View Full Version : Fibro pain starts with skin, not the brain.


MellyFishButt
06-26-13, 07:25 PM
I'm not sure if any of you have already posted and discussed this but it sounds promising. I would biopsy the crap out of my hands if it could tell me whether I had it or not.

http://m.medicaldaily.com/articles/16640/20130618/fibromyalgia-blood-vessel-constriction-deep-tissue-pain-skin-issue.htm

Horses mouth: http://m.medicaldaily.com/articles/16640/20130618/fibromyalgia-blood-vessel-constriction-deep-tissue-pain-skin-issue.htm

Anybody else have more info on this?

tudorose
06-27-13, 04:59 AM
http://www.medicalnewstoday.com/releases/262132.php

I think this explains a lot. I feel a lot like I've done a 100km ride even though I've just walked from one end of the office to the other. It's like there is a problem with getting oxygen into the muscles and it feels like lactic acid and toxins.

Fortune
06-27-13, 05:50 AM
Yeah, just walking around and doing basic chore-type stuff leaves me feeling like I just walked up a steep hill, and going shopping leaves me feeling like I spent the day running.

It's like I hit muscle strain extra fast.

tudorose
06-27-13, 07:46 AM
Today I had to round up a bunch of people and send them to a meeting room (I call it sheep dog duty). Afterwards I was so exhausted that I had to lie down on the floor to recover which gets strange looks in the middle of a big office.

I think that's why they say that we need to exercise to get better - coz we need to get oxygen into the muscles and work the lactic acid through. I'm thinking of starting Tai Chi coz I've heard it's good for fibro.

MellyFishButt
06-27-13, 04:08 PM
The only reason I found this was because I was having skin sensitivity and did a search for skin and fibro. Interestingly (to me), my pdoc was aware of it when we met yesterday and replied 'didn't that just come out a couple of weeks ago?'. So it looks like the (diverse) medical community is getting ample info on it which is awesome.

As for the exercise thing - ya, I notice that if I baby myself too much (ie waiting for pain to go away prior to doing something strenuous) it just makes me weaker and more painful over the next few days. But it's hard - chicken v. egg and catch 22.

Fortune
06-27-13, 06:10 PM
Hmm, exercise. I seem to end up in severe pain when I do anything strenuous - A few years ago I took a trip to San Francisco and both while walking around and after walking I was in so much pain that walking became a serious chore.

I've read that exercise can help, though.

tudorose
06-27-13, 11:02 PM
As long as it's below the pain threshold. For my kayaking is the best exercise but I don't live near the water so it's only on holidays that I get to do it.

Fortune
06-27-13, 11:30 PM
I seem to go from "minimal" to "I feel like my skin is on fire" a bit quickly.

Today I just fed the dog and my legs ache like I have the flu.

I'm sure there is a happy medium, I just don't have a lot of faith in finding it.

tudorose
06-28-13, 06:26 AM
I find that more I do the easier it gets (6 mins a day on the bike trainer) but the problem with me is that I like exercise so I get carried away and go and do something stupid like 15 minutes. Then I crash myself and haven't exercised in a couple of weeks so now I have to start all over again but the less I do the harder it is to get started again :(

Fortune
06-28-13, 06:36 AM
Hmm, I think starting at five minutes of cardio/day might work, and up it gradually.

I hadn't thought of starting small. Will have to see how it turns out.

tudorose
06-28-13, 09:15 AM
I've been doing a bit of reading about it to try and find an answer.

This is from an online article

Build Slowly
Start with 5 minutes a day and build by adding a further one minute once a week until you reach 30 minutes a day. If you choose walking or swimming, you can start with 15 minutes a day. One of the most frustrating challenges for FMS patients is knowing they used to be able to do so much more, and now some days it becomes a challenge just to get out of bed. Try not to become impatient and resist the temptation to pursue a pace of exercise you may have been able to do in the past. Remember you are taking control of your body and your condition. This will provide not only physical relief, but also emotional.

From http://www.womens-health-advice.com/fibromyalgia/exercises.html

I had been putting my road bike on the trainer (the road bike has been ergonomically fitted) and trying to ride for 6 mins with a cadance of between 60 - 70. Sometimes I couldn't do it so fast or for as long. As soon as I finished I'd get straight into a bath with dead sea salts which are like epson salts but with other things.

Then like the impulsive idiot that I am I thought I could increase it to 7.5 minutes and found I could only do it every 2nd day and now it's been about 2 weeks since.

I'm getting back into it tomorrow and am going to drop it back to 5 minutes a day and try and do it every single day and if I can do that for a month then maybe increase that to 5.5 mins and try to force myself to be sensible - I am hoping that one day I will learn that I need to be sensible.

MellyFishButt
06-28-13, 12:04 PM
Swimming was pretty helpful for me. I had zero pain and was able to strengthen my arms/shoulders which is my biggest issue right now. And I too cannot stop once I am focused on something. When I went to the pool the first time I swam for twenty minutes straight because I was so excited about the no-pain while moving. So stupid.

Tud, do you have an indoor pool where you live?

tudorose
06-29-13, 07:26 AM
Tud, do you have an indoor pool where you live?

There is one in the next suburb but the thing I find hard is getting to places. I pretty much use up all my energy getting to work, working and then getting home.

I find if I can't make it a part of my regular life it doesn't happen.

I'm glad that you found something that works for you!

Lunacie
06-29-13, 09:56 AM
Swimming was pretty helpful for me. I had zero pain and was able to strengthen my arms/shoulders which is my biggest issue right now. And I too cannot stop once I am focused on something. When I went to the pool the first time I swam for twenty minutes straight because I was so excited about the no-pain while moving. So stupid.

