Fibromyalgia

[jessaroo]

What have you found to help ease fibromyalgia?

Has anyone had success with using coconut oil?

Thanks.

[sbgrace]

I always hesitate to jump in on threads like this but I'm going to suggest that you look for underlying issues. My fibromyalgia had underlying stuff. I had a coq10 deficiency/mitochondrial or other metabolic condition. Metabolics is really common in adults with fibromyalgia. Mitochondrial issues can cause it and so can CPTII. Here is my thread about that stuff. I made it for kids but toward the end I talk about CPT II which is usually adult onset and mito has adult onset relatively frequently. http://www.mothering.com/discussions...d.php?t=734501 If either of these are the culprit you can get some treatment.

Vitamin D deficiency is very common and can cause fibromyalgia symptoms and is usually an easy fix.

Sleep apnea or Upper Airway Restriction can cause the same symptoms.
There are so many things. Information on UAR which is going to be a more common cause of fibromyalgia symptoms in pre-menopause females than sleep apnea. http://www.centerforsoundsleep.com/U...e-Syndrome.php


But for me correcting my coq10 deficiency, vitamin D deficiency, and mild sleep apnea fixed my fibromyalgia.

I can give you some ideas of how to investigate this stuff if you're interested/think any may apply. (You can do a urine test to look at metabolics and a blood test to look at vitamin D, sleep apnea or UAR (which is more common in women with fibromyalgia) need a sleep study.

[supakitty]

Originally Posted by sbgrace

But for me correcting my coq10 deficiency, vitamin D deficiency, and mild sleep apnea fixed my fibromyalgia.

If those therapies "corrected" your fibromyalgia, then you didn't have fibromyalgia.

I think we've been down this road together before. I think you have awesome information about FMS-like illnesses but at the same time I feel you negate the validity of FMS as it's own entity.

[supakitty]

Also, Jessaroo, I'm in ABQ too!

[californiajenn]

This connective tissue disorder site could be very helpful for you:

http://www.ctds.info/index.html

I have this disorder and the site is a wealth of info!

[sbgrace]

Originally Posted by supakitty

If those therapies "corrected" your fibromyalgia, then you didn't have fibromyalgia.

I think we've been down this road together before. I think you have awesome information about FMS-like illnesses but at the same time I feel you negate the validity of FMS as it's own entity.

We have which is why I hesitated to post. The thing is that many to most (I'd say 99% plus) of doctors who are aware of and able to diagnose fibromyalgia are not aware of or able to diagnose those common metabolic conditions. Most doctors and neuros anywhere don't know mitochondrial disorder. So I feel it's important to get the information out there as I suspect there are a number of people walking around undiagnosed/misdiagnosed.

Pubmed/medical journal study to illustrate the point that in many cases actual, diagnosed, real fibromylagia may be a manifestation of mitochondrial issues (as it was for me):
http://www.ncbi.nlm.nih.gov/pubmed/20109177

We found reduced levels of coenzyme Q10, decreased mitochondrial membrane potential, increased levels of mitochondrial superoxide in blood mononuclear cells, and increased levels of lipid peroxidation in both blood mononuclear cells and plasma from fibromyalgia patients. Mitochondrial dysfunction was also associated with increased expression of autophagic genes and the elimination of dysfunctional mitochondria with mitophagy.

I'm saying people with actual fibromyalgia very often have an underlying condition such as a mitochondrial disorder. I don't believe anyone being worked up for fibromyalgia is having testing to rule out mitochondrial conditions or other metabolic conditions. The awareness and knowledge just isn't out there yet.

You weren't tested for metabolic conditions were you? I know I wasn't. If a person hasn't been tested then they can well be dx'd with fibromyalgia yet have an underlying issue.

[supakitty]

Originally Posted by sbgrace

You weren't tested for metabolic conditions were you? I know I wasn't. If a person hasn't been tested then they can well be dx'd with fibromyalgia yet have an underlying issue.

