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Avatar universal

Have Fibromyalgia; I'm new to this group 2014

Hello.  I am new here.  It is so hard to have an illness that you can't really talk about to people around you.  I want to keep my job and I feel that if I talk about how sick I feel I might lose my job.

I used to be a normal person but I have felt very ill for about four and 1/2 years.  
My question is:   has anyone tried  coconut oil to treat fibromyalgia with any success?

My fibro started after a viral infection...then I had terrible muscle spasms and a strange weakness in my neck, as though I could not hold up my head.   I had a lot of pain in my hips, buttocks, and upper back in the trapezius area.  I was at the end of perimenopause and I had recently stopped taking birth control pills.  The spasms stopped after a couple of months  and my doctor put me on trazadone.  It helped some, and he suggested that I try lyrica.  I didn't like that, and I then was put on gabapentin at night.  The pain shifts around...sometimes it is in hands and elbows, and always in my upper back.  
I was trying to work and found it almost impossible to get out of bed in the morning.
I have been put on several antidepressants over the years, and  non of them have helped much.
I am not really depressed, except about being sick.
I am lucky to have a good family but I think that my husband does not even understand what I feel.
Right now I am  only taking amitriptyline and wellbutrin...and carysoprodol.  I have only recently started these.
I have three doctors and they do not agree on treatment.  
The neurologist was upset that I started changing up the meds....he suggested the Carysoprodol.  It does help me sleep but I never feel refreshed when I wake up.
I am really desperate to get some relief but I actually feel worse.  After some travel this summer  (I went to Costa Rica this summer) I am exhausted.  

I have tried so many supplements....as suggested by Dr. Jacob Titelbaum.  I have not found that the supplements helped much, nor the vitamin powders he suggests.  
I think that I eat mostly healthy foods.  I don't have enough energy to exercise much, but I have been riding my bicycle a little bit this summer because my foot hurts too much to walk right now.  

I am sorry that this is so long.  I haven't told you everything.   I would like to discuss things that have helped other people.  I feel that most of my experiments have failed.  I have read about low-dose naltraxone but have never tried it.  

thanks for listening.   Alice
12 Responses
1530171 tn?1448133193
HI Alice and welcome to our community.

Coconut oil, what can I say?
To me it is the ultimate Functional Food, a gift from nature
and a life saver!

Getting fibro from a viral infection makes me suspect that there still might be an underlying low grade infectious condition present.
Do a search here for Dr. Garth Nicolson, an expert in mycoplasma infections and co-infections and a part time contributor in MedHelp for more details.

If you want some suggestions to help you deal with fibro please do a search  here, under IWILLDOTHIS and it will bring you to a thread which I started a while back, full of suggestions and remedies.

I hope this helps.

Best wishes.
Niko

Avatar universal
Thank you for answering me.  I am getting so tired that it is to the point that I think I may have to quit working.  I just don't have the energy to teach school...and I'm dreading the beginning of the school year. I think that doctors have given me every drug possible for Fibromyalgia, including cymbalta.  I may not have given Cymbalta enough of a chance.  I keep hoping that something the doctor suggests might work because ....I used to have faith in doctors until I got sick. The strange thing is that I feel very listless and tired but if I get on my bicycle I actually feel better and sometimes forget that I usually feel so bad.
I just bought a product from a friend who is selling an expensive fruit and veg  supplement in capsules.  You are supposed to feel more energy from this but I am not feeling more energy.
   Earlier this summer I had some bloodwork and at first they told me that I tested positive for Hep C.  Then after the second test (a viral load test), they said it was a false positive and that I DIDN'T have hepatitis C.  
WHen I was young I had herpes at around age 23.....Sometimes I wonder if the herpes could be partly the cause of my chronic fatigue.
So I am blathering on.   I will look at the thread you mentioned.  thank you again.
1530171 tn?1448133193
Alice, it is nice to support a friend by purchasing the energy capsules, however, I think that they work much better in theory, than in real life!

