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Melas posted:
Happy Monday. Just started reading these posts and thought I'd join the group. Just got diagnosed with fibro a few months ago, although the symptoms started four years ago. It just wasn't daily. Had a rough time accepting this, as I am very physically active and healthy. Though I do have type 1 diabetes that is very well controlled.

So now I'm past the acceptance phase and into the angry phase. To be blunt, this just sucks. I have a good week every month (luckily) and was able to complete a 100 mile bike ride in Maine recently, then some hiking in Vermont.

Now I'm back to my home State of Florida, and the pain and stiffness have set in again. Still angry, still fighting this, still hurting. But I thank you all for also sharing so I know I'm not alone.
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meg_k responded:
Hi, Melas. Welcome! Of course you are not alone. This is a great community of people all focused on wellness in spite of Fibro.

I am a former active person/endurance athlete now doing almost nothing physically active since fibro symptoms have been kicking my behind. I just started doing graded exercise through PT, hoping I can get some level of conditioning back.

I am still trying to figure out the relationship (if any) between endurance sports and fibro. I personally think the sports I was doing made my condition worse. Prior to getting to a really bad point with Fibro (which I am still experiencing, years later) I was training for a triathon and sometimes almost collapsed during bike/run workouts due to the fatigue. It seems I know a disproportionate # of people who are distance runners or triathletes who now have FMS/CFIDS. I think there is a connection -- letting our energy "tank" get too empty.

Folks, any thoughts on this relationship?

Oh, and before MiMi can get a word in edgewise...make sure to have your Vitamin D levels checked regularly and if they are not in the 50-60 range (my personal advice; I'm not a doctor), take supplements to get your #'s up! You will find you feel better!

Meg K in MN
 
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Anon_10089 replied to meg_k's response:
That's interesting. I've never heard a strong connection with athletes and FM but it makes a certain amount of sense. For many, FM comes on after a trauma so maybe the training accumulates into a "trauma" to the body. Hmm.

For Melas, sorry for what you're experiencing. Be assured, this is a great place for information and support.

If you can find a way to keep your physical activity up, do it. You may have to adjust what you do. Become a hardcore swimmer? So much of FM is a mental game. So much of it becomes a "How much benefit will I get from this activity stacked up against how much pain it will cause me?"

I know more people with respond with more advice. Also, this board used to be a bit more active, so I'd encourage you to read through some of the older posts. Also, do a search for "Dr. Pellegrino". He used to post here and had great advice.
 
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Melas replied to Anon_10089's response:
Thanks for the welcome!!! As far as the fatigue (OMG it's bad when it hits right?) I found that when it's hit me was during physically challenging road bike rides. I ride, hike, and kayak and found that I have to decrease my intensity. Also, after keeping a log, it seems that my hormonal cycle plays a role in this. But since I'm new to this, maybe it just seems that way for now.

Seems like if I sit too long, like at work, or if I exercise too much at once, it's bad. Haven't found the happy medium yet. Yard work keeps me distracted so I don't notice it then, but I do after.
 
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Melas replied to meg_k's response:
How long have you had fibro? And was there a gradual increase to the intensity of it?
 
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bette_kaffitz responded:
Melas, my fibro began with a late-pregnancy backache that never went away. (This was 1972!) However, throughout my teens and early twenties, I roller skated at least 3 times a week for 3 hour sessions. Those skates are heavy. I had great legs!

My husband has recently been diagnosed with fibromyalgia on top of the osteoarthritis he has in most of his joints. He was a water skier when he was younger and has been active all his life as a mason-contractor and as a farmer. Both jobs require a lot of activity and brute strength. He always had and used both.

My personal opinion is that any type of pain--from migrane to phantom limb--that lasts long enough can trigger the nervous system changes we call fibromyalgia. Someday we'll know if I'm right.

In the meantime, do whatever it takes to calm your body. Take your vitamin D, eliminate any dietary triggers you may have, take a warm bath or shower morning and night. Practice sleep hygiene (same time every night with calming things like your bath right before). And streamline your house and your life to make things easier. (Pack up the knick knacks, etc.)