In fact, I saw Dr. Ronald Haller http://www.ieemphd.org/NMC%20Homepage/haller.htm . Not to be contrary but this disproves your theory at least in my case. I saw the leading specialist in the country (world?) on metabolic myopathies which is what mitochondrial disorders fall under.

I saw Dr. Haller because my neurologist checked my carnitine levels and found them to be exceptionally low. So my neurologist was definitely looking for underlying causes.

[sbgrace]

Actually, I think the majority (99%) of patients being worked up for fibromyalgia are not being worked up for metabolics. You may be an exception to that but I think you are a rare one.

That said, I imagine he told you that carnitine deficiency always indicates metabolics? Did he figure out the underlying issue there? Carnitine is never low if metabolics are normal. Metabolically healthy people have normal levels. My son's initial finding was low carnitine as well. He did have a skin biopsy to rule out other FOD's like CPT and VLCAD. One doctor suspected VLCAD and the other was suspecting CPT I I believe. Andrew had neither. Did you have a skin biopsy that was negative too I'm imagining? If you did have a skin biopsy it can rule out fatty acid disorders but it can't rule out mitochondrial conditions. What ruled out mitochondrial for you?

In your case, I guess, I'd assume the carnitine is indicating that, indeed, there is something underlying your fibromyalgia. And that's why I'm trying to spread the word. Most people worked up for this wouldn't even know if their carnitine or coq10 was low indicating something metabolic (and signifying some type of treatment to boot) let alone having urine metabolic screens or biopsies done. I requested a coq10 and carnitine on my own because of my son. My neurologist had no clue what the low result meant nor who to refer me to. The second neurologist I saw was supposed to know metabolics but she also was clueless and told me maybe it was diet related or just a fluke. It was my son's geneticist that helped me (he's a mito guy).

Am I missing something? I feel like your experience actually supports what I'm trying to say.

I'm sorry because I can understand why what I'm saying is irritating (I've felt that way with my son who has autism when people talk about this or that diet or supplement). I'm not saying fibromyalgia doesn't exist. I'm not saying there is a magic bullet treatment. I'm just saying it shouldn't be a stop point as I think often there are underlying things with it (not always but often) that can address it to some extent. Not 100% likely (I am much better but maybe would still meet diagnostic criteria) but improvement enough to function at least. Or if the treatment (say metabolic) doesn't help it might at least prevent further damage. I would also say that if one thing is found that may not be the only thing going on (like my case).

Beyond that I think we just see it differently. My son has autism. He also has a metabolic condition that perhaps caused that autism. He still has autism. I had the same condition cause the fibromyalgia. I still consider myself to have had it (perhaps still do) even though there was an underlying cause. Same as if the mitochondrial issue caused cardiomyopathy or pancreatic failure--you've got those conditions no matter the underlying mito. I don't see the distinction. I guess it's just a different perspective.

I hope they gave you some treatment for the metabolic side of things and I know that even treatment doesn't often fix damage (didn't for my son or myself completely though we both had improvement).

[supakitty]

I did have skin biopsy, muscle biopsy, and exercise testing by Dr. Haller (are you familiar with him?)

I hear what you're saying and to a certain extent we are on the same page in that there are many disorders that can mimic the symptoms of fibromyalgia. Perhaps it's the HCP's job to do the million dollar work-up on every patient and not just give up, so to speak, and call it FMS. However, symptoms are usually what dictate the direction that a person's diagnosis process follows. Muscle pain and body aches are not indicative of metabolic myopathies. It is more muscle weakness and the occurrence of muscle break down (with elevated levels of CPK ((i.e. rhabdomyolysis)) and resultant myoglobinuria that often point a HCP in that direction. It is expensive and often fruitless to go looking for metabolic myopathies in all patients because they are rare, not common.

I think for the standard patient with c/o muscles aches, tender points, fatigue, etc. then blood work (CBC, CMP, TSH, ESR, ANA, Rheumatoid factor, Vit. D), an EMG, potentially an MRI of the brain and possibly a sleep study is a pretty thorough work-up (and likely more than most people get).

