Thursday, March 19, 2015
How do you deal with it?
Do you deal with it?
Or do you make it worse.
I got a comment on a previous post from someone who does not believe that Fibromyalgia is real. I went to the site and I was appalled. I wasn't appalled by the fact that this person doesn't believe in Fibromyalgia. I wasn't appalled by some of the things that were used for this persons evidence.
I was appalled by the vile and venom that was spewed by those with Fibromyalgia.
To me, there is no excuse for that kind of behavior.
Lets face it. There is a lot of speculation about the cause. No one has been able to pin it down. Yet. There is a great deal of research going on and that is a good thing. Hopefully, in the near future there will be management tools beyond Lyrica and antidepressants. I know there are people out there that take them but I can't. It makes me squirrely and I think they can be very dangerous if you quit them cold turkey. I've written on this before. I'm not a doctor and if you use this please don't take my word for this. It's strictly a personal observation.
What I have a real problem with is people sitting behind a keyboard spewing garbage. It's ok if there are those out there who do not believe in this. That opens discussion and they have a right to their opinion. We may not like it but that's what makes this country great. We have free speech. What we have is difficult enough to deal with. Why compound it?
I was asked an interesting question. "What does Fibro add for me if I have other issues?"
I've been open about the fact that I have thyroid issues and the symptoms are closely related to Fibromyalgia. I've also been open about the fact that all this came about after a nasty car accident in 2008.
While I believe that this is a central nervous system dysfunction there isn't concrete evidence of trauma being a cause. There are doctors out there that believe it's related to thyroid problems, AV shunts in the hands, inflammatory cytokines and all sorts of theories. The fact is that we just don't know the cause.
What does it add for me?
I wouldn't say it adds anything. What it does is let me know that I have a constant level of pain that I have to manage daily that I didn't have to manage before. There are days when I want to curl up in a fetal position and throw a huge pity party for myself. There are days that I whine like crazy until I drive myself crazy. Then there are days (most days) that life goes on. Mostly, my symptoms include pain. I don't have a lot of fatigue but I know when my body says stop. I don't have depression but living in constant pain can get depressing. I do remember the time when I didn't have to constantly manage pain.
I know that some of the pain is directly from lower lumbar and cervical injuries. The rest of it that fluctuates is from the Fibromyalgia. There are many spots....not just tender points...that are painful to the touch.
I don't exaggerate pain because I don't like it.
It limits me and that really pisses me off.
What I do like is finding out the "why."
And, I think that is open to discussion.
Open, thoughtful and rational discussion.
It's important for all of us to remember that we should treat others,
how we want to be treated.
Be kind to each other.
Friday, March 13, 2015
I've always found this suspect.
Now, I know why.
I do try to always be respectful of someones belief system. I may not agree with the doctrine but again, unless I'm asked my opinion, I'll stay out of the argument. Everyone has the right to their theology. Unless.....
Sometimes it just isn't right.
I've always disliked when people talk about God as the genie in the bottle. Just because we want something doesn't mean we are necessarily going to get it. Sometimes the answer is yes; sometimes the answer is no and sometimes the answer is, "no answer right now." I personally don't think that God has a magic wand that waves when we want something. Present your claim check and all will be better once again.
Especially when that claim check has to do with health care.
I heard that the mind can control the body. Don't I just wish that were the case! I've stated in previous posts about my stitches on the table event. I do think we can exercise some sort of control over an acute pain condition. Acute pain is usually short-lived and I think breathing and mind control can help ease the pain in some cases. Like I said, I've done it.
When the pain is chronic it's a moment by moment issue. Also, I have one little issue with that whole theology. It doesn't work for all diseases. How on earth could you possibly sit in a room with people and say the mind can control the body and throw God into the mix. If that holds true then I should be able to use my mind to get rid of the Fibromyalgia. Or, God Forbid, someone has cancer then they should be able to get rid of the pain with that if they use their mind to control their body,
So what happens when it doesn't work? I guess that can be a real faith buster. You see, I read the Bible and sometimes God does his best work with a body that is infirmed. In fact, most of the great men and women of the Bible had some sort of physical problem.
I just think it's dangerous to use the name it and claim it phrase.
