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What Worked for Me

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PVLady

New Member
About a year ago I was in the health food store browsing - I ran across two product (the same company) one is Miracle Reds and the other is Miracle Greens.

This is a powder you mix with water or any other liquid. If you read the ingredients - it is very strong antioxidants. The good thing is the taste of both products if very bland and easy to drink.

Back to the beginning, when I started the Miracle Reds in 1 week I knew I was feeling better. I have now gone through several containers. I have no more pain and my stamina is fine.

I still have sleep problems and underlying, I know I still have Epstein Barr to deal with. Even though I feel pretty normal now - if I push and do not get enough rest, my body will let me know. I recently had to take a business trip and even though I was tired, I pushed one day too much and wound up feeling like I had stomach flu with all the symptoms.

For many years I wasted money on all sorts of supplements but this time something worked.
 

TeaBisqit

Member
So far, hormones and acidophilus/probiotics.

Since my doctor put me on Levothyroxine for the Hashimoto's, my chronically swollen right lymph gland in my neck isn't swollen anymore. It has been swollen since the 80's. So that's amazing. All the swollen glands at my throat are back to normal.

I've also started on Trinessa birth control pills. No more irregular periods and I feel more normal on them.

The acidophilus is for the acid reflux. And it is helping. I had taken two of them last night, they are 50 billion each. And when I woke up today, I didn't have any heartburn for over eight hours. I didn't have to take anything for it. It was amazing. I only started to get alittle heartburn after dinner and then I took another acidophilus and it's better. So, so far, I don't have to eat four pepcid ac's a day anymore. That is a big deal.

I have more stamina. I'm tired, but I'm lasting a bit longer doing things. I went out with a friend tonight to Wendy's and I wasn't nearly as dead as I've been all year. I felt pretty okay, just tired.

So all this really is helping me. I also take flexeril when I have back pain, but that's gotten better. And when I really can't sleep, I'll take this tylenol/benzaprine combo that helps.
 

Uranus

New Member
Something that really helped me sleep at night, and helped ease the pain, was the ChiliPad: http://www.chilitechnology.com/ It's a mattress pad - they make them in all bed sizes. You can set the temperature of your bed anywhere between 46 and 118 degrees. Cooling off the bed by 15 degrees every night helped me get to sleep.
 

tigercat411

New Member
Dr put me on Celexa and xanac- (after a year- its still working!!!!)
I have days when I dont even HAVE TO LAY DOWN!!!!! hooo rahhhh
 

siwmo

New Member
I don't have a lot of answers yet, but finally made a stand after being sent to many specialists over the last 3 years. All tests, mri's, ultra sounds turn out negative so their answer was depression drugs. Of course you are depressed when you know something is wrong and doctors think it is your head. Stopped depression medicine and found a rhemotoligist to see. No longer have to rely on Primary care dr that didn't have a clue. Kept checking with people to find what doctors they used and are now in remission. Going to see him in January. Will update after seeing him.


swkc
 

ImportantCargo

New Member
I wish this 2 -1/4 year post could be consolidated in a database so that you could see if there were any "common denominators". So many different things works for different people - which ones were the most popular so that we couldspend less money trying so many things?
 

granmaw09

Member
Hi, what's the deal with getting rid of your non-stick pans? Do they have something to do with Fibro? Never heard of that before. Just wondering is all.
 

granmaw09

Member
How long have you been taking this medicine? How many miligrams are you taking also of it? I've only been on it since Dec. If you're taking the other meds. then how do you know if Neurontin is helping? Just curious is all. granmaw09
 

lalasland

New Member
I have had very BAD Fibro 5 yrs. I have tried & done almost everything this site & others have told me to try. Everything 4 pain..sleep meds.. xanex..just look at all your 'Fibro' coaktail's & I'm sure I've tried them all...I then was sent this artical by another Fibro Friend ..PLEASE READ http://www.cnn.com:80/2010/HEALTH/02/22/medical.marijuana/index.html
and RAN to my Dr. [ at KAISER!!] & he consulted the Pain Managment Dr's & I was given a script 4 Dronabinol [Marinol]...2.5 mg. 4 times a day. It has been a month now & I can feel safe in saying..I'm a HUMAN BEING again!!...PLEASE PLEASE take this artical 2 your Dr's & ask them 2 let u try it..they need 2 trust you & b BRAVE Dr's...I have reduced my other med's as well ..which is such a GOOD thing...I pray your Dr's have the compassion mine did as he has watched me suffer & try everthing 4 the last 5 yrs..GOD BLESS him & GOOD LUCK with your continued journy 4 relief of this illness!!..I just had 2 share this..It has helped with my energy, brain fog, sleep, fatigue, & best of all FLAIRS & daily pain!! Now! CALL YOU DR.!!!!
 