Do what you can to make your life more joyous and less hassled.

Bette
 
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Melas replied to bette_kaffitz's response:
Thank you for that response Bette. And your theory may prove right at some point as I work out intensely, or at least did till a couple months ago. I still exercise almost every day, but not at the same level.

I hope I can get over the angry stage of this soon and move on to incorporating a different lifestyle without fighting it so much. In time, in time.
 
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Melas replied to meg_k's response:
thanks for sharing Meg. I've had my D levels checked and they are at a great level. Most l likely from being out in the sun with activities daily (I live in Florida). But great advice.
 
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meg_k replied to Melas's response:
Melas, it's hard for me to say. PT was asking me the same ? and I have a hard time unraveling for me what was Depression symptoms and what was truly Fibro.

I guess I can most clearly trace it back to 2006 when I was postpartum. I felt like after labor my pain levels were out of whack and many sensations that should not be painful were.

That seemed to relent a bit after a while. The reality is I probably had post-partum depression, too which complicates things. But I started to get worse again when my baby started to have chronic ear infections that left her up in the middle of the night (and me too!) Once she started sleeping again, I coudl no longer sleep. That's when my symptoms got really bad. I woudl say I spent much of 2007-09 incapacitated by fatigue and pain, but I still worked FT and raised my kids!! My husband was also in a doctoral program.

By 2009-10, the depression (mood) is well treated, but then I really realize the underlying pain and fatigue is not going away. I woudl say this got worse and worse until this year when I've really started to see some improvements.

My brother has CFS and suffered with bad symptoms for years, but he would now say he is pretty much back to normal. So, I am hoping I can get there too. But probalby not back to triathlons.

Hope that long answer helps.

Meg K
 
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meg_k replied to Melas's response:
Great to hear about Vit D levels! One less thing you have to worry about.

I would suggest you keep an eye on your B12, too, and there is increasing evidence I've seen that Thiamin (which I think is B1?) levels should be watched also. Haven't gotten on that bandwagon. You are probably on top of all that already!

Take care, Melas, remember you're not alone!
 
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nononsenselady responded:
Hi Melas,

I have to tell you that I don't think Florida is the best state for fm. I live in Illinois which isn't too great for fm either, but in the winter it isn't quite so bad. Every February we spend in Florida and my fm is the very worse it ever gets. It is a real bummer to be on vacation and spend half the time in bed! We have been going there for 20 some years with the fm being really bad the last 3 years. So this year we are going to California to see if that helps. I spent July in Arizona and my fm was better there than in Illinois but not a whole lot. I think partly because it was their "monsoon season". I do think climates have something to do with the severity sometimes.
Laurie
 
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bette_kaffitz responded:
Melas,

I would definitely have a hard time in Florida starting in May when the hot, muggy weather starts. For those who are thinking of moving to a dry climate like Arizona, those who have done this say that the first few years are a little better, but after a while it doesn't seem to make any difference. (Of course, no one knows how bad the fibro would have been back at the home state--in either the good or bad Arizona years.) This was published in one of the fibromyalgia books I own, but I can't remember where. Must be fibrofog.

Bette
 
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booch007 responded:
Melas, Don't ever lose the anger to the point fighting it stops. It is that fight that has moved me forward in this so much.

Denial is first stage...feeling it is the wrong diagnosis....and the anger or tears can follow. I bounced back and forth in that for about 10 years....and have just gotten to acceptance with a bit of anger still to push me to move and move I do.

I refuse to give our dragon any more of me. I am quite active and at time pay dearly, but I have a life. A little different and smaller probably than it would have been....but a life none the less.

get educated and learn your tools to repair your problems. I love the book, FM and Chronic Myofascial Pain by Dr Devin Starlanyl and there is a new book as well. BOTH are PRICELESS to me.

I use Neurology to repair me and put Humpty Dumpty back together again every two weeks with trugger point injections. It is a great tool for me.

Good luck and so glad you found the board and can gain so much from those who walk this walk.

Welcome, Nancy B


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