In your situation, the first thing I would do is "ditch" all carbs, including artificial sugars and anything containing gluten.
This means that you have to screen your shampoo, your night cream,
your moisturizers, packaged nuts, potato chips etc. It's almost in everything!!
Gluten to my opinion is probably one of the most offensive molecule to the  immune system  and a suspected factor in many autoimmune diseases.

Another reason I suggest carb avoidance, is because a muscle toxin called tartaric acid is very prevelant in CFS & FMS. It feeds off carbs (indirectly) and it interferes with the Kreb's cycle, a series of eight reactions that occur in the mitochondrion, the energy producing part of the cell.
Tartaric acid is an antagonist to malic acid (vital in metabolism), so supplementation with organic raw ACV -the top source for malic acid-
would help tremendously.

Another reason is that carbs feed fungal/yeast organisms and when there's a yeast overgrowth, fatigue and tiredessness, set in.
The next stage is a candida infection, which may cause numerous unwanted symptoms.

One more thing to rule out is low thyroid function. I find myself repeating this to many members, only because it is approaching epidemic levels
and it continues to be undiagnosed, underdiagnosed or worse: Mis-diagnosed!  This consequently leaves great numbers of patients untreated,
undertreated or mistreated, many of which develop very serious conditions, including heart disease!

Should you be interested to have this checked, you can do on your own:
Dr. Barnes Basal Temeprature Test. Just follow the simple online instructions precisely.

What type of herpes did you have at 23?

Take care.
Niko


Avatar universal
Thanks for answering -  I know ...I think  the veg  caps are a waste of money ....she sold me these shakes as well.  I'm not even sure what the purpose of those would be and they don't taste very good either.

I am taking a lot of drugs now and  honestly I don't know if they work.  I am glad that I sleep every night but it would be nice to wake up and feel good instead of waking up half dead.  

When you say ditch all carbs, do you mean not eating fruit as well?
I have experimented with not eating any wheat, and I get terrible cravings for it.

I have had a lot of tests - for  lyme disease,  rhumatoid arthritis,   but everything comes back negative.   I even had a very expensive scan...inside one of those tubes that give other people anxiety attacks (it didn't bother me)

I never had a test for herpes but I had the classic symptoms of the first infection....I had sore thighs and one blister - agenital herpes outbreak.  Since then and that was 30 years ago almost exactly,  I have had a lot of recurrences of herpes.  Initially I had it almost monthly for a year.  But after that I have only had it come back a few times in the exact same spot.  This is gross to talk about.

Honestly I am worried about the false positive Hep C result...I am wondering if maybe I really do have Hep C  but they just failed with their test.  I have never taken drugs through needles...I don't have tatoos.. and I'm not a gay man....those are the  highest risk factors for Hep C.

Well, again, thanks for your help.  Alice
1530171 tn?1448133193
Herpes  never goes away, but it remains mostly dormant, with periodic outbreaks , specially when your immune system is suppressed

As for the Hep.C, you don`t fit the profile, specially when the viral load test returned undetectable levels of infection.

On the other hand, the terrible cravings when avoiding wheat, is usually
a tell-tale sign of Candida. These fungal infectious organisms are messing with your brain and create these cravings, so they can grow and spread further into your body , causing disturbances of all sorts.
Sorry for the graphic explanation.
You may do a `Saliva Test for Candida`on your own. Just look it up online-simple and fast. It is not diagnostic, but it is very indicative of Candida,
specially when the saliva is fairly stringy and thick.

Fruit contains ample amounts of sugar, so on  a CF regimen it is definitely out.
(Dairy would be out too, as it contains carbs as well)

I realize, I`m offering you a lot of information you really don`t want to hear.
The upside of this though is, that it could potentially help you feel much better.

Take care.
Niko
Avatar universal
I appreciate your suggestions.   I have tried low carb before...maybe 12 years ago with great weight loss very quickly....but I found it very difficult to sustain.   I would miss the fruit a lot at this point.   I guess the point is you have to eat more vegetables.  If I felt better I would try it.
  But will consider...... I thought that with candida it would be easy to know if you had that because I thought it was like a yeast infection.

