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Old 07-04-2012, 09:50 PM   #16
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Re: Rude comments from family over being sick

The subject of doctors not listening will get us going. I also have autoimmune stuff. Hashimotos, vitiligo, alevated ANA. Can't sleep, and this doc who likes to use natural supplements wanted me to take melatonin. I said I thought I wasn't supposed to, since it activates the immune system. No, she assured me it would be fine. ANA jumped to the next dilution, and TPO jumped to 1000, then 1700. Now I'm gluten free, soy free, dairy free (& melatonin free) to tamp down the autoimmune. TPO came back down to 1000 in one month. Hallelujia.

Last edited by Rhaquel; 07-04-2012 at 09:53 PM. Reason: Wrong #

 
Old 07-07-2012, 12:39 AM   #17
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Re: Rude comments from family over being sick

Quote:
Originally Posted by Rhaquel View Post
The subject of doctors not listening will get us going. I also have autoimmune stuff. Hashimotos, vitiligo, alevated ANA. Can't sleep, and this doc who likes to use natural supplements wanted me to take melatonin. I said I thought I wasn't supposed to, since it activates the immune system. No, she assured me it would be fine. ANA jumped to the next dilution, and TPO jumped to 1000, then 1700. Now I'm gluten free, soy free, dairy free (& melatonin free) to tamp down the autoimmune. TPO came back down to 1000 in one month. Hallelujia.
I went on a healthy diet for a short while and after I started back in my old ways, those types of food made me sick to eat them.

I have tried melatonin and it didn't work for me at all. I was on ambien for a very long time. Was finally able to give it up and take neurontin to sleep. Now,, I can sleep naturally without anything, but if I skip taking neurontin, I cannot stay awake during the day (the following day). Something isn't right there..

I really like my doctors but I don't know how to get my point across without them thinking I am being a #*@(@!&*!.. I am sick of having the problems that I do and no answers.

These nerve sensations I have (tingling - feeling like something is crawling all over me), *****ing sensations, it's constant now,, meaning it never goes away, and when it gets bad, it's very distressing, and my bladder goes insane, pressure, urgency, and frequency, so I can't lay down and go to sleep, all I want to do is beat my head in the wall. Neurontin doesn't touch this problem. Nothing can help unless they find out why this is happening to me. I had a nerve conduction study but it didn't show anything wrong. Something is doing this to me and it pisses me off that they haven't been able to tell me why. Just a guess that my connective tissue disorder is affecting my nerves. But no tests to confirm it. I have no loss of sensation so I am wondering how in the #*(!@*!(!(*#% is this a nerve problem.. I just don't understand it..

Short of breath all the time, complex PVC's, chest tightness,, my heart tests came back okay other than showing too many PVC's and bigeminal rhythyms, benign I guess. Smoked for 25 years, xray back in 05 showed scarring on my lung,, maybe it's time to recheck it duh.. God knows I am so sick of this crap.

I can't ever get the answers as to why I have the problems that I do. Only person that gives me answers to problems that I have is my gastroenterologist. Why can't my other doctors do this???

 
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Old 07-07-2012, 01:15 AM   #18
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Re: Rude comments from family over being sick

Hey neveragain, have you ever read up on willis-ekbom disease? (shortened to Ekbom disease, too) It's the new name for restless leg syndrome. Apparently it does more than just limb movement urges, so they changed the name. Can be on all limbs, torso, and phantom limbs, too. Worth reading about? I'm being awoken over and over by itching, and I,m wondering if this is what it is. There is a med for it called Sifrol that someone was asking about because it was making her vomit. Here's what I found on a search for her:

There are drug studies on things like Mirapex for RLS. Here is a new one brand name Sifrol, which is pramipexole. It would appear to be a good fibro med if a person didn't have side effects, because it allows more stage 4 sleep. Sifrol seems to be used to achieve more stage four sleep, according to a study available at thefreelibrary.
This was a FM study:

"The pramipexole dose was titrated up to a target of 4.5 mg/day orally at bedtime.Pramipexole, used for Parkinson's disease and restless legs syndrome, is thought to inhibit excessive autonomic stimulation and arousal in the mesolimbic area of the hippocampus. It is not a sedating medication. Rather, its effects on arousal may allow normal stage IV sleep. The result is that "we're not making them sleep; we're allowing them to sleep," Dr. Holman said.
Adverse events associated with pramipexole included increased anxiety, morning somnolence, diarrhea, and vomiting. The hallucinations commonly reported by Parkinson's patients did not occur in this study."
Someone else reported that new research implicates inflammation pkays a role. Also iron or magnesium deficiencies, or problems with irom receptors.

