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Posted 9/11/2013 8:23 PM (GMT 0)
  1. how long have you had Fibro.?

  2. What if any meds do you take?

  3. At what dosages do you take these meds?

  4. Have you had to change meds during your hx with fibro.?

  5. Has anyone taken Topamax for Fibro.?

Posted 9/11/2013 8:33 PM (GMT 0)
oh and one more....

where are you having the most pain?

mine is neck, head, shoulders, arms

Posted 9/11/2013 8:41 PM (GMT 0)
1. Diagnosed 2004

2. For fibro-tramadol, hydrocodone, generic ambien, plus a muscle relaxer.

3. I limit tramadol to 100 mg a day, and my hydrocodone is 5/500, and on a normal day I cut it in half.

4. I have tried cymbalta, and it wasn't useful for me. I also preferred rozerem for sleep, but it was too expensive.

5. Nope.

6. Most pain is usually shoulder blades, butt, thighs, and ankles (which is more arthritis)
Posted 9/12/2013 1:33 PM (GMT 0)
Diagnosed 2013
Use Baclofen (muscle relaxer) or Tramadol only when pain is level 7 or higher
Most of my pain is right lower side of back/right hip/and arms
Posted 9/12/2013 4:34 PM (GMT 0)
1. how long have you had Fibro.?

27 years


Rather than to answer each of 2-4 individually, let me just say, I've tried 2 or 3 of those "hard-core" man made drugs which are supposedly good for Fibro (for some people) and all they did was whack me out with serious side effects, and yet did absolutely NOTHING for my Fibro symptoms.

If any of that crazy, man made crap actually helps you, then that's great ! Keep doing it.

For myself, I was able to knock my Fibro symptoms down by 95% and my put my severe IBS into 100% remission, with diet and exercise (no... not some little lightweight, half hearted attempts. I mean, by becoming an all out health and fitness freak)

Best wishes,
Fish
Posted 9/12/2013 5:54 PM (GMT 0)
I was diagnosed in 2010.
I take flexeril and hydrocodone as needed. 5 mgs of flexeril and 500/325 of hydrocodone. I do not take daily only when I can't stand the pain. I take a lot of vitamins too and a beta blocker daily for blood pressure. I use Midnite (a melatonin mixture with herbs) for sleep and it works very well with no side effects.

I have tried tramadol, lyrica, Cymbalta, Zoloft and I didn't like the side effects for any of it.

I never took topomax but did take Depakote which is similar for migraine prevention about 10 years ago and I gained 30 lbs on it which I lost as soon as I went off it.
Posted 9/12/2013 6:14 PM (GMT 0)
fish and sawa, PLEASE tell me what natural supplements you take. Sawa in your profile it says you have anxiety, do you take anything for that?

I am going to start the process of weaning off Zoloft since it no longer has any effect on me whatsoever

Then I would like to come off the klonopin too

But I am sooooo sick right now I can't get out of my own way

I am going to try melatonin in place of the klonopin

Posted 9/12/2013 6:59 PM (GMT 0)
I take the following daily:   magnesium, vitamin D3, fish oil, multi-vitamin, Midnite ( sold at Walmart or any drug store, melatonin with lemon balm, and other herbs) works great for sleep, sometimes B-12 for energy and bio-identical progesterone compounded by my pharmacy and vaginal estrodial (estrogen) for vaginal dryness and libido.  The magnesium and progesterone both help anxiety and the Midnite really gives me a good night sleep without drugs.  I also use the Headspace phone app meditations to help me relax.  There are plenty of meditation phone apps available. 

I only use Xanax a couple of times a year if someone dies or I am extremely stressed out.  I use flexeril occasionally as needed for muscle pain and hydrocodone occasionally for pain.  Excedrin migraine helps my migraines. None of these drugs are taken on a regular basis.  I do take a blood pressure pill everyday.

Posted 9/12/2013 7:15 PM (GMT 0)
1. how long have you had Fibro.? only around 9-10 months

2. What if any meds do you take? Currently amitriptyline and loads of supplements /vitamins

3. At what dosages do you take these meds? 50mg

4. Have you had to change meds during your hx with fibro.? yes - nasty reaction to cymbalta, remeron made me too drowsy, amitriptyline only one that dulls pain for me

5. Has anyone taken Topamax for Fibro.? Never heard of it!

Pain is mostly shoulders, neck and tops of legs...fatigue is also a pain for me :o(
Posted 9/12/2013 7:16 PM (GMT 0)
oh yeah - i take melatonin also for sleep...it works for me! Not for a full night, but gives me bursts of lovely sleep
Posted 9/12/2013 7:22 PM (GMT 0)
LAiney--If you plan to wean yourself off medications, please see your doctor for help. It is generally unwise to try to do this on your own.
Posted 9/12/2013 7:46 PM (GMT 0)
1. I have had fibro over 20 years.
2. I take subutex for pain, magnesium, calcium, vitamin D, remron
3. Subutex 8 mg bid, magnesium 400 mg daily, calcium 600 mg daily, 50,000 units of vitamin D weekly, remron 30 mg HS.
4. I have change my meds many times only to find out the more natural I keep it the better I am. I use it take lots of heavy narcotics which caused me to come addicted to them.
5. I took topomax for a very short time for seizures. I hated it. It gave me terible side effects.
6. My pain is in my joints and mostly all over. Something always hurting.