Awareness is absolutely key and when you've had personal experience you are not only an expert but an excellent advocate and I applaud you for those efforts. I understand that you're trying to get people to think in other directions before they accept a dx of FMS and that's reasonable. I also know the other side of the coin though (just like you do) that when you've come to the place where you are diagnosed and you need to work on tx and how to cope, you cannot keep chasing down blind alleyways with hope for a better option (not to be crass).

I certainly respect that you have a lot of excellent information. I'm glad we had this chance to talk about it!

[sbgrace]

I get that (about the blind alleys/false hope stuff). It might not seem like but I really do get it especially because of my son. I do hear you. I might still pop in on fibromyalgia threads as I don't think most people have anything remotely close to the work up you did but I'll try to be sensitive in my wording and I want you to know I do understand what you're saying.

I'm glad we hashed it all out too!

[mom61508]

What are the differences between cartinine and creatinine?

Maybe I missed the link but what exactly are metabolic disorders and do they apply to thyroid conditions?

[sbgrace]

Originally Posted by mom61508

What are the differences between cartinine and creatinine?

Maybe I missed the link but what exactly are metabolic disorders and do they apply to thyroid conditions?

Creatinine and carnitine are completely different. Carnitine transports fat in the mitochondria. Creatinine is usually measured to look at kidney function. High blood levels can indicate muscle breakdown. In my experience/understanding normally CPK is not elevated in mitochondrial patients. It is elevated in at least CPT II sometimes (not always) in crisis I think.

Metabolic conditions (the most known might be PKU that babies are screened for around birth) are that the body genetically doesn't produce what it needs to breakdown food, use food, or do another process. For example in mitochondrial disorder the body has faulty mitochondria in various body parts. Every cell in your body (except red blood cells) contain mitochondria that power the cells to help them live and grow and function. If there is damage (enough damage) in the mitochondrial "power plants" in cells in a particular area that body part will malfunction or be damaged. This is because the faulty mitochondria can't use fat for energy, process oxygen, produce ATP (all stuff healthy mitochondria do) for those cells or can't completely do those things. Basically, mitochondrial disorders mean the body can't produce adequate energy and perform it's functions.

Mitochondrial disorder is, actually, a common metabolic condition compared to other metabolic conditions frequency wise. CPT II is (relatively-metabolic wise) common as well.

I don't know of any metabolic conditions that pertain to thyroid. There may be some. I don't know of them. I linked above how they pertain to fibromyalgia in some patients.

[mom61508]

Did you mean Low creatinine pertains to muscle loss because I thought when creatinine is low you can't use/breakdown protein properly or your diet is jut lacking in protein.

DD has low creatinine levels .30 and I'm trying to pinpoint why its low so that's why I was asking I thought maybe I had it wrong.

[supakitty]

Originally Posted by mom61508

Did you mean Low creatinine pertains to muscle loss because I thought when creatinine is low you can't use/breakdown protein properly or your diet is jut lacking in protein.

DD has low creatinine levels .30 and I'm trying to pinpoint why its low so that's why I was asking I thought maybe I had it wrong.

Creatinine levels pertain to the kidney's ability to filter, regulate and eliminate water, electrolytes and waste products. Elevated creatinine levels indicate decreased kidney function.

Muscle breakdown is measured by the level of the enzyme called creatine kinase, which is different.

[sbgrace]

Originally Posted by supakitty

Creatinine levels pertain to the kidney's ability to filter, regulate and eliminate water, electrolytes and waste products. Elevated creatinine levels indicate decreased kidney function.

Muscle breakdown is measured by the level of the enzyme called creatine kinase, which is different.

Thanks for that correction.

mom61508, I don't think creatinine low is an issue at all. My son ran low and I know no one was concerned.

[mom61508]

Originally Posted by supakitty

Creatinine levels pertain to the kidney's ability to filter, regulate and eliminate water, electrolytes and waste products. Elevated creatinine levels indicate decreased kidney function.

