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Topic: RE: 22 BAD FIBRO and a mommy too HELP
I am so sorry that you are going through this at such a young age. Your case sounds extremely severe. Can I ask: have youbeen tested for other autoimmune disorders? Lupus, and another oft-overlooked disease called Sjogren's Syndrome? Fibro can exist along with these, but of course the combo can make it much worse.
I know a lot of people that have found relief in hypnosis,meditation,Reiki, acupunture and massage when all else has failed.
I a not sure where you lie, but in Boston, they have The Benson Henry Mind-Body Institute. There is a very tight connection between your mind and body reactions and neither excludes the other. A good rheumatologist should help. But because you're young, I would strongly recommend researching beyond traditional meds and the simple diagnosis of fibromyalgia-just in case you are dealing wth something more.
I am a nurse, my daughter and I have fibro and she has Sogrens-average time to diagnose-8 years.
I know a lot of people that have found relief in hypnosis,meditation,Reiki, acupunture and massage when all else has failed.
I a not sure where you lie, but in Boston, they have The Benson Henry Mind-Body Institute. There is a very tight connection between your mind and body reactions and neither excludes the other. A good rheumatologist should help. But because you're young, I would strongly recommend researching beyond traditional meds and the simple diagnosis of fibromyalgia-just in case you are dealing wth something more.
I am a nurse, my daughter and I have fibro and she has Sogrens-average time to diagnose-8 years.
Topic: RE: I just feel like whining, you don't have to read...
Highest Weight/Surgery Weight/Current Weight/Goal
426.4/356/216.8/165?
Positioning is part of my problem...there are only 3 positions to sleep in - either side or my back. Last night was a better night. I think I only got up 3 times. I'm still waiting for the Cymbalta to kick in. See the PCP and Rheumie at the beginning of next month. I'll get the rheumie involved. In the meantime, hopefully today will be a decent day.
Elli
Elli
Highest Weight/Surgery Weight/Current Weight/Goal
426.4/356/216.8/165?
Topic: RE: tens unit
I have one and love it.I would not be able to work with out it. I use it on my back. Now once I take it off the pain is back. I have back issues along iwth Fibo.
Kendra
Kendra
Topic: RE: energy
I have had alot of pain from Fibromyalgia and Curpal Tunnel, Back, Knees etc, inspite of having my surgery and losing over 100 lbs. The pain pills were only making my stomach worse. I wanted a natural choice so I found Chlorophyll and it has done wonders for me I have less pain and overall feel so much better. I canceled a procedure with the pain managetment Dr. this week. I got the Liquid 50 mg and it has a mint flavor take tablespoon in water or jucie. I haven't foind something that I liked the taste with so I just take the tablespoon and then I drink 8 oz of crystal lite or whatever right after. I think when you goole Chlorophyll it will amaze what it can help. At HEB on the computer I put the product name in and the first think that came up was for preatmen of Fibromyalgia. Try it you will like it
Topic: RE: tens unit
It helps for only a short time, but for me it is like a massage, depending on your setting and if you can handle the strange pulsing feeling.
Topic: RE: Fibro "fog"
Heather, I was on neurontin (or neurotten as we nicknamed it on the PN board at Neuropathy.org) for several years and I honestly belive it's partially responsible for my memory issues still today and I haven't been on it in years.
Gabapentin also known as Neurontin usually prescribed for Epilpsy. It's most common OFF label use is Peripheral Neropathy pain. How it got to be used for Fibro???? I use warm water for my fibro. I use Topamax for my PN and Tramadol/Amytriptyline for the breakthru pain.
Neurontin needs to be tritated up to rather large doses for MOST (not all) patients to even notice an effect. And then your body has a bad habit of getting use to that dose, which develops into an upward spiral of ever increasing doses.
It's typically given to patients with Peripheral Neuropathy
MedlinePlus Drug Information: Gabapentin
In the three years that I was on Neurontin, I had all of these:
drowsiness
tiredness or weakness
dizziness
headache
shaking of a part of your body that you cannot control
double or blurred vision
unsteadiness
memory problems
diarrhea
dry mouth
constipation
weight gain
swelling of the hands, feet, ankles, or lower legs
What they don't mention is that the memory issues NEVER go away once you've had them.