Lainey- if you decide to drop your klonopin make sure it's supervised by your Dr. That is a drug you want to slowly wean off if you take it frequently. Good luck if you decide to change.
Posted 9/12/2013 10:23 PM (GMT 0)
1. 2008 when dx'd but suspected having longer
Only remember when because it was while I was recovering from a car accident
2. Amatriplyne (oh can someone spell that for me)(sp); t3; Percocet; morphine
3. In order of meds listed: 50mg, 30/300, 5/325, 20 mg
4. Yes
5. Topamax: it is a neurological pain relief, daily preventive migraine medication, also used for seizures. This is based on my personal experience. I have a friend whom uses it for seizures. I was one of the patients in my area for the double blind study of Topamax for migraines. I had the real thing. My migraines went from 24-26 times a month to 3-4 a month. Recently I moved from sea level to around 4,000 ft and my migraines came back. I had to restart Topamax. I know the pain relief part because it flukely came up at my last oncology apt when they wanted to give me a pain killer I looked at them and said "if you read my chart you would know I take for migraines daily." So they put me on gabapentin for the nerve pain killer.
Posted 9/12/2013 10:24 PM (GMT 0)
I just remembered on Topamax becareful. you need to taper up on dosages and also ween off it. IE: 5mg week 1 10 mg week 2 so on. Getting off IE: 10mg week 1 5mg week 2
Posted 9/13/2013 3:44 AM (GMT 0)
Lainey, supplements ? Fish oil and Melatonin..... for what it's worth > Maybe a whole 1%, and another 95% being diet and exercise.

If you shoot me an e-mail at > [email protected] , I can give you one potentially very good suggestion that cannot be talked about on this forum :)

Hope you feel a little better soon :)

Fish
Posted 9/13/2013 5:12 AM (GMT 0)

laineyk said...
  1. how long have you had Fibro.?

Diagnosed 9 months ago. Had for 2 years maybe?

  2. What if any meds do you take?

Gabapentin, Tramadol, B12, B6, Folic acid, tylenol, D3

  3. At what dosages do you take these meds?

300mg Gabapentin, 50mg Tramadol, B12- 10,000, B6 ?, Folic Acid 800, Tylenol 200, D3 2 times a week 50,000 

  4. Have you had to change meds during your hx with fibro.?

Gabapentin was added

  5. Has anyone taken Topamax for Fibro.?

Nope

Posted 9/13/2013 8:47 AM (GMT 0)
1. 2009

2. Tramadol, IBU, Vit D, Magnesium Malate, Fish Oil, Ginseng, Ginkgo biloba, Benadryl

3. 100mg, 1200mg, 5000mg, 625mg, 800mg, 60mg, 125mg, 50mg

4. Ive been on Cymbalta, Gabapentin, Topamax, Lyrica and I'm sure I'm forgetting a couple

5. Yes and unfortunately I couldn't handle the side effects
Posted 9/13/2013 2:07 PM (GMT 0)
believe me, I know to wean off these meds slowly. been through it a couple xs.

so I take 200mg mag at night, should I add another 200mg during day?

I take fish oil, and nature made multi for ppl over 50

fish, will do
Posted 9/13/2013 6:02 PM (GMT 0)
LAiney--this is a real question. I am not trying to be a smarty-pants, or obnoxious, or anything. Why are you going on and then off and then back on medications? It sounds from your previous post that you currently take zoloft and clono., but you want to come off of them, and you have taken them and stopped before?

Seriously, if you plan to stop taking medications and go on supplements, still see your doctor. Even medical supplements have risks.
Posted 9/13/2013 9:16 PM (GMT 0)
Myself; here it is in a NUTshell,lol

I 1st went on these meds for anxiety only. came off them because I thought I was able to handle the anxiety

went back on because I was wrong

Now am finding that the Zoloft no longer has ANY effect on me whatsoever, thus the need for clonazepam daily.

I think that the Kloni has caused me to have more issues and am scared that its ruined my chemistry in my head.

I will not have a definitive answer in regards to my having fibromyalgia until RA has seen me and runs tests. But if I do have it (which I am almost positive I do) I want to try to do this a more natural approach
Posted 9/13/2013 10:06 PM (GMT 0)
Sounds great! I hope you find the answers you are looking for!

As you know, when diagnoses start to expand, the amount of pills we take expands with them. Many people do go more natural, or combine only one or two prescription meds with supplements. What's important is that you find the balance that your body and chemistry requires in able for you to function effectively.

Supplements can both positively and negatively affect the system, so to be safe you ought to check them with your doctor or the pharmacist.
Posted 9/27/2013 4:20 AM (GMT 0)
28 years since dx

Meds:
I went through just about everything possible on the market about 15 years ago. From amitrip to Prozac to topomax and dozens I can't remember. Now, I live a relatively normal life and use orphenadrine and tramadol rarely as needed (1x mos, maybe).
Each of the hardcore meds I was on years ago, they tried low, med, and high doses. Now, I use tiny doses of what I do use.

Nutrition has been key - identifying food sensitivities and allergies, eating healthful natural - relatively few processed foods - (I had all the tests, but the best test is to remove foods from your diet and reintroduce one at a time and LISTEN TO YOUR BODY. The process took over 6 months, but it was worth it for the life I've lived since.)

I supplement with curcumin, magnesium, vitamin D, co Q10

I worked up to walking/running 1-2 miles 4x week (slowly!) over a few years.

I see a chiropractor - too often, but adjustments bring relief, and occasionally get massages

Pain: neck, shoulders, back... and just about everywhere else on the worst days (which are rare)
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