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ConnieD
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I feel your pain, too. I would be scared and feel so guilty when asking for refills on my pain pills. But my gosh, I couldn't function without them. The stiffness in my neck and spine was paralyzing. Sometimes, the stiffness would move around and be in my toes, fingers, or an elbow, but mostly my neck and spine. FM really sucks big time. However, I've learned that it's a possibility that many people with FM may actually have lyme disease (or some other type of bacterial infection such as babesia or bartonella) that is at the 'root' of the problem, causing the pain of FM. I finally found a doc who is aware of these possibilities and low and behold that was exactly what was killing me, Lyme disease. My FM, CFIDS, arthritis was caused by Lyme disease. It is a distinct possiblity for many people who suffer with FM. Please, you guys and girls, I beg you to consider this posssibility, because if that is what is causing your FM, there is hope for recovery and an end to the pain. I'm actually recovered after a long struggle and a lot of 'detoxing." My FM was getting so bad, I could barely put one foot in front of the other ....and I have 3 young children to raise...just like many of you, I want to live and enjoy, not just get through another day and hope the next one is just a little better. The suffering is insane, so please you all, just look into the possiblity. You may actually be suffering from a bacterial infection called lyme disease. When you read about it, you will see how sneaky it is and also you will learn of 'politics' surrounding this disease. You will also see how many symptoms of FM coincide with Lyme and realize that is a very distinct possiblity (even if you don't remember ever being bitten by a tick...some ticks are so small that they can be attached and feed for five or so days, then fall off and you never knew it happened) I'm just trying to get the word out so that others can get well from FM, like I did. Peace, Connie Please do not take anything I say as medical advice. I am not a doctor.
Open your mind to the possibilities available to you.
An attitude of gratitude is good 'medicine,' too.
~Lyme Disease Support Group Leader~ |
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geekGirl
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I agree with everyone that docs need to be careful. At the same time I stand by my statement that if the docs knew what they were doing they wouldn't be so afraid of making a mistake. I also think doctors are so afraid of getting sued that it impedes upon their doctoring skills. Factor all this in with the typical detachment style of most docs and you get someone who is incapable of listening to his/her patients and treating them effectively. Docs need to be trained better on how to interact with their patients, and get to know them. Heck, they make enough money to, at the very least, learn and know my name without looking at my chart. I am admittedly biased when it comes to healthcare, bc of what I have been through with incompetent doctors. I also think this was a positive thing, bc now I evaluate the quality of my healthcare on a totally different scale. I don't put up with anything, and I am very verbal about this. I go into my appointments and let my doctors know where I stand. That way if they have a problem with it I can leave and waste no one's time. It is YOUR healthcare, you must demand what you deserve. Until people start standing up to their doctors, and not let them get away with their dismissive attitudes, and lack of patient involvement in the treatment process, doctors will continue to disrespect their patients in the name of their egos. A witty saying proves nothing...Voltaire |
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aurorasmom
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Wow, everyone, it sounds like something that has been in my head for a long time! You know, even though you know its not true, you feel like your the only person in the world who feels the way you do? I feel exactly the same way... I am scared to ask for something and I am scared not too... why should we have to feel this way? My Grandpa who died last year was a dr, and he said that drs now adays don't go through any type of "bed side manner" classes anymore like he had too. They just train them and send them out into the world without any sympathy or empathy for anyone! I think its disgusting! How can you treat people if you don't know how to "treat people"? Especially ones with chronic illness'? When I go into the dr, I try to remember that I am a consumer and the dr is supposed to give me the service to the best of his abilty and to my satisfaction. Instead, its "revolving door" medicine to cash in on all the people that are suffering... they have no interest in making there patients happy, they just do what they think your type of "case" needs. Some are good, but most are not worthy of treating me or anyone else with fibro! Off the subject, i saw you talking about Benzos? or something to that effect.. What are those? I know Valium, but what are they for? pain? or depression? or both? and is Elavil one? I don't want to be put on yet another med that can cause withdrawl! :[ |
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meleggs
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Benzo's have an affect on the central nervous system. Others include Valium, Kolonopin, Xanax, Ativan etc. Some people take them for anxiety. If you are prone to anxiety attacks aka- heart racing fast, dizziness, feel like you are going to pass out etc in a stressful situation the drugs slow the central nervous system down so those symptoms pass. Some people, use them to sleep because the calming affect on the body can help someone sleep better. I also have restless leg syndrome so when I stop moving- especially at night I have extreme tingling, cripy crawler feelings on my legs and it makes it hard to sleep. You keep moving your legs at night because it's so bothersome. I know they even give kolonopin to people with seizure disorders- again slows down the central nervous system. The danger with these drugs is that the body can become addicted to them and sometimes after time people need MORE