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any ideas out there on what actually works for the severe fatigue that comes day after day?. i heard provigil would be really good,but no insurance will cover it,so no doctor will even prescribe it.anyone get prescribed phentermine? ive tried adderall,it made me twice as tired, and ritalin worked for awile,but makes me tired as well.any ideas??im not talking a little bit of fatigue,its severe,that days i feel like i just cant go on at all.i have a hyper son diagnosed with autistic/sprectrum disorder,so i have to keep up with him.
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"(1) Fibromyalgia is a set of symptoms and signs resulting from hypometabolism. (2) Most patients’ hypometabolism has multiple causes. (3) The most common and most potent cause of patients’ hypometabolism is too little thyroid hormone regulation, due either to hypothyroidism or partial cellular resistance to thyroid hormone."
T4 and T3 levels are directly linked to almost every aspect and symptom of fibro, overseas and even in the united states it is becoming more clear that hypothyroidism could be the culprit of fibromyalgia. symptoms of hypothyroidism are:
Note symptoms including: weight gain, depression, forgetfulness, fatigue, hoarseness, high cholesterol, constipation, feeling cold, hair loss, dry skin, low sex drive, tingling hands/feet, irregular periods, infertility.
Note related conditions, including: recurrent pregnancy loss, resistant high cholesterol, difficult menopause, fibromyalgia, chronic fatigue syndrome, carpal tunnel syndrome, mitral valve prolapse.
This is from many different studies and is fact.
My suggestion is to read the following links i post here and go see an endocrinologist to have your TSH T3 T4 Free T3 and Free T4 levels checked. some may come back looking fairly normal and in this case have him run a TRH stimulus test (Thyrotropin-releasing hormone), that is explained in this link: http://www.rain-tree.com/fibromyalgia.htm
also please trust me and read these links below to determine if you should look into hypothyroidism.
http://www.ei-resource.org/illness-information/related-conditions/thyroid-treatments/
http://www.drlowe.com/frf/england2002/brief.htm
i hope this helps.
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Thought this might be of some interest… Sorry for the long post.
Last week I made another fruitless attempt for relief at my 4th PS doctor. I’ll give a bit of background so this will make sense.
I asked my new GP if he knew of a Pain Specialist (PS) who knows something about Fibromyalgia (FM). It’s amazing what Dr.’s don’t bother to find out about this disease. I haven’t had a Rheumy yet ( 7 & counting) who half knew the symptoms and how serious this can be. GP sent me to Cambridge so I thought maybe I had a chance. I asked the secretary while making the appointment if they have FM patients there, “Oh yes, we have quite a few”. So I summoned up the courage and went for the hour ride.
I sit in the exam room in my stylish butt flash smock waiting for the doc. He comes in and looks like a high school kid (cute just the same). I asked if he was Dr. G & he stated he was the resident. Great. All that I have wrong with me and I get examined by an amateur. (Don’t jump on me for that. I know everyone has to learn but my days as a guinea pig are over. At least the Dr. I came to see should be in the room).
He starts asking questions and was very surprised to find I also had RA & 3 Herniated discs. GP didn’t think this was important I guess. He asked me what was wrong. I told him I literally hurt from neck to toe. Conversation as follows:
“Where does it hurt the most?”
“Hips, knees, feet, shoulders, hands, neck, etc, etc…”
“Ok, where does it hurt the most?”
“One day it will be my hips, next day I won’t be able to sleep on my side. Next day I won’t be able to stand the covers touching my feet. I’ll go for days when my SKIN hurts. Not that the other areas stop hurting, it’s just I’ll notice what hurts the most that day.”
“If we could make one area stop hurting TODAY, what would it be?”
At this point I’m aggravated. If he knew about FM he’d know what I was talking about. I felt like telling him to throw a dart & pick a spot himself. I knew all my hope was in vain at that point. I relented and just said “hips” with a heavy sigh. Then I knew exactly what he was going to say…
“Needles in the bursa sacks with plenty of numbing medication, blah, bla-blah, bla-blah…”
“And how does that help the rest of me?”
You know they never ask WHY you don’t want the injections. Anyway, he says “Ok, we’ll give you something to help you without the injections.”
“Is that possible?”
“Sure” he says enthusiastically as he exited the door…I wanted to say “Wanna make a bet?” sooo bad.
Here’s where it gets good.
I clearly hear him & the Dr. talking just outside the door. What caught my attention was when resident said “She WON’T tell me where it hurts the most…” I strongly disagreed with that so I strained to listen. It was broken up but I got the gist.
Res: “RA & Discs”
Dr.: “Insurance?”
