Fibromyalgia - Real or Imagined?
Comments
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ftaa, I guess when you used the word "crack" in your opening post, it lead many to believe you were referring to me. Well I'm going to partake of the best med available to me. Gonna spend the weekend with my Ray of sunshine. Take care all.
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ftaa--I think you had good intent....and you and Blue have come to an understanding. Some people on here love to put their 2 cents in to almost every thread on here. You are a new poster, and you will realize that.
Good luck to you on treating your illness and having some pain relief in your life.
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The Arthritis Foundation is a good source of information. Fibromyalgia is another condition that requires individualized treatment.
Fibromyalgia (fye-bro-my-AL-jah) is a syndrome characterized by long-lasting widespread pain and tenderness at specific points on the body. The term "fibromyalgia" means pain in the muscles, ligaments and tendons. Although not defining characteristics, sleep disturbances and fatigue are also integral symptoms of fibromyalgia.
This condition is referred to as a syndrome because it's a set of signs and symptoms that occur together with no known cause or identifiable reason. Although considered an arthritis-related condition, fibromyalgia is not truly a form of arthritis because it does not cause inflammation or damage to the joints, muscles or other tissues. It is, however, considered a rheumatic condition because it impairs the joints and/or soft tissues and causes chronic pain.
Fibromyalgia is an especially confusing and often misunderstood condition. Because its symptoms are quite common and laboratory tests results generally are normal, people with fibromyalgia were once told that their condition was "all in their head." However, medical studies have proven that fibromyalgia does indeed exist, and it is estimated to affect about two percent of the U.S. population today.What causes it?
No one knows what causes fibromyalgia. One hypothesis is that when a person who is genetically predisposed to the syndrome comes in contact with some environmental trigger, symptoms develop. Most patients attribute the onset of fibromyalgia to a stressor, such as an acute injury, an illness with fever, surgery or long-term psychosocial stress (sometimes childhood trauma).
Researchers have made some progress in determining what is happening in the body that might cause some of the symptoms people experience. Most agree that the central nervous system in people with fibromyalgia is not functioning properly and that components of the body's stress response are responsible for symptoms.- Sensory processing: Disturbances are probably general and not pain-specific. People with fibromyalgia often experience great sensitivity not just to pain but to loud noises, bright lights, odors, drugs, temperature changes and chemicals.
- Substance P: People with fibromyalgia have approximately threefold higher concentrations in their spinal fluid of this chemical that amplifies pain signals than healthy controls.
- Serotonin: This brain chemical is believed to modulate pain signals and has been found to be low or processed poorly in people with fibromyalgia
- HPA axis: Several abnormalities in the hypothalamic-pituitary-adrenal axis (the brain and hormone interactions that regulate virtually all physiologic activities, including the stress response) have been noted.
- Growth hormone: Some people with fibromyalgia have low levels of growth hormone, which may contribute to postexertional muscle pain.
- Psychological and behavioral factors: Psychological disorders are no longer believed to cause fibromyalgia. However, the anxiety and depression brought about by chronic pain and fatigue can make fibromyalgia symptoms worse, creating a cycle of pain, fatigue, anxiety, maladaptive behaviors leading to more pain, etc.
Fibromyalgia (FMS)
Treatment options
Because the central cause of fibromyalgia is unknown, there is no one treatment that will make your symptoms go away. Therefore it is important to work closely with your doctor and other health professionals to develop a complete body and mind treatment plan that will help you feel better.
Recently the first medication was approved by the Food and Drug Administration (FDA) specifically for treating the symptoms of fibromyalgia. Pregabalin (Lyrica) has been shown to reduce pain and improve sleep. Learn more about pregabalin.
Other options for your treatment plan include:- Education: Understanding the nature of the condition and learning ways to manage your symptoms are the basis of any treatment program.
- Medications: Some can diminish pain and others can improve sleep.
- Analgesics: Different types of painkillers are available for people with fibromyalgia. Acetaminophen (Tylenol) is available over the counter and is quite safe; tramadol (Ultram) is a stronger analgesic than acetaminophen rarely as addictive as narcotics. Narcotic analgesics rarely would be prescribed for fibromyalgia pain.
