Fibromyalgia or ME/CFS?

[Legendrew]

Hi, this is just a general discussion about my general health and a query as to whether I now better fit a diagnosis of fibromyalgia over ME/CFS.

Initially my symptoms were dominated by nausea, vomiting, swollen lymph nodes and general weakness - my guess is that this was an "acute phase" which eventually passed after 2-3 months. Since then the main symptoms I now suffer are frequent headaches/migraines, muscle aches.pains following exertion, reactive hypoglycemia, IBS type symptoms, underarm/rib pain (I'm guessing this is costochondritis), bouts of TMJ and occasional brain fog/blurred vision. Of these the main problems would be the muscle pain, headaches and hypoglycemia. I've been testing myself a little of late and have noticed that i'm quite capable of walking around and even went around a car boot sale last weekend and didn't suffer for it other than muscle aches/pains that evening and the next morning. In-fact, contrary to feeling worse, being a little more active has helped me to feel a little better of late, sadly I've get a cold at the moment so I'm quite achy but I think I'll continue doing more where I can; this is definitely something I don't think many here would attest to.

What makes me wonder is I've never suffered with the classic "crashes" which are seemingly so common in ME/CFS, after exercise I simply feel achy, sore and a little worn out the following day but I can still function relatively well. Researching a little I think the main problems I have point more towards fibromyalgia than they do ME/CFS. I realise they often come together but I seem to be lacking the key criteria for ME/CFS which does make me wonder, perhaps my acute onset (following vaccinations and antibiotics) in fact triggered gastritis or pancreatitis - that would explain the symptoms at the time and the resulting stress combined with the stress of moving to university triggered the fibro... who know.

Let me know what you think and whether you've ever considered your diagnosis could better befit something else.

 

[Radio]

Great Book:

Fibromyalgia in a Nutshell: A Safe and Effective Functional Medicine Strategy.
A complex condition deciphered based on published (and often overlooked) research—the hope for cure for millions of people who have suffered far too long! Summarizing research presented in Europe in March 2012, "Fibromyalgia in a Nutshell" is an updated excerpt from two of Dr Vasquez's recent books for doctors: "Migraine Headaches, Hypothyroidism, and Fibromyalgia" and "Integrative Orthopedics—Third Edition." This edition of the information has been completely reviewed and revised for easier reading by the general public; doctors and patients alike will find this information clinically accurate as well as therapeutically applicable for daily use. Look for more info here.http://www.amazon.com/Fibromyalgia-Nutshell-Effective-Functional-Medicine/dp/1475121253

If you have problems with the link, you can find this book at Amazon.com...Pay it forward
Fibromyalgia in a Nutshell: A Safe and Effective Functional Medicine Strategy

 

[barbc56]

I have FM and the "pain" is not localized but an all over ache down to the bone like I have a temptrture, and sucks all the energy from me. I do get PEM most of the time. At one time CFS was on my medical record with the FM but somehow it got dropped.

I will come back and post great website which I can't find atm.

Barb

ETA Here is the first installment of a four part series of Functional Medicine and whether it stands up to Science Based Medicine:

http://www.sciencebasedmedicine.org/fuctional-medicine-fm-what-is-it/



FM website:
http://fmaware.org/site/PageServerccdf.html?pagename=fibromyalgia_science

 

[Insomniac]

If mild exercise helps you, or the muscle pain, then you have fibromyalgia.

Many people with FMS say they have PEM, like Barb. Many tell me they tired. But if mild exercise helps them a bit, or doesn't worsen things, then they don't have CFS.

 

[Legendrew]

If mild exercise helps you, or the muscle pain, then you have fibromyalgia.

Many people with FMS say they have PEM, like Barb. Many tell me they tired. But if mild exercise helps them a bit, or doesn't worsen things, then they don't have CFS.

This is what I was thinking, the exercise causes my muscle pain but overall I feel a little better for it whereas with me/cfs I think most suffer very badly from it. I still think that me/cfs and fibromyalgia are closely linked, perhaps different presentations of the same process. I do wonder whether exercise could help me/cfs in some way but it seems the pem is just too intense for any effect to be noticable.

 

[SOC]

If mild exercise helps you, or the muscle pain, then you have fibromyalgia.

Many people with FMS say they have PEM, like Barb. Many tell me they tired. But if mild exercise helps them a bit, or doesn't worsen things, then they don't have CFS.

And some people who think they have PEM are confusing PEM with exercise intolerance, which is known to exist in other illnesses. Then there's the people who seem to have both FM and ME/CFS.

I agree that if mild exercise helps, then it's far more likely you have FM than ME/CFS.

 

[barbc56]

It would not surprise me if it turns out that PEM is the difference between FM and ME/CFS.

However isn't the level of PEM dependent on the severity of a person's ME/CFS?

But then if you have both, how do you differentiate between the two?

It's so complicated.

Barb

 

[Insomniac]

It would not surprise me if it turns out that PEM is the difference between FM and ME/CFS.