Res: “State”
Dr.: Every Insurance Co….different….won’t pay for some (diseases?). Someone with…….they tell me it doesn’t exist……….so I might as well just stay home……
I missed a minute or two here then:
Dr.: “Surgeons are the worst. Insurance will tell them……they receive major kickbacks….It’s all run by insurance companys. The most corrupt is America and the U.K. The least corrupt is Sweden, Denmark…..
He went on for a few more minutes but I couldn’t hear anymore. I managed to jot down a few things that he said since I was still filling out paperwork. Wow.
He came in and immediately started filling out the notes to send back to my GP. He took a look at the list of meds that I have already tried for FM. To sum up the rest of the visit…
Dr.: “Well it looks like you’ve tried everything that I would prescribe you for FM. Those meds didn’t work or had side effects so the best I can tell you is to try light exercise…”
Me: “How am I supposed to do that when I can barely stand for 5 minutes…blah, bla-blah, bla-blah…”
Then I straight out asked (told) him:
“Listen, I was just hospitalized recently and when I was released they gave me Percocets. It took care of the pain pretty well but it made me very tired. Is there anything that strength that will not make me so tired so I can get some exercise? I think that’s 90% of my problem. I can’t do anything.”
Dr.: “No. Even the top FM organizations tell us not to treat it with opioids, they don’t work and it makes the pain worse after a while.” LIAR !!!!!!!!! * see below
Me: “Thank you for your time.” (translation - you are dismissed you peasant, money grubbing, sheep-hoe).
* When I got home I happened to find this from the NFA (National Fibro Assoc.) - “Fibromyalgia patients can be placed on chronic opioid analgesic therapy- This particular class of drugs effectively treats fibromyalgia syndrome”
Full article - http://www.fmaware.org/site/News2?page=NewsArticle&id=5307
AND I personally happen to KNOW it works BECAUSE I have personally experienced it.
Here’s one for ya Dr. ‘I know all because I think I’m GOD’ - you read about this stuff - I LIVE IT!!!! Don’t tell me it doesn’t work. This long post is proof. I know exactly what works for me.
Sorry, I digress, back to the subject at hand. This is such a kick in the teeth. I know that all this corruption goes on but it’s quite another thing to have the Dr your supposed to trust with your health come in and not help you because of politics. I’m fantasizing about writing him a letter telling him I heard what he said and he’s scum for letting me suffer. So not only do FM/CP’ers have to battle pain, but also insurance companys, DEA and Dr.’s who are sheep. Then they wonder why we go to the internet or our friendly neighborhood drug dealer.
I’m sorry for my long windedness, but my second to last post was more than a year ago. It’s not for lack of wanting to, it’s because I can’t do it without some “help” which nowadays is very scarce. I’ll stop before this becomes a book.
And the battle goes on…..
Brightest Blessings to All~
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I have shoulder surgery coming up. I want to know, for those of you that take oxycodone, which generic brand is the most effective for you? Or do you even notice a difference? I want to avoid a major flare, and of course any excessive pain due to the FM after the surgery. I'm taking Mallies in generic 5mg form right now. I only take 1 or 2. After surgery I will be allowed to take up to 4 (20mg) and I want the most effective. I know some people have a poor opinion of Mallies when it comes to hydrocodone, but I don't know much about the oxycodone. This is a new medication for me and I'm only taking it for my shoulder. Any opinions are appreciated. BTW, I find the Mallinkrodt offers good enough pain relief for now. But if you know of a better (stronger) generic (I know they can be 20% difference in either direction) I'd like to know. I want as much pain control as possible!
Thanks!
Tia
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I'm having shoulder surgery in less than 2 weeks. I'm already in a fair amount of FM pain and the shoulder is even worse. I'm wondering if you had a flare up afterwards. I'm also wondering how you handled your need for possibly more than the usual amount of pain relief. How did you bring this up with your surgeon? Did they think you were a quack? Were they skeptical?
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my ex-doc told me fibro does not even exist. he says it is a made-up "condition" used by women to get opiates. he was gleeful when they came out recently with lyrica, says it derails all the opiate-seekers using the fibro complaint. I wouldn't doubt he feels the same way about migraine sufferers. he even devised a 30-question sheet to ask migraine patients to determine if they really have migraines or are drug-seeking.
he has no problem rx'ing benzo's though. ask for a narcotic or just go in nervous, shaking and wring your hands - he couldn't rx benzo's fast enough, just wanted you out of there!
despite having all the classic symptoms, (dark urine, abnormal test, intense itching from bile backing up in the blood, yellow eyes) it took hom 3 months to finally order an mri that showed a cancerous growth on the pancreas was blocking her bile duct. at 87, she had to have the whipple procedure, the most invasive surgery there is other than a liver transplant.
