Fibro looks like it has got permanently worse....?

[nokmax76]

Okay here's the thing. I've had M.E/CFS for around thirty years. Most worrying symptoms; fatigue, brain-fog and pain resulting from even minor physical exertion. I call this pain Fibro as I have tender points and stiffness but it's more accurate to call it PEM. I ache all the time but pain is caused only by physical activity or serious mental stress. I have never had a remission and each symptom has got gradually worse.

However, I'm better off than many and I get one major source of relief: summer. Unlike many, summer is great for me and every symptom improves. Seems like I'm naturally hooked on Vitamin D I guess. So as bad as things get during winter, I at least know I have three months of relief to look forward to.

Unfortunately, with the muscle pain, that hasn't happened this year. It's as if my "Fibro" has doubled in severity to the point where one of my legs is almost seizing up and even a simple activity like typing a paragraph produces pain in my fingers that wasn't there before. And, unlike almost every other instance in my life, I can't pinpoint this increase to a period of extra physical or mental stress that has exhausted my body. Or even the taking of a new medicine. It just came on suddenly during spring and has never really left. Anything like this happen to anyone else? Is it a sign of aging that I just have to put up with (I'm almost fifty) Is it yet another permanent adjustment I have to make? I really hope not.....

 

[out2lunch]

Sounds to me like you might have a hypercoagulation problem.

During winter months, our bodies naturally produce more fibrinogen which will compound this problem. The heat of summer helps to counteract this by opening up your capillary beds and improving blood flow throughout. And vitamin D has blood thinning properties, which also suggests hypercoagulation.

The one thing that really helps me with my fibro pain is far infrared heat. I have both the Therasage portable FIR sauna and their FIR heating pads to lie on at the end of the day on a zero gravity foam wedge system.

When I don't use either the heating pads or the sauna, my fibro pain is almost intolerable, especially in the "coat hanger" region of my neck and upper back. When I allow these muscles to become too tight, my thoracic outlets and TMD joints become problematic, which starts a kind of pain cascade all over my body.

Blood flow problems are very common in fibromyalgia. In fact, I personally believe this IS the problem. Something is buried under the capillary bed, inflaming the vessels and hindering blood flow in order to protect itself from our immune systems. And returning blood flow to the tissue improves oxygenation which in turn reduces inflammation which in turn improves neurological function which in turn reduces the pain we all experience.

If you can, ask your doctor or find a practitioner who understands hypercoagulation. At the very least, try to incorporate far infrared heat into your daily routine. It has worked miracles for me.

 

[Gondwanaland]

And vitamin D has blood thinning properties,

I didn't know that, even with its calcium retaining properties?

Something is buried under the capillary bed, inflaming the vessels and hindering blood flow in order to protect itself from our immune systems.

In my current understading of the issue, I think it is dietary oxalates. After 2 years following a whole grain diet I had thrombosis. Since Idon't have genetic thombophilia I think I had blood vessel degeneration from too much oxalates in my diet, a silly injury, a vessel rupture and blood clots to repair the vessel.

We have a thread on oxalates if you want to tweak your diet to see if you can inmprove from the pain, @nokmax76
It is linked in my signture under "Prebx Probx Ox". Oxalates probably gets deposited in vessels, organs, joints, soft tissues in genreal in susceptible people.

 

[out2lunch]

I didn't know that, even with its calcium retaining properties?

Surgeons go apesh*t when they find out you're taking vitamin D or fish oil or aspirin (and really freak out when you're taking all three) because of blood thinning. You have to stop them prior to surgery or any medical procedure that involves potential blood loss.

In my current understading of the issue, I think it is dietary oxalates.

But many people with fibro don't have oxalate issues, according to my doc. The only way to know for sure is to go on a low oxalate diet for a week and test your urine for dumping, preferably with the OAT test from Great Plains Lab.

And even if you have an oxalate issue, getting out the oxalates through diet and supplementation over several years may not address the capillary or nerve inflammation if you also have a mold problem and lots of mycotoxins in your tissues.

For many of us, we have several compounding problems that are difficult to address and resolve completely. I have mold and mycotoxin issues, along with EBV chronic infection, Ehlers-Danlos and resulting osteoarthritis from lax joints, and methylation problems which resulted in too many heavy metals retained over the decades.

Going on a low oxalate diet may be helpful for some, even those with an oxalate problem. But it's not going to bring major relief if other issues like the ones above aren't also addressed.

 

[Gondwanaland]

But many people with fibro don't have oxalate issues, according to my doc.

Oxalates have been poorly researched other than in kidney stones.

For instance:
http://www.ncbi.nlm.nih.gov/pubmed/8506623
Nature and significance of calcium oxalate crystals in normal human thyroid gland. A clinicopathological and immunohistochemical study.

http://www.ncbi.nlm.nih.gov/pubmed/23666469
Update on oxalate crystal disease. (arthritis)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2366163/
Atherosclerotic oxalosis in coronary arteries

 

[out2lunch]

Oxalates have been poorly researched other than in kidney stones.

I'm specifically referring to the patients seen in his clinic, where several doctors are practicing. And the majority of that patient population has either Lyme, ME/CFS, fibro, mold toxicity, other autoimmune disorders, or various combinations of them all.

