torture? Maybe it’s all of them, together. I can take medicine for the pain but we all know it just doesn’t help. Nothing does.

I know it doesn’t seem to make sense but I don’t have the energy to take a train to see my Rheumatologist, I’m sorry, I’m just too tired. Patients with other type of  illnesses may not be able to relate to this but chronic pain patients understand. They understand all too well about Fibromyalgia Flare-Ups. “What’s a Flare-UP” you ask? Ah, obviously you don’t have Fibromyalgia and I am jealous of you now. I understand though, it happens all the time. I would not be a good Fibromyalgia Ambassador right now because I tell the truth. Physical and emotional pain are closely connected, they join together like two vapid snakes curled around each other. You can’t have one without the other. Pain is here to stay, it never goes away for long, it comes back like the univited guest that crashes a party with drunken rowdiness. Pain is here to stay; wrap your mind around that.

Venus Williams, I Feel Your Pain. No Really, I Do.

Venus Williams Portrait

Image by TGIGreeny via Flickr

It’s Wednesday night at 9:30 pm. I’m so tired that it seems to takes an effort to breathe; I just want to curl up and go to bed. Every muscle and joint hurt. Every time I have to get in to the car or out, I moan and groan with pain. The same goes for sitting in a chair and getting up, or on the bed or couch, movement is key.  Fatigue and joint and muscle pain are key players on our lives.

I’m so sorry you were diagnosed with Sjogrens Syndrome, another one of the auto-immune diseases. I have a couple of friends who have that too. I have Hashimoto’s Thyroiditis (an auto- immune disease of the thyroid) and Fibromyalgia, a chronic pain disease. Both of these illnesses together pretty much make life a lot more difficult. You will have good days and bad; some of us have it better than others. Sometimes you have to lie in bed when you have a flare- up and hide under your down comforter, other times you can push your way through it, especially when you have no choice. Many of us are mothers, wives, daughters and are not in the position to relax and sit around eating chocolate bon-bons (as much as we would like to.) My husband just had surgery on his Achilles Tendon, he will be on crutches for a very, very long time. It’s my turn to help him.

I truly am sorry you have an auto-immune disease however, honestly,  I am THANKFUL for all the good you will do for so many people. I once wrote a blog post about how I wished a celebrity would have a chronic pain disease because then maybe we would get the credibility we deserve. Chronic Fatigue Syndrome, Fibromyalgia and other chronic pain and joint diseases often don’t get the respect we deserve. There are many uneducated and insensitive, poorly educated doctors (many of whom I have seen.)  I hope you get proper treatment and follow-up with a Rheumatologist. Make sure you not only trust him/her because of their background and expertise but because you truly believe they want to help you get better. It’s key.

It’s a long road, a really long road. Take it one tiny tennis step at a time. Good luck to you. There’s a whole family of people with these diseases on-line, join us anytime.

REPOST: FOR INVISIBLE ILLNESS WEEK:Thyroid Disease And Fibromyalgia With A Touch Of Menopause

Don't give up

Image by quinn.anya via Flickr

I am NOT a Doctor. I may see a lot of Doctors but in no way am I one. I don’t pretend to be one. However, I am a patient, a chronic pain patient and I believe I know a whole lot more, personally, about these subjects than some Doctors do. Sorry, but it is true. This is only what I THINK, only what I FEEL and only what I have EXPERIENCED. For those who have read earlier posts about my dealings with Fibromyalgia, Hashimoto’s Thyroiditis and Menopause, this is different; I’ve never once put my own theories down on (computer) paper. Also, for the young woman who responded to a post saying she will check out Fibromyalgia even though her Doctor said “He didn’t believe in it”  YOU GO GIRL!

I hope this will take the five or more years of suffering that I had to go through and help someone; HELPING just one person would make me extremely happy. I mean that from my heart. I think there is a correlation with the above- mentioned diseases/changes, at least for me there was, especially with Thyroid Disease and Fibromyalgia.

I went through Menopause about five years ago, it wasn’t too bad, I had the usual symptoms but it wasn’t anything I couldn’t bare. I think that Menopause was the catalyst to all these (bad) changes in my body. After being in menopause, I went to my annual physical where my Internist did the usual blood work. When the results came back, for the first time in my life, I had an underactive thyroid. (Thyroid disease DOES run in my family, both my mother and sister have it.) I was put on Synthroid (my opinion ONLY: I use brand name, NOT the generic.)  My symptoms were chronic pain, muscle pain, severe aches and pain, and extreme fatigue.  My own quote: ” I felt like I had the flu without the fever.” That is what I felt like day in and day out. I thought the Synthroid  (for my underactive thyroid) would help but it never did. For months I was in bed feeling worse and worse, my said Internist said “there is nothing further I can do for you” and walked out of the room leaving me inside, on the examining table, sobbing. True story.

She finally referred me to a Rheumatologist who looked at me and said I had “Scoliosis” and that with my thyroid disease (an auto-immune disease: Hashimoto’s Thyroiditis) I should be prepared to get OTHER auto-immune diseases. Gee, thanks. There was no mention of Fibromyalgia and since when did I have Scoliosis? Whatever.