also, every time I'd ask a question or he needed to rx a med, he had to mess around on the computer to find an answer.
and all this takes 10 minutes. if you need longer, the only thing you can do is block the door, stand in front of it till you are thru with your questions and concerns. then bills the ins co for $165!
are doc's all like this? I fired him obviously, but mom still goes to him. I feel like I really have to research all symptoms now and tell the doc what's wrong. shouldn't be that way.
luckily my sub doc is a regular doc - she's my pcp now. charges $98 for a once-a-month visit and spends the full hour chatting. you can get out all your questions out and get intelligent, unhurried answers. no computer in sight. almost like a welcome therapy session.
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Preliminary Study Shows Less Pain, Better Quality of Life in Fibromyalgia Patients Taking Nabilone
By Miranda Hitti
WebMD Medical News
Reviewed By Brunilda Nazario, MD
Feb. 19, 2008 -- Nabilone, a pain drug based on marijuana's active ingredient, may ease fibromyalgia pain.
So say Canadian researchers, based on a preliminary, short-term study.
The study included 40 fibromyalgia patients. First, they did three things:
Rate the intensity of their fibromyalgia pain. The rating scale ranged from 0 (no pain) to 10 (the worst pain imaginable). Their average rating was about 6.
Rate their quality of life. The rating scale ranged from 0 to 100, with higher scores indicating worse quality of life. Their average rating was 66.
Get a check of their tender points -- parts of the body that are often sensitive in fibromyalgia patients.
The researchers then split the patients into two groups.
For a month, one group of patients took nabilone daily. The other group took a placebo pill. The patients didn't know which pill they were taking.
After a month of nabilone treatment, fibromyalgia pain was less intense and quality of life had improved. No such changes were seen with the placebo.
Nabilone treatment didn't affect the patients' number of tender points. And it didn't cure fibromyalgia pain -- when patients stopped taking nabilone, their fibromyalgia pain returned to its former intensity.
Nabilone was well tolerated, but side effects were more commonly reported in the nabilone group. Those side effects -- which included drowsiness, dry mouth, vertigo, and movement problems -- were "generally mild," write the researchers.
Longer studies are needed to track the long-term effects, note the University of Manitoba's Ryan Quinlan Skrabek, MD, and colleagues.
Their study appears in the February edition of The Journal of Pain.
SOURCES: Skrabek, R. The Journal of Pain, February 2008; vol 9: pp 164-173.
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Have any of you heard about and/or tried a supplement called Ribose? If so, I'd love to hear about your experience with it.
I just read a magazine article about a woman with FM who tried it (it's a natural sugar) after hearing about it on a radio program. The doctor on that program said that Ribose can "cure" (his words) achiness and will boost energy. So, she tried it and found that it did just that. She said that after just a short time of taking 5 grams a day, she is nearly pain free and has tons of energy.
I did some research and it supposedly is also beneficial for the heart. I didn't see anything about negative side effects except for some problems with loose stools (which for those of us on opoids might not be such a bad thing). I did read that it works better if you take it with some magnesium and coQ10.
I didn't order the brand (Corvelen) mentioned in the article due to cost. I order most all of my supplements from iherb.com. So, I checked there and they have it for about 1/2 the price and it is from the same supplier as the Corvelen (Bioenergy Life Science). I should have it by Monday. I'll let you know how it goes. I have been so achy lately and have zero energy (nothing new for me) so I really hope it does work for me.
Here is a link to a report about a woman Surgeon with FM who added Ribose to her treatment regimen. She used the actual product mentioned above (Corvelen):
http://www.immunesupport.com/library/showarticle.cfm/id/6225
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Tomorrow I plan on finding a new Dr to treat my FM and be my Dr in general. I'll also want a referral (actually two) to a FM specialist in my area. I also made my shoulder a lot worse and after talking to two Dr friends of mine they both said it could be my rotator cuff or a detatched labrum.
I will be upfront of what I was accused of and that the
Dr wasn't helping my pain. I'm seeking advice on what to say as not to look like a drug seeker! LOL! I have one oxy left and that's all that's been helping my shoulder. My FM flare ups is actually getting better. I have a great massage therapist that works on my FM and MPS. Any advice is much appreciated.
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And I'm not sure why. I was told by the office that a letter was sent out yesterday 'releasing' me as a patient. I have fallen into such despair. Now I have to find a new Dr for myself and my infant son. Plus what happens to the meds she Rx'd me, will I still be able to refill them? I just don't know what to do!
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