Doing OAT testing is basic. Most of us do it because insurance pays for it. And the testing protocol is specific: low oxalate diet for a week and no supplements for 24 to 48 hours if it's the first test, in order to get baseline levels.

Even though the vast majority of this patient population would feel right at home on these boards as fellow kindred spirits, according to my doc, most of them do not have an oxalate problem. He mostly sees the oxalate problem in those of us who are on the autism spectrum or who have family members who are.

Yes, there are more oxalate problems in the fibro community, probably because of the increased preponderance of autism spectrum representation. But not all fibro sufferers have the spectrum running through their families. And those that don't probably don't have an oxalate problem. The only way to know for sure is to test for them.

Personally, I have an oxalate problem that I know is contributing to my fibro pain. When I go on a low oxalate diet, during the honeymoon period of the first week, I have less joint pain. But... I have yet to find the happy medium where I am slowly dumping oxalates without ripping up my gut and kidneys.

There's no such thing as a moderate oxalate diet where I can gradually eliminate them from my tissues. My body either hangs onto them fiercely and won't let go, or tends to dump them too quickly through my gut and kidneys, causing gallbladder attacks and kidney stone formation. It's like I have a tipping point regarding oxalate consumption, where just a bit too much intake equals zero dumping, and just a bit too little intake equals huge dumping. And I'm not the only patient my doctor sees who's complained about this.

So... oxalates are bad for some fibro patients. I'll give you that. But trying to eliminate them can be even more destructive than simply letting them be.

 

[ahmo]

where one of my legs is almost seizing up and even a simple activity like typing a paragraph produces pain in my fingers that wasn't there before.

Have you tried magnesium or potassium?

 

[nokmax76]

Thanks for the replies guys. Hyper-coag is a new one on me. I'll have to reseach this, infra-red and the other issues raised. I guess I took the seasonal relief I normally get for granted. We are in the middle of heat wave where I am and the physical relief has been minor compared to what I normally get. Thankfully there has still been the slight but consistent mental boost.

@ ahmo I think I know what you're getting at. I have tried magnesium before, not potassium though. I was tested and my levels of magnesium were normal. I know that most magnesium is actually in bone so blood tests are not accurate, but bear in mind this test was in the days when my Vit D was single-figure low. But I tried it anyway. Predictably, because I am super-sensitive to many supplements/medications, it made me feel worse. I'm wary of trying it again TBH.

 

[GONZ0hunter]

Thanks for the replies guys.
.

What pain meds do you take?

 

[nokmax76]

Hi Gonzohunter. Sorry for the late reply. I could have sworn I replied to your post..? In fact I know I did... my fog can't be that bad... was it deleted because I posted a link to another thread or something...? Anyway, I don't take any pain meds because I tend to react badly to all the ones I've tried so far. The last one I tried was Lyrica. That gave me the shakes.

One other thing. A while back I started to suffer with swellings and bruises directly related to activities. For example, if I was using a hand saw for about five minutes, my wrist would swell. If I was sandpapering for a while I would get swellings on my forearms, etc. This is of course in addition to the normal pain. The swellings would go after a day or two so long as I didn't continue the activity that caused them in the first place. Then the whole issue stopped and no more swellings for a couple of years. But they have come back in the last month or so (as it is summer, I have been trying to do more) with the same cause and remedy as before. Any ideas?

 

[GONZ0hunter]

Weird. I get swelling bad as well. The no pain meds route I have done Kinseo tape, myofacial injections, novicaine cream, and those all helped.

To be honest opioid pain meds are all that really helped me greatly .

Do you have a pain dr? Maybe Celebrex? NSAIDs are linked to heart attacks so I stopped taking them but I don't know.

Sorry for the late reply

 

[nokmax76]

Thanks GH and no worries for replying late. It happens. I'm almost glad that you get activity swellings as well. It's not a symptom that I've heard of anywhere else and I was worried it was something outside of M.E.

It funny that you talk about opioids. They are the only thing that's helped me as well. The link that I think got my original post deleted was to a thread about the relief provided by opioids. It seems for many of us, it's the only thing that really works. So, in addition to everything else, ME is driving us to become addicts. That's just ... swell

 

[jason30]

Hi,

I have Fibro for 3 years now and I want to give my experience with the product Symbion For Life; a probiotic with the following ingredients:
Bacillus coagulans (200 million CFU*)
Bacillus subtilis (100 million CFU
Enterococcus faecium (100 million CFU).
Fructo-oligosaccharides (FOS).

This product is no solution but my Fibro pain is away. I'll guess that a lot of inflammations is coming from the gut. I'ts a big relief for me. Now I can focus on other things!

 

[Vanessa_M]

I once spoke with a psychiatrist who said he had a lot of patients experience a great reduction in their fibro pain symptoms and sleep after getting IV magnesium sulphate (4 round, he recommended). He said none of these individuals appeared to have any kind of deficiency via standard blood work, and yet there still was a significant improvement. He had advised that I try it, but I would have had to pay out of pocket for the treatments. Luckily I did recovery by other means, so never did give it a shot. But just curious if anyone else had heard of this?