Last edited by Rhaquel; 07-07-2012 at 01:27 AM. Reason: Add info

 
Old 07-07-2012, 06:41 AM   #19
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Re: Rude comments from family over being sick

I'm going to apologize, I'm too tired to read all of the posts in this thread, but I just wanted to join in. I know what it's like to have your family not believe you. I was living at home (I had just graduated high school) when my fibro started. In the beginning it was fine. I'd get a little sore once in awhile but I could work and pretty much have a normal life...but once it started to get bad my dad decided that he wouldn't believe that I had it. or he would and then tell me that I just needed to work out all the time and I would get better. That was just over 4 years ago and he still doesn't really believe me. Thankfully my fiance and his family do, even though they keep treating me like I'm normal once in awhile. It's hard. I've lost a lot of friends who won't give up the idea of me when I was healthy and they couldn't deal. My current doctor treats me like I'm a hypochondriac when ever I go in just because I am cautious with my body, as it is already ill. I've been seeing him for over a year. He's already screwed me out of disability (he didn't even fill out the forms), told me I am healthy as long as I can count change and dress myself, hasn't given me any medication to help with my fibro (other than amitriptyline which he said was to help me stop peeing so much). I've been through a lot of doctors like that. It sucks, but you keep going till you find one who helps, and friends and family who will listen and believe you.
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Old 07-08-2012, 08:54 PM   #20
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Re: Rude comments from family over being sick

Quote:
Originally Posted by Cerene View Post
I'm going to apologize, I'm too tired to read all of the posts in this thread, but I just wanted to join in. I know what it's like to have your family not believe you. I was living at home (I had just graduated high school) when my fibro started. In the beginning it was fine. I'd get a little sore once in awhile but I could work and pretty much have a normal life...but once it started to get bad my dad decided that he wouldn't believe that I had it. or he would and then tell me that I just needed to work out all the time and I would get better. That was just over 4 years ago and he still doesn't really believe me. Thankfully my fiance and his family do, even though they keep treating me like I'm normal once in awhile. It's hard. I've lost a lot of friends who won't give up the idea of me when I was healthy and they couldn't deal. My current doctor treats me like I'm a hypochondriac when ever I go in just because I am cautious with my body, as it is already ill. I've been seeing him for over a year. He's already screwed me out of disability (he didn't even fill out the forms), told me I am healthy as long as I can count change and dress myself, hasn't given me any medication to help with my fibro (other than amitriptyline which he said was to help me stop peeing so much). I've been through a lot of doctors like that. It sucks, but you keep going till you find one who helps, and friends and family who will listen and believe you.
I've never had support from being sick and I never will. Honestly, I have come to accept that is the way it will always be.. but the comments still get me quite aggitated..

You really need a new doctor. Keep looking until you find one who cares. You can have a number of serious diseases, cancer, heart disease, renal failure, what not, and still count change and dress yourself.. What kind of stupid doctor is that?

You might try Savella.. If he says no, be blunt, and tell him your going to find a doctor that will help. He could also try Lyrica or Neurontin, and muscle relaxants and NSAIDS for pain, or Ultram..

You have the right to treatment, and it's a doctor's duty to treat your condition, and treat you with kindness. He can be held liable if he doesn't.

Does the amitryptyline help with the frequency? Have you been evaluated to see why you pea so much.. Been there, did that. If you need to rant about it, maybe I can help you out.. I know quite a bit about bladder issues..

Some doctors think fibromyalgia is mearly depression, and instead of saying I think your depressed and all your problems are in your head, hypocondriac or whatever, they say you have fibromyalgia.. So if he tries treating it with antidepressants, then you'll know what he's thinking. Except, savella, it is an antidepressant but it's used for fibromyalgia, not depression.