Many people have suggested that I pursue a Lyme disease test  from an independent lab.   My family doctor just rolled his eyes and said that he had already given me the Mayo clinic's best test.   I know there is a great divide between traditional docs and the LLMD's.   How do you know whether you are going to a reputable doctor?  I think it is tricky to find that out.  I live in a rural area and I am far away from any major city.

But I am definitely sick of being sick and tired!   I see that you are a Reiki practitioner.   I would like to know more about that.  

hope you had a good weekend.    Alice
1530171 tn?1448133193
Alice, I'm off to Europe early in the morning, so I'll touch base with you in a few days, after I'm settled in.

Candida has a thousand faces and it's diagnosis is not active actively pursued by most conventional doctors. You are likely referring to thrush or localized yeast infections.
When Candida becomes a systemic infection it can weaken your intestinal lining, compromise your immune system and if left untreated, lead to more serious conditions, like CFS, FMS and others.

Lyme Disease is notoriously difficult to diagnose and to treat.
It's recommended to consult with an LLMD and get testing done by IGENEX Labs, however, best  approach is to rule out first suspected conditions which are simpler to investigate, than Lyme's Disease.

Reiki info-->. next post. Have to catch some ZZZs!

Take care
Niko

Avatar universal
Niko -  have a great trip to Europe.  In the meantime I am trying to go to a low carb diet without any wheat.
I'll let you know how that goes.

Alice
Avatar universal
I have debilitating fibromyalgia. The key for me was drinking lots of water, no soda, ibuprofen as needed for inflammation, and combining Cymbalta with Lyrica. Without that combo, I literally could not get out of bed! :)
1530171 tn?1448133193
Hi Alice.

Reiki is a form of hands on ancient healing art based on energy transfer.
It is holistic and it works on the body-mind-spirit
by stimulating or our healing abilities.
Rei means Universal and Ki is the energy/vitality that gives
life to all living beings and things.

Many cultures have used healing techniques which stimulate the
flow of Ki, however, Reiki is a profound discipline which works
by opening and re-balancing the chakras (energy centers) and
facilitate the flow of Universal energy throughout the body
(when a full treatment is done).
The immune system and the body's own healing abilities get stimulated
and I find that the results are phenomenal after 4-5 treatments within one week, where the body receives a significant boost of Reiki energy flow.

My daughter is a Reiki Master and I'm at level 2. Hopefully this fall, I will receive my training and attunement for Reiki Master level.

Now, we're all settled down here (Crete) well and thank god for a/c and the sea-lol! -as there's a heat wave which seems to be easing-off a bit.

I hope your diet helps you feel better, which may take time to show results, (some people  though may experience improvement within days) but you need to stay strong, to stick with it.

Best wishes.
Niko


Avatar universal
Thanks for writing.   Crete sounds wonderful.  I have only seen Greece through movies.  I hope you have a great time there.  
I have been trying to eat better...
I am feeling somewhat better lately probably because I have been riding my bicycle every day for fun, distraction, and exercise.  I really love it.  But tomorrow I have to go back to full time work and that is daunting.
I want to keep working without feeling overwhelmed.
Interesting about the Reiki.  Where did you study to learn about that?

Alice
1530171 tn?1448133193
Hey Alice, cycling is one of my fav. forms of exercise, however, I wouldn't
consider cycling down here in Crete. You gotta have nerves of steel and a
heightened sense of adventure to ride a bike, in this... insane island traffic!

I was always drawn to energy modalities and Reiki appealed to me tremendously.
When it was offered at the college where my daughter studied Holistic Health, I signed up immediately.
It was a great complement to the other therapies I had studied and one of the few, where the person who facilitates/channels it, receives as much benefit as the client/patient.

BTW low dose Naltrexone has worked well for 2 people who I personally know, who both suffer from MS and both experienced total remission.
Now, I don't think this is typical, but it's worth a try.
The challenge is to find a willing doctor to sign the script, as it is off label
AND it must come from a compounding pharmacy ( because of the low dose).

Hang in there, Alice. My thoughts are with you.

Blessings.
Niko
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