Drowsiness/tiredness/weakness did not come even close to describing what I felt and most of my PN friends experienced.
When I first started and every time I tritated up in dosage, I would be absolutely and completely useless to my family. I started at 1800 mgs (felt no relief) and got to 2100 mgs before feeling a difference. By the time I finished I was taking 4800 mgs a day. Some people I know were taking 7000 mgs with no relief.
I got off the neurontin finally in 2006 after coming down to 300 mgs between 2003 and 2006.
I was at 195 when I started neurontine, and hit my highest weight of 250 while on it.
PLEASE be careful taking that drug. Now in fairness, my husband is on 600 mgs right now and is not experiencing any of the issues I did. It hits different people different ways.
Liz
Gabapentin also known as Neurontin usually prescribed for Epilpsy. It's most common OFF label use is Peripheral Neropathy pain. How it got to be used for Fibro???? I use warm water for my fibro. I use Topamax for my PN and Tramadol/Amytriptyline for the breakthru pain.
Neurontin needs to be tritated up to rather large doses for MOST (not all) patients to even notice an effect. And then your body has a bad habit of getting use to that dose, which develops into an upward spiral of ever increasing doses.
It's typically given to patients with Peripheral Neuropathy
MedlinePlus Drug Information: Gabapentin
In the three years that I was on Neurontin, I had all of these:
drowsiness
tiredness or weakness
dizziness
headache
shaking of a part of your body that you cannot control
double or blurred vision
unsteadiness
memory problems
diarrhea
dry mouth
constipation
weight gain
swelling of the hands, feet, ankles, or lower legs
What they don't mention is that the memory issues NEVER go away once you've had them.
Drowsiness/tiredness/weakness did not come even close to describing what I felt and most of my PN friends experienced.
When I first started and every time I tritated up in dosage, I would be absolutely and completely useless to my family. I started at 1800 mgs (felt no relief) and got to 2100 mgs before feeling a difference. By the time I finished I was taking 4800 mgs a day. Some people I know were taking 7000 mgs with no relief.
I got off the neurontin finally in 2006 after coming down to 300 mgs between 2003 and 2006.
I was at 195 when I started neurontine, and hit my highest weight of 250 while on it.
PLEASE be careful taking that drug. Now in fairness, my husband is on 600 mgs right now and is not experiencing any of the issues I did. It hits different people different ways.
Liz
Duodenal Switch (Lap) 01-24-11 | Surgeon: Stephen Boyce | High weight: 250 in 2002 | Surgery weight: 203 | Lowest weight: 121 | Current weight: 135 | Goal weight: 135
Topic: RE: Fibro "fog"
Heather...please talk to your doctor about Prozac. I loved that drug at first and then I was super happy on Prozac...used to even say, "Prozac in the morning...it's a beautiful thing!" Next thing that happened though is that I found myself kind of zoning, not caring what happened...like it didn't matter what was going on around me...not good with little kids!!!
As far as the keys, please put a dish on the counter where you always put your keys or a peg board on the wall where you always hang them. You will have to do little things like this in order to keep from losing your mind on a daily basis, besides if you put them up high enough the children will not "help" you by losing them. (Losing keys is normal...even my 16 yr old loses the keys sometimes!)
As far as the keys, please put a dish on the counter where you always put your keys or a peg board on the wall where you always hang them. You will have to do little things like this in order to keep from losing your mind on a daily basis, besides if you put them up high enough the children will not "help" you by losing them. (Losing keys is normal...even my 16 yr old loses the keys sometimes!)
Topic: RE: Fibro "fog"
Love it Liz!!! Someone has to set these "God's gift to the world" doctors straight!
Topic: RE: I just feel like whining, you don't have to read...
I take Lyrica, Soma, Ativan and Melatonin to help me sleep at night. I sometimes wake up in pain in the middle of the night and then go back to sleep in my recliner...because the change in position helps. I hope you can find what works for you.
Topic: RE: tens unit
I wouldn't really think it would do too much because most of us have whole body pain so we'd have to apply it all over. Don't think that would work for most of us and it doesn't last very long at least the few times I've had it used for other things.
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