I have wonderful doctors.. Even if I don't get the answers I want though. They are so sweet, they always try to help, and my neuro, he's so determined to make me feel better. My gastroenterologist always checked me with a surgical procedure if something bad was going on.. She is very good with figuring out what is wrong. My GP,, I remember back when I first met him, and he told me I had fibro, he said he wished he could wave a magic wand and make all my problems go away (Awwww I wish he could too, lol).. Last year after that horrible visits with a rheumatologist, I became suicidal again,, had such a lack of hope of feeling any better,, my family was treating me so bad, they was arguing with me about going to the hospital to get help, I remember telling my GP that no one cared, so what was the point,, and he told me that he cared.. Now,, how adorable is that??

A good doctor is going to take the time to listen to your problems.. They are going to treat your symptoms with medications and try to help ease your problems. They will run tests and try to find out what is wrong with you. They will be kind and care about what is going on with you.. One that treats you like your saying your doctor does,, needs to have his license revoked!! Lose his sorry hindend and find a doctor worth having.. They are your support through this when you need help, that is who you turn to, so you don't want a jerk like that to deal with.

 
Old 07-08-2012, 09:05 PM   #21
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Re: Rude comments from family over being sick

Quote:
Originally Posted by Rhaquel View Post
Hey neveragain, have you ever read up on willis-ekbom disease? (shortened to Ekbom disease, too) It's the new name for restless leg syndrome. Apparently it does more than just limb movement urges, so they changed the name. Can be on all limbs, torso, and phantom limbs, too. Worth reading about? I'm being awoken over and over by itching, and I,m wondering if this is what it is. There is a med for it called Sifrol that someone was asking about because it was making her vomit. Here's what I found on a search for her:

There are drug studies on things like Mirapex for RLS. Here is a new one brand name Sifrol, which is pramipexole. It would appear to be a good fibro med if a person didn't have side effects, because it allows more stage 4 sleep. Sifrol seems to be used to achieve more stage four sleep, according to a study available at thefreelibrary.
This was a FM study:

"The pramipexole dose was titrated up to a target of 4.5 mg/day orally at bedtime.Pramipexole, used for Parkinson's disease and restless legs syndrome, is thought to inhibit excessive autonomic stimulation and arousal in the mesolimbic area of the hippocampus. It is not a sedating medication. Rather, its effects on arousal may allow normal stage IV sleep. The result is that "we're not making them sleep; we're allowing them to sleep," Dr. Holman said.
Adverse events associated with pramipexole included increased anxiety, morning somnolence, diarrhea, and vomiting. The hallucinations commonly reported by Parkinson's patients did not occur in this study."
Someone else reported that new research implicates inflammation pkays a role. Also iron or magnesium deficiencies, or problems with irom receptors.
This disorder is going to give you urges to jerk your legs. Only time my legs jerk is when my pulse is pounding really hard in my legs.. I have a tendancy to jerk all over when I am relaxed and almost asleep but I believe that is normal.. I have the sensations.. I don't have the movement assocated with RLS.

If you are itching, get some blood work done, make sure it's not a liver issue or something. If it's parathesia (tingling or such), you need a neurological evaluation. If you have skin problems, really bad dryness or whatever, get it treated. Use some cocoa butter.

 
Old 07-08-2012, 10:46 PM   #22
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Re: Rude comments from family over being sick

I've been looking for a new one, but I'd like to stick at that clinic. I put in an application to get a new doctor 2.5 months ago and I never heard back about it. I'll have to call them again. I was diagnosed by a great doctor 4 years ago, but I moved from that town and am now trying to find a good one. I did tests for like...3-6 months. I swear in the time I got rid of all my blood XD. I'm still looking for a new one, trust me. I'm on a wait list to see a rhuemy and a pain specialist, but it's a long wait. I'm quite limited with my drugs because of my heart meds. Anything that messes with your heart rhythm would just put me back at square one with that, as I already have issues with that. I haven't gotten it checked out, because it started with my Fibro. It can be one of symptoms. I know quite a few others who have the same issues. I've had a uti and never had issues before my fibro.
Thanks for the advice, though! I'd love to have another person to chat with about fibro. It's nice to have people who understand what it feels like
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Fibromyalgia
Heart Rhythm Issues
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Depression
Possible CFS
Possible IBS

 
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