- NSAIDs: Nonsteroidal anti-inflammatory drugs, such as aspirin, ibuprofen (Advil, Motrin) and naproxen sodium (Aleve), often are used for their pain-relieving effects rather than their anti-inflammatory effects. They may help ease the muscle aches, menstrual cramps and headaches often associated with fibromyalgia.
- Tricyclic antidepressants: This class of antidepressants, including amitriptyline (Elavil), nortriptyline (Pamelor) and the newly approved duloxetine (Cymbalta), work by raising the levels of norepinephrine (formerly called adrenaline) in the brain. Given in doses lower than what is required for antidepressant effects, these drugs can improve the quality of your sleep. They also can relax painful muscles and heighten the effects of endorphin - the body's natural painkiller.
- SSRIs: The selective serotonin reuptake inhibitors are antidepressants, such as fluoxetine (Prozac), paroxetine (Paxil), sertraline (Zoloft), that increase the amount of serotonin in your brain, reducing fatigue and possibly pain in people with fibromyalgia. SSRIs will often be prescribed in combination with a tricyclic antidepressant because SSRIs alone may interfere with sleep.
- Mixed reuptake inhibitors: Some newer antidepressants raise levels of both serotonin and norepinephrine and are being studied for their use in treating fibromyalgia. These drugs include venlafaxine (Effexor) and nefazadone (Serzone).
- Muscle relaxants: The muscle relaxant cyclobenzaprine (Cycloflex, Flexeril) has proved useful for the treatment of fibromyalgia and is often prescribed to help ease muscle tension and improve sleep.
- Other medications: Benzodiazepines (clonazepam [Klonopin] and diazepam [Valium]) may help relax painful muscles, improve sleep and relieve symptoms of restless legs syndrome (unpleasant sensations in the legs that force you to move them constantly), but they are addictive. Tegaserod (Zelnorm) and alosetron (Lotronex) are now available for the treatment of irritable bowel syndrome (alternating constipation and diarrhea with bloating). Gabapentin (Neurontin) is an anticonvulsant medication that is being studied for use in people with fibromyalgia.
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my3girls - thank you for that. My intent was good and I was beginning to think I made a mistake starting this thread! I Love your siggy btw!
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Your welcome ftaa....
the first part of my signature is what my Baba (grandmother) used to say. Not that she cursed often, but in her broken English, that was her way of telling anyone who would listen ...not to worry...it doesn't make anything any better. HOW TRUE!
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Very true! That's very funny and sweet about your Baba!
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It's sounds to me like we are all in agreement. That Fibromyalgia is not a fun thing to have.
ftaa I'm not disagreeing with you. I guess I should apologize that my Fibro isn't as severe as yours. As I sit here with my laptop, I can tell you I won't be getting out of bed today - and my Darvocet is not working. Having a cold on top of it doesn't make things better.
biker/jan: I'm not sure what you are talking about. There are alot things about me people don't know. There are some things about my health I don't discuss with anyone. I developed Fibro after chemo. When the fatigue and pain didn't go away...not being on aromatase inhibitors...we checked further. There are some things even my close friends don't know.
Blue: I'm smiling, yes - you are going to have the best therapy this week-end Enjoy.
Amy: That was a great explanation. Today is not a good day and I will be sleeping on and off all day.
I also believe there are many women out there who have all the symptoms and have not been diagnosed with Fibromyalgia.
Nicki
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ftaa- are you deliberately misinterpretting what I'm saying. I have fibromyalgia. The way you can "cope" with people who you believe, whether real or misinterpretted, is by not being so defensive, not taking yourself so seriously, and not caring what other people say about your illness. You are being incredibly hypersensitive by assuming people are saying things that they are not, and reading negative intentions into peoples' posts. There's a great book and workbook called Feeling Good, by David Burns and I think this would help you tremendously. You seem to want to feel as if you are a victim to people's misunderstanding.
blue- in psychology there are some conditions that don't meet all the qualifications of one or another type and they are referred to as NOS (not otherwise specified) like Anxiety NOS, Depression NOS etc. I look at fibro as a medical an Autoimmune disorder NOS because symptoms can mimic other autoimmune illneses, yet we don't fit into any one category. I think the most successful approach to any illnes whether physical, mental or a combination is a multidisciplinary approach. I too have RLS, and I'm sure you know sleep disorders are common with fibro patients. I also have an REM disturbance disorder. I was given park. meds for the RLS, but they only helped with the RLS and not the REM so I switched.