Muscle breakdown is measured by the level of the enzyme called creatine kinase, which is different.

Well now I'm a little confused since that is what our ND said it was low not elevated. Our Nd is concerned that she isn't getting enough protien.

Originally Posted by sbgrace

Thanks for that correction.

mom61508, I don't think creatinine low is an issue at all. My son ran low and I know no one was concerned.

Good to know...thank you.

[sbgrace]

Originally Posted by mom61508

Well now I'm a little confused since that is what our ND said it was low not elevated. Our Nd is concerned that she isn't getting enough protien.


Good to know...thank you.

Is she getting enough protein? It's easy to count grams intake and figure out if she's getting what she needs for her weight/height (or we always did age for my son given he was underweight/height)
If he's concerned about intake you can figure that out. If he's concerned about digestion you can do tests for malabsorption as well.

OP: I'm sorry I've sort of taken your thread in all directions but hopefully this gets a bump and you get more views and ideas.

[blessedwithboys]

Originally Posted by jessaroo

What have you found to help ease fibromyalgia?

Has anyone had success with using coconut oil?

Thanks.

hey, OP! looks like things got a bit sidetracked here LOL

i'll answer both of your questions

i have not tried large doses of CO to help my symptons, though i do use it in my cooking

as for what helps...a very very locarb diet. even soaking grains a la TF isnt safe for me, tho i do it for my kids, and yes, i do cheat.

also, 50mg of amitriptyline at 5pm each evening. makes me sleep, takes away the pain, but doesnt come close to touching the brainfog.

i know, not super crunchy, but for me, its the best bet. i am the OCD type to ge tso wrapped up in trying to figure the whole thing out that i can spend hrs online ignoring my kids.

and as for what i believe about FM...i do not think it is an end of the road dx. i think it is a collection of symptoms caused by any # of imbalances in the body. but allopathic dr's are not healers, they are rx-writers, so there you have it.

[Cheryl33]

I was diagnosed in 98, and have been almost totally symptom free for about 5 years now. I still have some things come up here and there, but nothing chronic and not one flare up.

When I was newly diagnosed they were not really giving pain meds for it, or at least I was never offered any. I was on amitriptelline (sp) for a short time but it did nothing for me so I went off. Other than that I have been med free for it.

What works for me is almost no caffeine, I try to avoid a lot of sugar, exercise and Vitamins- ditto to the above mentioned Vitamin D. LOTS of it- I take 3,000 units a day myself, some people take more. When I feel yucky moist heat works well. Heat pad, bath, hot tub, steam, whatever you can get. Eating healthy, whole foods, organic as much as possible, that kind of thing. I really think the caffeine is a big part of it.

I didn't have an exercise routine prior to 2001. I was in a HUGE long flare up and I started with just simple walking. I started to really enjoy it, then I started swimming as well. It really kicked me out of that funk. Yoga is amazing too! They have lots of gentle yoga options to start.

Another things that really works for me is when I need it is massage therapy, acupuncture and recently seeing a chiropractor.

I am really out of touch with the newest ways they treat so I have nothing to say about all of that, but I have found the best way to manage is to look to myself to make changes in my life and not to count on western medicine to make it better.

hope some of this helps.

eta: this thread talks about iodine and fibro- worth a look
http://www.mothering.com/discussions....php?t=1091794

[mom61508]

Originally Posted by sbgrace

Is she getting enough protein? It's easy to count grams intake and figure out if she's getting what she needs for her weight/height (or we always did age for my son given he was underweight/height)
If he's concerned about intake you can figure that out. If he's concerned about digestion you can do tests for malabsorption as well.

OP: I'm sorry I've sort of taken your thread in all directions but hopefully this gets a bump and you get more views and ideas.

Sbgrace:Should I just PM you? Do you have any info regarding protein intake for toddlers? What test are good to check malabsorption?

Op: i'm sorry I got people sidetracked