Sue50

New Member
for the past several months I have been working on improving my life. I have several professionals helping me. I think the most important one is the fibro specialist at a rheumatolygy clinic. She suggested that I get a sleep study and I found out that I have sleep apnea. The sleep study Dr. told me that everyone with a diagnosis of Fm should have a sleep study. When you have sleep apnea you could have a build up of carbon dioxide which can cause pain among alot of other things. I was amazed when I googled sleep apnea.
I also went to an endocrine specialist and I have hypothyroidism. She did the total panel of thyroid hormones which several drs. had refused to do for me. my thyroid tests had always come back normal. the specialist discovered my body doesn't have the ability to convert the t4 to t3, my t3 was almost non existent, so now I take 2 thyroid meds. I went to an allergist and discovered I was allergic to my cat, amongst other things. I had to give away my cat, but I feel better now, the good news is I'm not allergic to dogs :) I'm going to physical therapy and found out that one leg is shorter than the other which can cause all over body pain, so now I have a lift in one shoe. I found out I had a huge vitamin deficiency, now take alot of supplements and eat whole foods and alot of fruit and veggies. Also, fish oil has helped, I had refused this before because I was vegetarian, but now eat chicken and tuna. I just went to the dermatoligist so I can find out what the skin bumps are, waiting for results on this.
I use a tens unit and lidocaine patches for back pain. Also found out my white blood cell count is low so I'm waiting for this to be investigated. Stopped the SNRI med. I can think better now!!
So that is my story, hope it helps someone :)
I would also advise Dr. Teitelbaums book From Fatigued to Fantastic, so far he has been right about several of the problems that fibro people have that can be helped.
 

dorrene

New Member
49yrs old RN, Fibro started 1982 CFS started 1997 plus Restless Leg Syndrome 20 yrs and IBS

Right now I'm back to normal. Took years to find the right supplements that really work for me.
I believe the CFS is caused by a virus or two so I try boost my immune system.

L-Tryptophan and B6 (for sleep)
B12 sublingal (brain & energy)

Thymus gland extract (immune support) Reshi mushroom (immune support) Green tea capsules (immune support) TRANFER FACTORS (immune support) VERY IMPORTANT for immune support keeps the viruses under control. Yin Chiao Chinese pills (immune support0

Culling pills (chinese meds)for IBS, Probotics ( IBS) the kind that have to be kept in refrig, 50 billion a capsule for IBS
Hawthorn ticture ( heart ) Eleuthero Root (adrenal support) Astragalus (energy)

CoQ10 300-600mg (exhasution, heart) Acetyl L-carnitine 1500mg/day (brain & pain, memory, brain fog) VERY IMPORTANT, Ribose 5gm up to 3x day All these increase energy helps CFS and Fibro

Vitamin D3 2000u to 10000u /day VERY IMPORTANT much less pain since I started taking two years ago.

Cal/mg/zinc liquad (for RLS)

Lots of vitamins: B12, all the B's, D, C, E, Cal/mg/zinc Fresh vegie and fruit juices Healthy diet NO SUGAR, FIBER, NO JUNK FOOD ie Wendys, Burger King, Home cooked and organic ismuch better for you. Drink only filtered water.

I take thyroid too, levothyoxine and T3. I have had no problems with them but you do need a endocrine doc or a friendly doc to watch you closely at first ( regular lab tests). Thyroid has decreased my pain whenever I stop or reduce the pain comes back.

Something that helps with the Fibro pain, I sleep on a magnet mattress pad that has a lot of strong magnets.

For exercise walks and yoga are a good start.


I take almost all of these every day and now I have my life back.
[This Message was Edited on 06/08/2010]
 

Amyiable

New Member
I had the same experience. My pain just vanished once I got my ft3 in the top 1/3 of the lab range. Before I figured that out, my pain was horrible. Had trouble dressing, opening doors, pain just laying in bed. Very bad.

My rheummy didn't understand it. NO more Humira, Enbrel, Methotrexate. It's been 8 yrs since I began dessicated thyroid meds & never looked back. I still deal with some fatigue, but it isn't nearly as bad. And of course, no pain. Bones improved too, which never happens with the synthetic stuff.

Mainstream doctors don't like that med, but none of their complaints are science based. I nearly died at their hands, because they want to rely on the TSH test, which is a pituitary hormone (not a thyroid hormone). I go to a Integrative Medical doctor. He's much smarter.

Amy
 

dorrene

New Member
Yes, the thyroid cut my pain in half. Now taking D3, Magnesium and Acetyl L-Carnitine for fibro I only have pain when I'm coming down with a virus.