to get the same reaction. They also can be difficult to withdraw from. Also people/kids on the street use them for recreational use because they can make you feel high/drunk. Elavil is an antidepressant. It's been around for a while. I know many rheumys give it as a sleep/pain aid to people with fibro. I don't think any doctor will have problems giving you elavil. I will tell you this- hate to tell you this but I have a friend with fibro who was on elavil quite a few years ago. She also took it for sleep/pain. It did help her sleep and gave her some pain relief. In HER case- and I stress HER because everybody is different- she gained about 70 lbs on the med. which caused her to have high blood pressure and she stopped having periods. (She is also very sensitive to meds.) She was on it for 3 years and when she did research and found out her problems may have been from the elavil she stopped taking it but pretty cold turkey. You should NEVER stop an antidepressant you've been on for a while cold turkey. She was sick for a few months. She had terrible mood swings, hot flashes and "zaps" in her head. They finally stopped and she had to work at it but lost about 50lbs of the weight she put on. I think other folks who are on elvail feel ok on it and are involved in the forums. I said earlier that I tried it but it didn't help with my sleep- only gave me weird sleep with nightmares. It might be fine for you but any of the antidepressants require a person to taper off them to minimize side affects. Hope this is helpful-m |
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ConnieD
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I was on elavil, too. I also had really terrible nightmares. I didn't know which med caused the nightmares as I was taking 8 or 9 prescriptions at the time! I was also on lexapro and thought about suicide when I was on that. Talk about fun. That's in the past , i am med free now. Please do not take anything I say as medical advice. I am not a doctor.
Open your mind to the possibilities available to you.
An attitude of gratitude is good 'medicine,' too.
~Lyme Disease Support Group Leader~ |
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hipmama42
Posts: 555
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ME Leggs, you are right...antidepressants have terrible withdrawal symptoms too...I had to quit when I was pregnant and nursing, and it was terrible, on top of the hormonal mood swings and trying to quit smoking too...I was nearly an axe-murderer around my ex husband! He is lucky to still be alive! I am not preaching or moralizing here, just sharing what happened to me. The benzos are NOT dangerous or "bad" in any way, I just was not able to handle them because I am an alcoholic/addict (now in recovery). I don't like that ANY of these docs judge us or limit what they will give us based on fear of DEA or moralistic biases. They simply have no idea what we go through or the beating our brains and bodies take with the chronic lack of sleep. Chronic untreated anxiety, be it GAD or panic attacks, takes its toll on the immune system, ability to sleep, and ability to handle the pain of fibro and stress of daily life. My grandmother was able to take a half of a 5 mg Valium every day of her life for the last 30 yrs of it, just as needed to control anxiety or help her sleep. She never increased her dose or abused the drug in any way. Now doctors would probably not prescribe it if she were still alive. It was a Godsend for her and her family. I will never be "med free" and I have to accept that, because of my mental health issues. I have come to the point where I am no longer embarrassed to be open with doctors about my past, or to list all of the meds I take, but it has taken me YEARS to get to that point. We should all go easy on ourselves. If we need the meds, do not "abuse" them or take them in excessive amounts, and they help us, we ought to take them without guilt or shame and be glad there are meds out there that help us have a better quality of life! Ok, I am off my soapbox now. Kudos to those who are off all meds and doing well...but if you need them like I do, it is foolish and irresponsible to go off of them just to prove a point. |
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Maineiac
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I'm of the opinion that for us to take antidepressents or anti-anxiety meds is no different than a diabetic taking insulin or someone with a bad heart taking heart meds. They do it to survive and live a somewhat normal life and so do we. Just because something cannot be seen or because it doesn't show up on xrays or lab work doesn't make it any less real. I take my meds and I'm not the least bit ashamed to admit it. I don't abuse them and if I am addicted than so be it. At least I can function albeit on a low level but I'm grateful to be able to do that. |
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psk
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Oh Maniac, I could'nt agree more. My meds have made it possible for me to function normally and lead a productive life. I make no distinction between my psych and other meds. They all keep me alive and sane. |
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meleggs
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I'm so happy you guys feel this way. I guess I needed a moral booster. Nobody LIKES to take medication but a doctor can talk with a patient about being responsible with meds rather than just not give them out. As I said LOTS of meds have side affects and can be dangerous if not taken correctly and doctors or insurance companies- who knows- decide which ones they feel better about giving out. Why have pain meds if you don't let those who need them take them. Why have anxiety meds if people can't have them. I'll say this if you ever struggled with extreme anxiety like I did during my flareup the constant feeling of panic is the worse thing I ever felt. I was two steps away from slitting my throat. Oh I can go on and on but it is just too aggravating!!!!1 |
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meleggs
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I'm sorry I mean morale LOL not even sure if I spelled it right that time!!!! |
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