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Not to get in on the argument but just to throw out something:
As someone said I think that we just don't understand what causes the symptoms that are labeled "fibromyalgia" yet. Because there's no distinct "scientific" cause it has lots of connotations for lots of people. That said, I've had good experiences with people who have been diagnosed with fibromyalgia and when I draw a 25(OH)vitamin D they are deficient or even just insufficient. Now, most people ARE deficient or insufficient but a few of the fibromyalgia people have felt a ton better when they started taking vit D3 and especially once their levels hit the sufficient range (32-100 no matter what anyone tells you about 20 being normal).
My suggestion is to ask your provider to order the test, tell you exactly what the results are and, in the meantime start taking D3 1000 IU daily. But, I'm not your provider so you shouldn't consider this official advice. ...
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I usually just read and don't write but I truly believe ftaa is right, fibromyalgia is not a disease of the mind. To live in pain everyday you do have to have coping mechanisms. Blue is being a little hard on ftaa. And ObamasPresident, who in the world are you to judge ftaa, you don't even know her. Just because you can handle what you have does not mean everyone can. ftaa, it might be worth the effort to take the test Jorf suggested and try some D3. Have you don that before?
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care: Actually I don't know what the heck you are talking about. No one has been hard on anyone. We have all come here to talk about what it is like to have Fibromyalgia. The physicial and psychological issues that affect us everyday. Amy gave some great advice. Blue has been given a double whammy. First Fibromyalgia and then Parkinsons. This is a support board and it's important we can talk about our feelings without negativity. Just because my Fibromyalgia isn't as severe as others, it doesn't mean I don't suffer from it. And actually, I thought Amy put things into the right context with her words. Guess we need to give you some slack though, seeing that you are NEW here, you have to realize the written word can be misinterpreted so easily.
I think this is a good thread, as many out there suffer from Fibromyalgia and believe there are many more who are suffering, but just not diagnosed. I say Fibromyaligia is real. With various stages, just like breast cancer.
Truth be said, this is my "coming out party" because there is a bigger stigma that goes along with a Nurse who is diagnsoed with Fibromyalgia. I haven't shared this with anyone before, not even my husband knows. Now thats certainly an example of a psychological issue that goes along with this diagnosis.
Nicki
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care- anyone can handle anything, if they work hard to do so.
nic- I had no idea you felt so much fear around your dx. You should be proud about how much you're still able to do through the pain and fatigue. I'm certainly impressed and I sure won't minimize how much you suffer. I've has fibro since the late 80s and was dx in the early 90s, first with chronic fatigue then with fibro. I was able to work and go to school for a while, but I got a little worse every year until it became impossible. Ever the optimist, I used to say fibro wasn't so bad, it wasn't like I had cancer or anything. Then I got cancer. I think fibro was great training for dealing with the effects of chemo, because my worst chemo day was never worse than a bad fibro day. I still think there are far worse illnesses to have than fibro, at least it can't kill you.
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I don't have fibromyalgia, but I did have some cognitive therapy. I'm very glad I did, though it was a strange experience. Basically, I learned how to relax with biofeedback. For me, he put electrodes on 2 places where I tend to tense up, and learned how to relax them. I also tried to increase the temperature of my fingers. (Your fingers have sympathetic innervation - that's the fight or flight response), but not the parasympathetic (that's SLUD - salivation, lacramation, urination, diarrhea) response. So if you get your fingers up to about 92-94 degrees, you are doing a very good job.
He said it usually takes about 8-15 sessions.
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Amy: Yep, talk about psychological effects along with the physical. If I mentioned Fibromyalgia to any of my coworkers - I would get a funny look. I did not have it before bc treatment. When I first complained about fatigue and pain, some days not getting out of bed - or worse getting into bed as soon as I got home I was told I was depressed. Lived with that for about a year before my PCP did more of a workup. I find when I'm not feeling good I sigh alot. My biggest fear is not being able to work. I have no retirement or disability and will turn into a bag lady!
Leaf: The information on biofeedback is interesting. I especially liked the warming up your fingers. There are lots of things out there to help us cope.
Nicki
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Following my DX of BC, I have been an avid reader on Breast Cancer.Org.