When it doesn't work a persons faith can be damaged and that isn't good. When it doesn't work it can also make the other people around think that God doesn't work like he should. So what happens now? I just find it incredible that someone can spout that they can control their pain and get rid of the medication by faith and their mindset. By simple logic it also makes it sound like if you don't go along with it you're either faithless or mentally slow.
You can also turn someone away from God when the prayer isn't answered.
I shouldn't let this get to me......
but it does.
I guess I don't have enough faith......
To believe that one.
Highway to the danger zone.......
Thursday, March 5, 2015
Should we hide under a rock?
The problem is we don't know what to believe.
The problem is we don't know what to believe.
I've been reading about the information from the World Health Organization about our cell phones and the radiation that's emitted from them can cause cancer. Didn't I just read that the WHO said cell phones were not carcinogenic?
It doesn't help that everywhere we look there is a different opinion, backpedaling or out and out lies just to buy a certain product. I mean, lets take the information that's out there about food. If we exclude eggs, peas, dairy, whey, bean sprouts, all beans, broccoli, cauliflower, bok choy, lentils, cabbage, kale, asparagus, onions, leeks, rutabagas, shallots, garlic, papaya, any dried fruit, coffee, bananas, avocados, honeydew melons, meat, poultry and fish we can cure Fibromyalgia. Now, lets go to the nightshades. Potatoes, tomatoes and peppers.
And let's not even talk about sugar.
I have listed foods from different sites that talk about Fibromyalgia and diet. It's amazing how many foods are on the "forbidden list." Is there anything left to eat? Great, I can't eat and now I can't use my cell phone.
I'm making light of all of this but there is a grain of truth to it all. We've become an over-processed, over-medicated, fast food, plastic and techno society. I find it disturbing that antibiotics and hormones are added to the grain that is used to feed our poultry and cattle. I find it VERY disturbing that genetically modified food is part of our food chain. How long have we had plastic bottles in our babies mouths only to find out that the BPA (bisphenol A) is dangerous? I would much rather eat organic or natural products that the over-processed and chemical filled foods that are out there. That sounds funny coming from someone who is a diet coke addict but it's true. I just think that there are choices out there and we should be aware of what we are putting in or on our bodies. I think labels should be truthful and I think knowledge is power.
I don't know what effect all of this has upon our lives. Progress has to take place. I wouldn't want to go back to a bygone era. I like my computers and iPhone too much. Unfortunately, I also believe all of this progress isn't good. However.............................
Am I willing to give up my cell phone?
There's one thing true about life.
None of us get out of it alive.
Tuesday, February 24, 2015
I read about it.
It sounded kind of interesting.
So, I contacted the owner.
It still surprises me that people respond the way they do. I sent an email letting the owners of the company that I would be reviewing their product. I also ask them for additional information that would be helpful for the review. Honestly, I don't expect a response. They probably get tons of requests and I just don't expect much.
We were on the phone 45 minutes.
It was a great conversation.
What absolutely floored me is that they cannot call it an "Arthritis and Fibromyalgia" Essential Lotion anymore. Get this. You can lodge a complaint with the FDA and it can be a totally fabricated one. Like the one lodged against this company allegedly from a competitor. The FDA swoops in "to protect the public." Now, a small company has to change all of the packaging because of a bogus complaint. That's an enormous cost. What kills me is that the FDA allows medications and other formulations that have TONS of side effects on the market.
Protecting the public??
From lotion and soap?????
Give me a break.
I was on Facebook and someone in one of the forums happened to mention Two Old Goats lotion. The comments about the products were positive so I decided I'd try them out. I went to the website and then checked out Amazon. I'm a Prime member so I get free shipping. Anyway, I ordered the product off Amazon. This was before I had spoken with one of the owners of the company. I got the soap, body wash, balm and lotion. I wanted to make sure that I tried everything. Plus, I like to layer my products. I do this with everything. I buy soaps, lotions and even deodorant that matches my scent du jour.
I love the bath. One of my problems is that I own a jetted tub and have a habit of closing my eyes and opening them to bubbles galore descending onto the bathroom floor. I know you're not supposed to add ANYTHING to the tub but I have NEVER listened.
So, with the soap in hand I shuffle off to the bath. I was SO SURPRISED!!! First of all, the smell of the products is very pleasant but the scent doesn't stay on your skin. It leaves just a fragrance that I can only describe as "clean." I really like the smell and, to me, it's combination of lavender and eucalyptus. Here's the thing.......it didn't make bubbles galore!! It lathers wonderfully and dissipates in the tub. I have found a soap that I can use!!