Tud, do you have an indoor pool where you live?

Because of damage to the disks in my lower back, when I'm in the water
my back spasms. Also, the chemicals are really hard on my skin, esp feet
and face. Wish it helped me - it would be worth the membership to the Y.

SquarePeg
06-29-13, 01:39 PM
Well this is interesting news to me. I suffered cfs/fybro from the age of about 18. It still hasnīt disappeared completely (age 47) but have learned to live with my low energy/fatigue.

I do remember just before it all started where I had a rash over my entire thighs, back and front, raised, red, bumpy and on fire.

The simplest task like getting up and ready for work would leave me feeling like I had run a marathon. I was exhausted, but not the type of exhausted were getting more sleep helps. In fact I didnīt need to sleep longer than anyone else (or I couldnīt).

tudorose
06-30-13, 03:35 AM
I'm just glad they've found out this coz at least I know that what I'm feeling is real pain rather than only a perception of pain.

And given how much else is wrong with my brain I'm glad to know that fibro isn't added to that list.

SquarePeg
06-30-13, 06:37 AM
I think that fibro and CFS are just names that docs give to people who suffer from a similar set of symptoms, I donīt think the cause is the same for everyone, therefore docs are never getting to the root cause in each case.

Some of the reasons I have read about over the years that contribute to these set of symptoms are an autoimmune problems (I have hashimotos, an autoimmune condition);
yeast overgrowth in stomach (not visible like thrush) things like sugary foods and carbs;
drinking or eating foods containing aspartamine (this is supposed to be very bad)
stimulants like red bull, coffee, caffeine (or adhd meds????)
MSG
neurological problems
gluten (though many donīt get any symptoms after eating gluten so wonīt know it)
leaky gut (avoid dairy and casein)
soy protein
things that cause inflammation in the gut (whether you are aware of it or not) will cause inflammation in the brain, which then causes the widespread pain throughout the body

so fibro is a set of symptoms rather than a disease with known cause/cure and so can be hard to find the real cause.

Fortune
06-30-13, 06:58 AM
SquarePeg, much more is known about CFS/ME* and FMS than most people realize. The popular conception is that they're these nebulous, hard to define diagnoses that are only handed out when doctors can't find another diagnosis that fits. Further, while CFS/ME and FMS are similar, they are not actually the same thing.

It is true that a part of diagnosis with these is eliminating other possibilities, but that's also true of ADHD and thus doesn't really serve as an effective argument.

In another thread, I posted a link to research on FMS that was pointing to rather tangible elements: FMS is somewhat heritable, and people who have FMS are more sensitive to pain than people who do not. These are not features of "I don't know what to call it, so I'll slap this label on you" syndromes.

Many people have theories about what causes or aggravates CFS/ME and FMS, but many of those theories are not particularly correct. Many feed into assumptions about what constitutes "healthy eating" and what does not. I do know that FMS is not an autoimmune disease. I am not sure as to the etiology of CFS/ME.

* ME = myalgic encephalomyelitis

SquarePeg
06-30-13, 07:06 AM
Fortune, I know they are not the same thing, but there isnīt a single cause known cause so if you have a certain number of symptoms, and widespread body pain being one of them, you may well receive this diagnosis. I suppose the point I was making is that receiving his diagnosis doesnīt actually help anyone because they only receive treatment for the symptoms and not the cause. So you may get antidepressants for the depression, meds for pain etc but not a lot to help the cause.

I had cfs (or the set of symptoms) and was given so much conflicting, useless advice by docs that I just had to deal with it on my own.

I guess I donīt want these people that have fibro on this board to rely on docs to help them.

tudorose
06-30-13, 07:08 AM
so fibro is a set of symptoms rather than a disease with known cause/cure and so can be hard to find the real cause.

You could also say the same thing about ADHD, that it's a set of symptoms rather than a disease with a known cause/cure. This doesn't mean that ADHD is only a set of signs and symptoms instead of actually being a read medical condition.

Did you read the article? If you look into it further these articles lead to more information about the more serious impacts of the shunts not working properly which then causes oxygen deprivation in the muscles which probably also lead to IBS and migraines and other things that affect the other organs. The article also mentioned low levels of inflammation which show up on blood tests.

This explanation makes the most sense to describe how I've been feeling for the last 2 years and even explains things from my childhood.

And there is a big difference in my opinion between CFS and fibro. That difference being the debilitating pain with fibro that is the primary problem plus the absence of sore throats and swollen lymph nodes which indicates that it is not caused by post viral fatigue. The new research in this article explains the pain and that is the main thing that needs to be dealt with. Sure I'm exhausted but if I wasn't in so much pain I might not be.

Delboy31
09-10-13, 03:10 AM
I have had problems with my skin all of my life, yet was not diagnosed with fibro until three years ago, when the stress levels at work became unbearable.

I have had so many skin issues in the last year, there are too many to list. This is a connection that I knew nothing about.:thankyou:

Lunacie
09-10-13, 11:42 AM
I am currently trying to understand whether a sudden increase in skin
sensitivity (especially to cold) is related to Fibromyalgia or Migraine aura.

Or is it both, since there's a theory that there is a neurological connection
between migraines and fibromyalgia.

Article Source: http://EzineArticles.com/402982
.

Delboy31
10-07-13, 12:38 AM
I was recently asked about skin and sensitivity. My therapist told me that they either have, or are, completing studies relating ADHD and skin sensitivity. If that's the case, and I too have fibro...maybe the three could be connected? Who knows.:)