The new topic re: Fibromyalgia is most interesting.
Coping with ANY debilitating illness presents a challenge and I am sure each of us face our life challenges very differently.
The lack of a root cause of conditions/diseases is not exclusive to Fibromyalgia. I am no more ashamed of admitting to having Fibromyalgia than I am to admitting having had a mastectomy due to breast cancer. What shame is there in having an illness?? Goodness, we aren't talking STDs here.
I have to comment on the statement that "there is a bigger stigma to a nurse who is diagnosed with Fibromyalgia." That is too bizarre !! Nurses are everyday people too.
I have been nursing for many years and know several people in the medical field who struggle daily with Fibromyalgia. We discuss it openly. We accept and respect each other as we would working in any field. Nurses ARE NOT held to a different standard when it comes to disease diagnosis. On that note, I suppose the choice to not share a medical diagnosis with one's husband is equally baffling to me.
I look forward to hearing some positive treatment/coping options.
Grace
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What shame is there in having an illness?? Goodness, we aren't talking STDs here.
I don't think there is shame in STDs either, even though there are some judgmental people who will blame the people who have them? Your point loses effectiveness when you qualify it.
Nic- What about telling your husband scares you? I feel bad that you don't have the confidence he'll be supportive. Protecting yourself from people who you have proven not only do they not understand, but also that they have no interest in opening their minds is one thing, but I'd hate to see you lose out on support that you might have out of fear.
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OPwewon,
I agree with you 100% that there should be no shame in admitting one's Dx of a STD.
In saying that, to know someone struggling with an STD and having experienced the shame she feels puts a different light on the 2 conditions. Think for one minute how it might change your perspective if the STD was caused by one poor choice --- an unfortunate sexual encounter outside a relationship that had been honored and cherished for 18 years.Does she feel shame?YES ! We don't get Fibromyalgia from infidelity.
I probably would not choose to discuss a struggle with a STD on a public forum.That may just be an example of how each one of us handles our own challenges. I do not shy away from any discussion, however, when it comes to conversations of a personal/intimate nature, you might say I am a little more conservative. As I said before, we all handle things differently and maybe we even tend to believe that our way is the best way. I am not so naive to think I am always right and am open to looking at and considering the views of others. None of what I say is meant to be confrontational.
The statement regarding it being "a bigger stigma for a nurse to have Fibromyalgia" bothers me quite a bit. I can not imagine my colleagues/co-workers/peers being anything but empathetic, compassionate and understanding. Maybe it's just me, but I sure can't get a handle on this other concept.
The support my husband provides and the understanding he has gained makes things so easy. I no longer have any need to tell him "I am tired" etc. He sees when I am hitting the wall before I crash into it.
No one is asking my advice, but if they were, it would simply be: Openly share what is going on and give people the chance to understand and care.
Grace
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Chemosabi - Why are you trying to turn this into a competition? Talk about deliberately misinterpreting what someone is saying and being hypersensitive. Also, I wouldn't be surprised if there are homeless women who've been disabled by fibromyalgia and lost their homes...or as you laughingly refer to as being a bag lady. Furthermore, we've all been given at least double whammy's here and who knows how many of us have more "whammy's"? Do you know what others here besides BlueDahlia are also dealing with? Perhaps not, just like others never knew you had fibromyalgia until now. I must say that I honestly don't understand your statement about a bigger stigma nurses have either. How so? Finally, wouldn't it help your husband to know you're not merely tired or depressed but also have a condition to help explain some of your symptoms?
ObamasPresidentWeWon - I have fibromyalgia, too. In fact, I was diagnosed in 1984 so I know a little about it myself. I will again say what I told you yesterday ... "This thread was started as a discussion for those that suffer and how they cope with dealing with people who make light of it. Sure it was prompted by some things I read on here but it's a real issue with people whether you'll admit it or not. I don't feel inferior one bit because I have fibromyalgia and I'm not sensitive to it either. You don't even know me." I'm talking about the fact that there are those who feel it's all in one's head. If you don't agree, fine, but quit the personal attacks. I think you need to get over yourself. I'm a little naive though when it comes to discussion boards so perhaps you can answer this .. does this message board have an ignore feature? I'd like to put you on it since I'm feeling hypersensitive to your posts.