However isn't the level of PEM dependent on the severity of a person's ME/CFS?Barb

Yes PEM is the main difference between FM and ME/CFS.

But then if you have both, how do you differentiate between the two?

Barb

FM is diagnosed by 11 out of 18 tender painful points.
Fibromyalgia comes secondary to Hepatitis, Lupus, Interstitial Cycitis not just CFS.

Fibromyalgia is pain.
They list a lot of other symptoms as part of fibromyalgia, but you MUST have pain on 11 points to get diagnosed with fibromyalgia, the rest of the symptoms are just extra, and would not get you diagnosed if you had them without the tender points.

 

[barbc56]

@redrachel76

Althout the tenderpoint test is now being questioned, I scored 18 out of 18. I can't off the top of my head remember why this is being disputed or if it is even a valid argument. I need to look up this information.

Like I said, I usually hurt wherever I am touched. Usually. I can't get a massage as it triggers the pain throughout my whole body which may turn into a flare.

Take care.

Barb

 

[SOC]

@redrachel76

Althout the tenderpoint test is now being questioned, I scored 18 out of 18. I can't off the top of my head remember why this is being disputed or if it is even a valid argument. I need to look up this information.

Like I said, I usually hurt wherever I am touched. Usually. I can't get a massage as it triggers the pain throughout my whole body.

Take care

Barb

FWIW, I have a good friend who had that kind of pain. Hers turned out to be atypical migraine. It's not the type a GP would recognize, but apparently a good neurologist can. I don't remember for certain what med is helping her, but I think maybe it is neurontin...?

 

[barbc56]

FWIW, I have a good friend who had that kind of pain. Hers turned out to be atypical migraine. It's not the type a GP would recognize, but apparently a good neurologist can. I don't remember for certain what med is helping her, but I think maybe it is neurontin...?

Thanks, @SOC

Actually, I see a neurologist for my me/cfs, FM as well as my sleep disorders. I disliked, the rheumatologist I had and a friend recommended him. I have been very impressed. I also have neurological problems.

FM is typically a deep all over body flu like aching down to the bone, makes you feel like you are running a 105 degree fever which literally sucks any energy out of your body. In fact there have been times I didn't realize I really was running a temp.

Interestingly enough, I have two friends who have the atypical migrains. One gets the pain, not sure it's widespread or nor but I think it might be. The other has one eye that becomes dialated.

At one time I was on Neurontin but it didn't help. After some trial and error, tramadal along with clonazapam at night which also helps my RLS, have really helped relatively speaking. For some reason, Narcotics don't help my pain.

My dad takes Neurontin for peripheral neurapathy (sp?) and he swears by it.

I really appreciate the information, as you never know who it might help and that's why this forum is so great!

Take care.

Barb

 

[taniaaust1]

It would not surprise me if it turns out that PEM is the difference between FM and ME/CFS.

However isn't the level of PEM dependent on the severity of a person's ME/CFS?

But then if you have both, how do you differentiate between the two?

It's so complicated.

Barb

I didnt think that fever is usually found in those who have only FM.. thou of cause it commonly is in those who have both ME/CFS and FM. (Many FM patients have had CFS missed and that may be why you could hear of some having fevers with FM).

I do think the symptom complexes between ME/CFS and FM are different thou of cause ME/CFS/FM all have some symptoms which are in both eg extra fatigue, headaches, IBS, pains, sleep issues, brain fog.. but others are more distinctly ME. eg fever, sore throat, cough and arent usually found in FM and of cause post excertional malaise which hits the next day. (VIruses thou trigger off many things and maybe they can trigger off FM too??).

I guess one can describe an FM person as having a smaller range of different issues compared to what is found in ME/CFS http://wwcoco.com/cfids/bernesx.html "In my survey of the Phoenix area group, figures were compiled to indicate the average total number of symptoms experienced all of the time (11 symptoms) and the average total number of symptoms experienced by each patient some of the time (18.6 symptoms)." I wonder what the average number of symptoms a FM patient has but it wouldnt be as high as ME (my nanna has FM..she has only 6 symptoms with it.. I have 90 due to ME).

 

[Insomniac]

In Israel there are tons of doctors that diagnose fibromyalgia and only 2 (?) docs who diagnose CFS- in the whole country.
There is NO doctor who knows the difference between the FMS and CFS.

As a result, when I get on an Israeli forums and meet an Israeli sufferer of "FMS" or "CFS", I am forced to ask them the following questions to find out if they really have their diagnosis.:

If they get PEM,
temperature,
painful lymph nodes,

If they have the 1st symptom or any of the 3 above, then they have CFS
A primary FMS patient *never* has those symptoms.

 

[Insomniac]

I had an experience connected to this.
The forums in Israel are all filled with FMS patients because, like I said, there are only 2 doctors in the whole country that diagnose CFS (no M.E ).
So many FMS can get diagnosed, but it is hard for a CFS sufferer to get diagnosed.

