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ob2016

Member
Joined
Jan 2, 2016
Messages
11
Reason
DX FIBRO
Diagnosis
08/2015
Country
US
State
ma
I was seen at one of the top hospitals in the US for my symptoms. I saw a rheumatologist, neurologist, infectious disease doctor, allergist, GI, and the pain clinic. I got what I like to call a 'non-diagnosis' of fibromyalgia. I tried a few medications that did more harm then good.

However, I was also seeing a functional medicine doctor, chiropractor, and acupuncturist. And thanks to a new primary care, was also now seeing a nephrologist and a physical therapist. These doctors told me a few interesting things:

-I had a zinc, B12, iron, and vitamin D deficieny
-I had gitelmans syndrome (a kidney problem that causes chronic potassium and magnesium deficiencies)
-I had poor posture that could contribute to back, neck, and head pain
-I had a TMJ disorder that can cause head and neck pain
-I was sensitive to gluten and dairy
-I had a candida overgrowth and leaky gut which is an up and coming topic in the development of autoimmune diseases
-my sleep pattern was extremely abnormal and needed fixing
-stregnthening my pelvic muscles and back muscles could ease pain
-cutting out sugar could do wonders (and it does when I stick to it)
-acupuncture does wonders for IBS
-They all agreed. It is very possible I will feel much better for the rest of my life if I address these issues.


It's funny how traditional/conventional medicine works. Find the disease and treat it with medicine. But I like what alternative therapies offer. An explanation as to why my body is not functioning correctly, what specifically is off balance inside my body, and how I can address it. I am just starting my healing journey but would love to have discussions about it.
 

Loftpat

Senior member
Joined
Aug 12, 2013
Messages
374
Reason
DX FIBRO
Diagnosis
08/2013
Country
US
State
ME
My NP and I have come up with a plan to greatly reduce meds and add additional supplements. It is important to maintain magnesium, B12 and Vitamin D. I've been on this regime a couple years. Recently increased B12 and adding Aceytl l-carnitine. Also take magnesium in the form of magnesium malate. No sugar, no milk, though I eat locally made yogurt for gut balance. Nothing processed (I've slipped on that and suffered), whole foods, lots of veggies, beans and quinoa. I'll likely be more of a food maniac this year. Hoping by being as healthy as I possibly can will help with fibromyalgia. All meds come with side effect and seem to stop working over time. Who wants to just keep adding more....not me. Good luck with your work with functional medicine!
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Wow, it sounds like you found some really good doctors, lucky you! The leaky gut thing makes a lot sense to me if you ask me, that happens when you have been dealing with IBS for very long. You need to take vitamins... because with that disease you are not absorbing all the nutrients you need, specially if you get the runs often. Be careful, it's a vicious circle that can only be fixed with probiotics and changing your diet for good... a very healthy one.
 

gryfalcon

Active member
Joined
Mar 24, 2016
Messages
55
Reason
Caregiver
Diagnosis
06/2011
Country
US
State
TX
I don't believe the doctors. I gave them more than ample opportunity to demonstrate their competence, and they performed no better than your standard snake oil salesman, for my daughter's situation. I have strong evidence that supplements have restored significant function in my daughter. She's not "cured", but she has an effective treatment regimen, now. And, with the supplements to make it possible, she has become more active, which has improved her overall health and fitness, which has led to further improvement. I firmly believe that it is a disruption in chemical processes in the body, because I've seen it, at least for us, and finding those gaps and filling them for a period of time to let the body start to recover and grow stronger, is the key to getting back on your feet. What alternative therapies are offering is natural substances that the body needs, and reduction in substances that stress the body. What doctors offer are powerful chemicals that are foreign to the body and can cause further stress and harm to the body. This is a tradeoff that is worthwhile some patients, but it is a gamble, and should be considered carefully. I wouldn't feed Lyrica to my worst enemy after seeing what it did to my daughter.
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
I don't believe the doctors. I gave them more than ample opportunity to demonstrate their competence, and they performed no better than your standard snake oil salesman, for my daughter's situation. I have strong evidence that supplements have restored significant function in my daughter. She's not "cured", but she has an effective treatment regimen, now. And, with the supplements to make it possible, she has become more active, which has improved her overall health and fitness, which has led to further improvement. I firmly believe that it is a disruption in chemical processes in the body, because I've seen it, at least for us, and finding those gaps and filling them for a period of time to let the body start to recover and grow stronger, is the key to getting back on your feet. What alternative therapies are offering is natural substances that the body needs, and reduction in substances that stress the body. What doctors offer are powerful chemicals that are foreign to the body and can cause further stress and harm to the body. This is a tradeoff that is worthwhile some patients, but it is a gamble, and should be considered carefully. I wouldn't feed Lyrica to my worst enemy after seeing what it did to my daughter.

Same here.... the meds the docs give all come with nasty side effects. I mean look at me! Gained so much weight thanks to a medication the neurologist gave me, a medication I didn't even need, and now I am having the hardest time dropping the weight. Doctors can make things so much worse, so sick of them.
 

gryfalcon

Active member
Joined
Mar 24, 2016
Messages
55
Reason
Caregiver
Diagnosis
06/2011
Country
US
State
TX
We had the same problem. They gave amitriptyline, which is famous for causing weight gain, to my twleve year old with fibro. It did nothing for the fibro, but caused all this weight gain, which was just totally depressing. She quit taking it, didn't feel any worse, but felt so much better about seeing her figure come back. A warm glass of magnesium does so much more for her than that stuff ever did.
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
FL
I have a friend who has fibromyalgia and when she started taking Plexus Slim her pain was greatly reduced after a few days and after a week the pain was gone. Plexus is a health and wellness company who offers products with plant based ingredients. They also have a probiotic called probio5 that is helping a lot of people with candida and autoimmune issues. Plexus also offers pain products. If you are on Facebook go to the search bar and type in Plexus Fibromyalgia and read the testimonies. Plexus doesn't claim to heal, treat or prevent any disease.

Pray you get relief.

Would that organization you work for be plexus?
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
We had the same problem. They gave amitriptyline, which is famous for causing weight gain, to my twleve year old with fibro. It did nothing for the fibro, but caused all this weight gain, which was just totally depressing. She quit taking it, didn't feel any worse, but felt so much better about seeing her figure come back. A warm glass of magnesium does so much more for her than that stuff ever did.

Mine was a beta blocker:/ I did take amitriptyline when I was younger, gained weight, lost it all quite fast after quitting it, but then maaaaaany years later I was dumb enough to take that darn beta blocker. Now I am too lazy and anxious to actually put effort into losing weight (diet). It's amazing how a simple medication can change it all!

I'm glad to read she has lost the weight, it can be so depressing specially at that age. Sadly we have to be super alert with the meds we are given by our doctors, ever since the beta blocker incident I Google EVERY single medication I'm given, yes, even eye drops & ointments.
 
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