Jorf and Care4us2 - thank you, I was diagnosed with a severe vitamin D deficiency after my breast cancer diagnosis and do take 3000iu of D3 daily, prescribed by my Rheumatologist, who is also the one who did my test. I honestly don't know if it's helped or not but I won't stop taking it since being deficient. I know many who say it has helped them tremendously.Leaf - That is very interesting about the biofeedback. I used to wear a Tens unit, years ago .. wonder if that's similar. How do you increase the temperature in your fingers?
Grace08 - Exactly, you make an excellent point. I'm not the least ashamed either of any of my conditions. I too look forward to hearing some positive treatment/coping options and sharing support with each other.
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I'm back from my weekend and just finished reading this thread. Let me tell you a little story about my experience with fibromyalgia.
A few months after being diagnosed, I was awakened in the middle of the night with excrutiating pain in my abdomen. The pain was so bad that I started vomiting and shaking uncontrollably. My then husband rushed me to the hospital. When they registered me they asked if I had any medical conditions. I told them about the fibro. I should have never opened my mouth. The stigma attached to it then was incredible. They put me in a cubicle and just left me there. Because with fibro, the pain is just imagined<sarcasm>.
Anyhow to make a long story short, they did give me a pain injection after about 2 hrs. of wailing on my part. Didn't check me for any damn thing. I went home shortly thereafter.
Next day, I went to my family doctor because I wanted answers as to why this pain had presented. My doc wanted a urine sample. Well lo and behold, guess what was in the bottle after I passed some urine. A kidney stone.
care4us2, I think the opening poster and you are being a little too hard on me as I know this thread stems from a hateful situation at another forum. Being hateful and dwelling on our ailments just perpetuates the ailment. Needing to continuously justify the ailment perpetuates the ailment. My MDS gave me some good advice, referring to my PD, long ago. He told me, "Your life can be just as good as the next person's if you, yourself accept what you have and consider your illness a minor inconvenience". I may have the illness, but the illness does NOT have me. I don't take things seriously, learned to laugh at myself, and a lot of my humour is tongue in cheek, even when I was bragging about how "smart" I am. Too bad some are so self-involved, they can't see that.
Take care all.
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And this is why I don't like talking about having Fibromyalgia. Grace I was only saying how I feel about myself. The only other thing I will say is Blue you were right on with your story. It happens everyday.
Nicki
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ftaa,
Thank you for the info regarding vitamin D3.
Hopefully the back and forth communication on this thread will remain positive. The worst thing we could do here is add stress to an already sressful condition.
I look forward to hearing anything and everything that might alleviate symtoms of Fibromyalgia.
Look after yourself and each other,
Grace
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Amen.
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I just want to throw in here that too many RHEUMATOLOGISTS think fibromyalgia is "all in the head," "not a real disease," a "syndrome of 'somaticization' of emotions" (feeling pain in your body because you don't acknowledge emotional pain in your head).
I have worked as an assistant to rheumatology researchers for 23 years, and the above statements are made every day by some rheumatologists.
I think those statements are ignorant, wrong, and in fact rather hateful...
But they certainly do explain why a nurse like Nicki might expect to be stigmatized if she discloses that she has fibromyalgia, or why Blue might have found better treatment from a psychiatrist (who KNOWS that the mind IS part of the body!!!!) than from a rheumatologist, if she happened to encounter rheumatologists with noxious beliefs.
The Arthritis Foundation statement is a good one -- but people seeking treatment for fibromyalgia should be forewarned (and therefore forearmed) that there are still too many rheumatologists who believe that fibromyalgia isn't "real."
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AnnNYC, Thanks, I'm sure that's true! And just like SOME rheumatologists say that every day, so do too many of every other type of doctor as well as other people in all walks of life. That's kind of my point here! In your practice have you found it to be the majority of rheumatologists who feel that way or a minority?
Fibromyalgia is a soft tissue rheumatism, hence the treatment of it by rheumatologists. You also want to see a rheumatologist to exclude underlying diseases that may present with symptoms of soft tissue rheumatism like rheumatoid arthritis and diabetes.
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Hi, my Mom has Fibromyalgia and she too, has run into folks who don't believe it exists.