Dorrene
[This Message was Edited on 06/10/2010]
 

dorrene

New Member
I've been sleeping on one of these magnet mattress pads since 2000. I bought one because at the time fibro patients were having good results relieving their pain etc...I don't like being without my pad for very long. You might not notice a difference at first I think it takes some time for the full effect.

Dorrene
 
When I was a child, I was very active physically (playing basketball, swimming, hiking, etc.) Every once in awhile, however, my legs would lock up and I couldn't bend them. At first they thought it was polio, but I didn't run a fever, so they sent me to bed for a day and my legs would recover.

In my 40s my fibro became so bad I wanted to die. I didn't know what was wrong at the time. I heard about a workshop on fibro so I went and it was such a relief to know that there were others with the same symptoms. I pursued my problem with doctors and my own doctor didn't believe in fibro; another specialist that dealt with rheumatoid diseases tested me but didn't know if what I had was fibro or just low thyroid. Later, under the care of another doctor, my thyroid was brought up to normal but the fibro symptoms remained.

The only thing that the doctors seemed to have available was anti-depressants. These made it impossible to for me to think clearly as I needed to do for my "research oriented career" so I decided not to take them. Meanwhile I did my own research and discovered that one didn't need anti-depressants to boost seratonin levels so ones body would produce melatonin to sleep soundly at night. One could buy melatonin over the counter and it worked fine.

For awhile, I also took malic acid with magnesium which helped boost my energy, however, what seemed the most hopeful was reading about guaifenesin. I checked with my doctor and after taking a few tests to make double sure that guai. wouldn't have any side effects, she gave me her blessing to work out the best dosage on my own. 6 weeks after beginning it, I felt a muscle relax for the first time in probably 15 years.

I continue to take it in the morning and before bedtime and I am able to recover somewhat from the day's activity. A massage once a month helps as well to keep me going.

The world out there has many amateur doctors willing to discount ones aches and pains, offer remedies such as "just walk and exercise more", etc.. I find it better to keep my pain to myself and get by as best I can.

This has been what has helped ME the most, but it is still like walking a tightrope: you have to keep going but watch your step and try to keep everything in balance. Good luck to all of you out there. I am now 72 and life is much brighter than it was 30 years ago.
[This Message was Edited on 06/20/2010]
 

u&iraok

New Member
Fixing my digestion and taking Betaine HCL, enzymes, probiotics and fermented foods

Repairing my endocrine system

Killing viruses and infections with MMS

Fixing nutrient deficiencies

Eating well

Doing what I can to sleep better

CoQ10
Vit D
Vit C
B Vitamins
Good fats/oils
Whey powder
Antioxidants and greens powder
Minerals

Exercising a little bit

Stretching & massage

Working (lightly) in garden, being in nature

Budgeting my energy

Avoiding stress (yeah right!)

Avoiding chemicals

Looking at the bright side--if I have to lay down a lot well then I can read lots of good books and watch some good shows on tv, can avoid events I didn't want to go to anyway


[This Message was Edited on 06/29/2010]
 

Juscindy

New Member
I found something that is working very well for me. It's called low dose naltrexone (LDN). I've been on it for a month now and I feel better than I have in years! Prior to taking this med I had been taking vicodin to deal with my pain. I haven't needed to take one in weeks now. I have energy and I just plain feel good more days. I hope others will look this up online and learn about. It's an old, known, very safe drug that was used in large doses ( I think I read 300mg) to treat drug addiction. It's used for FM in vey low dosages (4.5mg). It has very low side effects that go away over the first two or three weeks and it has few drug interaction precautions. the way it works is this (mind you this is my understanding of it and I would reccommend doing your own reading about this), it bind (for a short time) to the same receptors in the brain that opiates do, blocking them for a short time. These same receptors are also used by endorphins so when they receptors are blocked the body thinks it is low on endorphons and produces more. Endorphins are the bodys natural pain blocker. The results are amazing! I took my first dose at bedtime and the next morning I woke up feeling better! I could stretch and I didn't have the joint aches! I had energy too. And the best thing was I plain felt good! Now, this is no cure...I still have flares from the weather and stuff, but I can get twice as much done each day. In fact I feel so good some days I have to make myself be careful not to over do it and throw myself into a flare.

Most doctors do not yet know about this med because it is an old, out of patent drug so no pharmaceutical companies will spend the money to fund the research.

If anyone is interested in finding out about this med I can give a few links:
http://autoimmunedisease.suite101.com/article.cfm/the_promise_of_low_dose_naltrexone_therapy
http://www.ldnscience.org/

You can also call a compunding pharmacy in your area to find out who is prescribing this med and what it is being prescribed for, this is what your doctor will want to know.

I hope this helps someone who is hurting
 
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