I felt horrible, chronic pain, muscle pain, joint pain, I could barely get out of bed. I won’t even mention the doctor ( he gets lower case on purpose!) that I went to who treated me with very DANGEROUS drugs, I will spare you that. I have Fibromyalgia and I really do think, there may be a connection between Thyroid disease and Fibromyalgia. AGAIN, I am not a doctor. However, I recently read about a new study where they are trying to see if T3 levels are linked to Fibromyalgia. (Promising!?)

Please, if you are experiencing all the symptoms I mentioned, don’t let an ignorant doctor make you feel like a fool. You know YOUR body best. Keep fighting, keep researching and, go to a good Rheumatologist, this is the Doctor that you need for Fibromyalgia. I have a friend who has a Thyroid condition like me (Hashimoto’s Thyroiditis) and a severe case of Fibromyalgia and she only goes to an Endocrinologist. Big Mistake but she will not listen to me. Don’t be like her. I just want to help. If you do see a Doctor that scoffs at Fibromyalgia and doesn’t believe in it: leave, do not stay. Check out your Doctor on-line, I chose mine from a list that said he believed in Fibromyalgia, treated it and patients loved him. I am one of his biggest fans. You deserve this too. Good luck.

Hope For Fibromyalgia-Medication (Follow-Up)

Various pills

Image via Wikipedia

For those of you who asked what drug regimen I am on I am happy to answer. However, I AM NOT A DOCTOR just a Fibro patient who has been going through this for over five years. You should have a Doctor, a Rheumatologist for Fibromyalgia. I also have Hashimoto’s Thyroiditis and sometimes doctors just look at thyroid levels. My thyroid levels were fine but I was still having the intense pain, so I went for different opinions. Don’t just go to an Endocrinologist if your Thyroid levels are fine and you are still experiencing ongoing pain, lethargy etc. Sometimes diseases can be linked together.

At the moment I am on Savella (drug for FIBROMYALGIA) and Nuvigil (was once used for late-night workers for narcolepsy). I also use Alleve at times (2) twice a day if needed but I mostly use that because I have foot problems, however, it may help Fibro problems also, too soon to tell. I also take Synthroid for my thyroid.

One of my friends asked which drugs I have tried. The list is so long it’s on my husband’s computer but I will post this now so you won’t have to wait for the other meds.  A partial list included:

Cymbalta, Plaquannel, Methotrexate, Arava, and Tramadol.

Good luck, let me know what is working for you and what is not.

Yes, There Is HOPE For Fibromyalgia

Wildflower

I have made a lot of friends on some of the Fibromyalgia support groups on-line. I was diagnosed with Fibromyalgia about five years ago. Five years that have crawled at a snail’s pace, going backwards and forwards, up and down, down, down. I wanted to write this blog post for all my fellow Fibromyalgia sufferers and tell you that while there may not be a cure, I have improved.

I never thought I would be able to get out of my bed and get to the bathroom without all the serious, horrendous, stiff, and chronic pain I have had for many years. I never expected perfect, I don’t now, but I do know improvement and I have improved. I almost want to cross my fingers while typing this so I don’t “Jinx” myself, I’m sure all of you can relate to what I am talking about.

I will always have good days and bad days, that is a realization I have accepted. I have taken, in the past, probably about thirty different medications in different combinations and this is the fourth Rheumatologist I have seen (and will continue to see.) While your Doctor does NOT have to be your best friend, you should feel that he/she believes in you AND in Fibromyalgia as a chronic pain disease. That’s very important. The Rheumatologist I went to before this called Fibromyalgia a “lazy diagnosis” and attempted to treat my pain with dangerous immunosuppresant drugs that made me sick as a dog for months at a time. He did this because combined with Fibromyalgia, I also have an auto-immune disease called Hashimoto’s Thyroiditis. I didn’t know better so I followed his advice and took seriously harmful drugs at a dosage that should never have been prescribed. This old Doctor was a genius, but not in Fibromyalgia and not in being pleasant and understanding. As my present Doctor put it referring to my old doctor “it’s his way or the highway.” Don’t accept that.

I am now on a combination of drugs that not only treat my symptoms but also have treated my energy levels. I am NOT running any marathons, believe me and I have flare-ups that still can make me cry, but overall, at least on some days I am better. Please, do not give up hope, do whatever you have to do to find a good Rheumatologist and only a Rhematologist that believes in you and the disease. One where you feel that he/she really wants you to get better and that they truly do care. Don’t settle for less.

We all deserve better and I just wanted to say to all my on-line friends (Hi Graceful Agony Ladies, Chronic Babes, ohmyachesandpains, etc.) please don’t give up and thank you for always being there for me; I love you all.  To friends that are new or newly diagnosed I NEVER  thought I would feel any better and now I do. How long will it last? I have no idea. I have accepted my limitations, I accept that I will have bad days as well as good but I can say for sure, that compared to how I felt five years ago, I am better. My attitude is better too.

If anyone is interested in which drugs work for ME, I would be happy to tell you. Don’t give up, I almost did. If you are new to this and don’t know how you are feeling or if you are feeling mad and angry and sorry for yourself; go ahead, you deserve it. Been there, done that and try to stay in the present, not the past or the future. As my dad used to say to me “Be in Neutral.” It’s a life lesson from my dad that has stayed with me, try it, it might help you too.