I just thought that I would mention that I just saw a CME (Continuing Medical Education) discussion panel on this topic this morning. It was very informative and discussed the difficulty with people receiving a diagnosis and proper comprehensive treatment. These CME shows can be viewed online if you'd like to see the latest info. I THINK that it is a Discovery channel show.
They also had an interesting panel on OCD later this morning.
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Warning: this is off-topic.
Blue, I can match your kidney stone story, and raise you one. The same thing happened to me, twice--and it involved an STD as well!
My first excruciating episode of abdominal & back pain came when I was a college student. I went to the ER (there was a medical school and major university hospital there), where I waited the usual 3 hours, doubled-up in an uncomfortable chair. I had been passing blood in my urine, a fact that I included on the history form.
They finally put me in a room. The ER doc came in, took a brief oral history (very uneventful), found out I was a college student ... and did a pelvic exam. I don't know what samples he collected, if any, but when he was finished, he washed his hands, turned to me, and said, "Congratulations! You do not have a sexually transmitted disease! You can go home now."
[pause...]
"Okay, doc. Thanks, but I already knew that (considering my then-nonexistent sex life). So, what do you suppose is causing the blood in my urine???"
"Oh. Ummmm... I guess I need to refer you to the Urology Department for further workup." I went home and passed a stone later that evening.
Fast-forward about 4 years, to another episode of excruciating abdominal & back pain. Different city, different hospital with a different ER. This time I was placed in a room lickity-split, because of my documented history of stones. I waited in that room, curled up in a fetal position that you probably remember well, for about 3 hours. Finally I sent my dh out to find out where the doc was.
Turns out, the entire ER staff was hosting a birthday party--cake, ice cream, and all--for one of the nurses. They were all gathered in the lunchroom down the hall, and had been for the better part of an hour. My dh told them his wife was in so much pain that if somebody didn't come pretty soon, she was likely to throw up all over everything and pass out.
The morphine arrived shortly after that.
I know, it has nothing to do with fibromyalgia.
otter
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Gee Otter, don't they know that passing a kidney stone is as painful as childbirth?
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I have 4 friends that have been diagnosed with fybromyalgia over the years and are on an anti-depressant called "Amitryptoline".(sp ?) They have found that besides depression, it works on people who suffer from chronic pain.
Some years back I started to struggle with excruciating back pain. I could not lift a wash basket and was at the end of my rope. I went to my family Dr. and asked if I could just try this drug because it was helping my friends and he agreed I could take it and that it wouldn't harm me because it was a low (25mg) dose. I have to say, the pain disappeared and for fear of that coming back, I am still on it 12 years later.
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grace- In saying that, to know someone struggling with an STD and having experienced the shame she feels puts a different light on the 2 conditions. Think for one minute how it might change your perspective if the STD was caused by one poor choice --- an unfortunate sexual encounter outside a relationship that had been honored and cherished for 18 years.Does she feel shame?YES ! We don't get Fibromyalgia from infidelity.
I have a few friends with STDs any they haven't felt shameful about their conditions. One has HPV, one had (or has) chlamydia and I forget the other 2. They were all in committed relationships with their first or 2nd sexual partner. Interestingly, one of my friends has since become promiscuous and she hasn't had an outbreak since the first one 15-20 years ago, What does it matter how the person got the illness? People blame those with lung cancer for smoking. This is all about how people internalize and externalize their conditions. I'm a psychologist and some in the profession feel shame if they struggle with depression, anxiety or another more serious mental illness. Some believe there is more stigma for someone in the profession to struggle, like Nicki does feeling that way about being a nurse with fibro.
ftaa- I guess what I've been saying to you hits a nerve and that's good if it can inspire you to look outside yourself and consider the possibility that the issue is in you actually caring what other people may or may not be saying. Or you can just continue to feel like a victim of people not understanding you. The choice is yours.
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ftaa- I guess what I've been saying to you hits a nerve and that's good if it can inspire you to look outside yourself and consider the possibility that the issue is in you actually caring what other people may or may not be saying. Or you can just continue to feel like a victim of people not understanding you. The choice is yours
Right on, Amy.
Angel seems to think that every condition she has is worst than anyone elses from cancer, surgery, rads and now even fibro.
I commend your strength for dealing with this pain you are in. I personally think that fibro is misdiagosis of somthing worse, but the doctors cannot find the cause yet. Once they do then drugs will be better for sufferers.
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