So I went on a Forum for "FMS and CFS." It was the biggest one with 4000 patients. Most of the posts was on pain. There was a survey with the following question:
"What treatments helped you:
Cymbalta,
clonex and muscle relaxants
antidepressants,
walking,
physiotherapy,
CBT
hydrotherapy,
massage
medical marijuana"
There were a some other sports listed.

80% of posts were about pain, legalising medical marijuana for FMS, help with disability claims. There was a little on food allergies and tiredness/weakness/exhaustion.
No one was bedridden.
In short, a forum filled with primary FMS patients looks different to an M.E forum.

I wrote about my symptoms and a number patients with "CFS" and fibromyalgia told me that the graded exercise and CBT center in Tel Aviv's Eichilov hospital helped them. I posted reseach showing 50% of ME patients worsened on graded exercise.

They answered that there is worsening at first before improvement. They quoted Wessley and other bad research. They also said those 50% who reported worsening probably didn't keep up with their exercises like they did.
When I continued to argue they got abusive.
Only 3 out of 4000 patients answered that graded exercise didn't help them.
It was mentally draining. I got very upset.
Then when I tried to rejoin the forum later the leader didn't let me me in b/c of my argument against exercise. It is the only properly large FMS+CFS forum in Israel so I have lost my chance to find someone sick like myself.

In short not knowing the difference between the two does us with ME/CFS damage, ...and there a huge difference.

 

[Radio]

What is the root cause of Fibromyalgia ?

Mitochondrial damage is a normal part of aging, but is accelerated in many metabolic disorders. Chronic deficiencies and gut imbalances can destroys the mitochondrial membranes and lead to the modern diseases we see today.

Intestinal bacterial overgrowth (SIBO) can be the underlying cause for many of the symptoms associated with fibromyalgia and chronic fatigue syndrome.These bacteria can be aerobic as well as anaerobic. SIBO can lead to a overproduction and absorption of toxins such as D-lactic acide, Tyramine, Tartaric acid, Hydrogen sulfide as well as Endotoxins. This can impair the brain causing fatigue and many other nervous system mitochondrial dysfunctions. Bacterial cellular debris can stimulate the production of endogenous interleukin-1 and tumor necrosis factor. LPS can cause inflammation and mitochondrial impairment. Bacteria and yeast overgrowth can also produce hydrogen sulfide (H2S) that can bind to the mitochondrial enzyme cytochrome c oxidase, part of the electron transport chain. This can also impair oxidative phosphorylation and ATP production. Hydrogen sulfide is a neurotoxin and metabolic poison and can cause fatigue, muscle pain and dyscognition. These bacteria imbalances can produce tryptophanase which can digests tryptophan that is the main building block for serotonin and ultimately melatonin. Tryptophan depletion leads to melatonin deficiency which in turn leads to sleep disturbances, mitochondrial impairment and oxidative stress as well as muscle fatigue. Finally these bacterial overgrowths can also produces D-lactic acid which is a neurotoxin as well as a metabolic poison in abnormal amounts. The main focus is to prevent Apoptosis (cell death) and it's imperative that we start mitochondria supportive therapy and identify and treat gut imbalances as well as intracellular deficiencies.

 

[Insomniac]

@Radio
I noticed that a large proportion of FMS patients who are extremely active. They just have the pain. Mild exercise makes them better. The FMS patients on this board, like the ones on this thread, tend to be more heavily effected.

 

[Radio]

@Radio
I noticed that a large proportion of FMS patients who are extremely active. They just have the pain. Mild exercise makes them better. The FMS patients on this board, like the ones on this thread, tend to be more heavily effected.

Yes, that was my life 10 years ago. Fibromyalgia is a progressive acquired mitochondrial disease.

 

[Mya Symons]

Yes, that was my life 10 years ago. Fibromyalgia is a progressive acquired mitochondrial disease.

I am going to agree with this. I have had fibromyalgia for over 15 years. At least for me, the symptoms get worse as time goes by.

 

[Tired of being sick]

Easiest way to find out if you have fibromyalgia is pressing with your thumb on ALL the extremely tender pressure points

I have em all and then some and I'm a man!

Fibromyalgia is just another symptom of CFS/ME in my eyes........

 

[xchocoholic]

@Legendrew

There's a video series on bodies that you might enjoy. I can't remember the title but it consisted of a scientist pulling back the layers of skin on a cadaver and explaining what was there.
Surprisingly, it wasn't as gross as it sounds. Lol. My local library had it so your might too.

I found that my pain can typically be attributed to eating certain foods like tomatoes, certain spices, caffeine and high oxalate foods. Like an idiot, I keep trying these tho.

I found out recently that taking slow to moderate paced and quiet 20 minute walks make me feel less stiff and more energized. Due to my OI, any exercise that causes a pots reaction makes me feel worse. Talking takes up too many neurotransmitters.

I start out slow because I'm easily winded but I can pick up the pace once that clears. Stopping for any reason just means my first few steps will make me winded again.


Pots sucks. X