I've given it three weeks. I've used all of the products and I can honestly say that they made me feel better. My hands are a real problem area for me and it helped. I don't know whether it will work for everyone but I really loved these products and I will definitely order them again.
It contains Lavender, Chamomile, Rosemary, Eucalyptus, Peppermint and Birch Bark. Lavender and Chamomile are relaxants. Rosemary, Eucalyptus and Peppermint have anti-inflammatory properties and Birch Bark is an analgesic.
When you see the products on the website now you will see that the Fibromyalgia and Arthritis Lotion has been taken off and it's now just called an Essential Oil Lotion. It really irritates me that someone can lodge a bogus complaint against anything and bring the wrath of the FDA down upon your doorstep and you'd better comply. They don't give you a time frame. You just better change everything and then they will take their sweet time in getting back to you about those changes.
I get that the public needs to be protected.
There's a lot of garbage out there.
But when the claim is unsubstantiated???
Protecting the public??
What a crock.
I have to say that I LOVE the products and will order them again.
Even if they didn't give me relief I'd still order them.
It's that bath thing and an FDA thing.
Thursday, February 19, 2015
I always knew I was dysfunctional.
I just didn't know it ran so deep.
Clear down to my neurotransmitters.
I think we all have a dysfunctional neurotransmitter system. There has to be a reason that we don't all have the same symptoms and we don't all respond to the same therapies and medications.
We have pain perception problems.
Isn't this linked to neurotransmitters?
Chronic stress can contribute to Fibromyalgia but it isn't a cause, otherwise, everyone on the planet would have it. We all know that chronic stress changes the neural pathways in the brain but to what end? Depression isn't the cause because not everyone who is depressed has Fibromyalgia. I think it's like everything else. There may be risk factors for the development but that doesn't mean you're going to get it. There may be a genetic predisposition depending on many things, but again, what is the trigger?
I'm on a roll here.
So what do we know?
1. We know that Substance P, glutamate, are elevated in Fibromyalgia and this accounts for an increased pain sensitivity.
2. The lowered levels of serotonin and noradrenalin in the central nervous system could be the reason that the descending neural pathways are messed up. This can cause issues with sleep and depression.
3. The HPA (hypothalamus-pituitary-adrenal) axis and the sympathetic nervous system are off but it may be a symptom but not a cause of Fibromyalgia. Dopamine levels are also off which can cause our achy-breaky stiff muscles and brain fog.
I'm not a doctor (obviously) but doesn't this suggest subgroups? I know people with Fibromyalgia and they have pain but the fatigue seems to be more of an issue than the pain. With me....yes, I have the fatigue but pain is far more of an issue with me. Maybe this is why medications like Cymbalta and Savella work well with people who have more of an issue with serotonin levels and less of an issue with elevated Substance P and glutamate.
Maybe by targeting the specific subgroups and medications that work specifically for that group.....is that a way to get better results than lumping us all into one group? It seems that pain with depression and pain without depression respond differently to medications.
The only thing that works for me is the oxycodone in very small doses (5 mg.) and Zaniflex which controls the muscle spasms. Lyrica made me squirrely and gain weight and did nothing to help the pain or fatigue but others swear by it.
What I find VERY interesting is that Zaniflex (tinzanidine) reduces Substance P levels. Since the prevalence of pain is my main issue isn't this why this might work for me and not for someone that has a predominance of fatigue?
I think that the argument against using opioid in treatment has more to do with the general issue of doctor liability and the risk of dependency. Right now it's politically correct to be against these in pain management because of a group that abuse them.
I don't like a lot of them because of the addition of acetaminophen. Long term use can cause damage to your liver. When I went on the oxycodone my pain doctor and I had a long talk about it. He did explain the risks but also told me this would be better as a long term treatment because of the damage that anything with Tylenol or acetaminophen would cause. He knew that addiction and dependency were two very different animals and I was low risk for addiction.
I just don't think you can pour everyone with Fibromyalgia in a bowl.
It's like making a cake.
You need to add one ingredient at a time.
If you add too much of one,
You get a mess.
This is what they've done with us.