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Tuesday, Tuesday - 10/8/2013 ****
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dollbug posted:
Morning FMily...MiMi in NC and it is going to be a cool fall day today, hopefully without any rain. We have had quite enough for a while now. It is suppose to get to 61* today, it is 57* right now...so this is indeed a real change. I did sleep ok last night but woke up too early this morning as my DH headed out the door. I was able to drift back to sleep which was a good thing as I was still really very tired. I do feel better now.

So much going on everywhere. I hope things will indeed get better with these issues.

Welcome to the new members who have joined our FM support group. I am sure that soon each of you will find something that will help you cope better. It does take time and effort to find what might work for each of us. We are all different and what works for one may or may not work for another. Normally it takes a *combination of tools* that will make a difference so hang in here and learn what others have found that has indeed helped them.

Vitamin D...so important. Speak to your doctor about getting this checked, as it just might be a factor which could affect your pain level. I know it sure did for me. Low Vitamin D can cause additional pain for some people and it can also affect other illnesses as well.

Learning how to pace, pace and pace even more is a good thing...this has helped me a lot. Knowing just how much you can do and when to stop before you cross the line is also important for me.

Drinking plenty of water each day and watching what I eat also makes a difference. It seems like there are a lot of *little things* which sometimes we do not consider as being important can and does make a difference in the way I feel.

That's my story and I'm sticking to it. Have a great day.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

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ouchie4222 responded:
Good morning! TY for welcoming me as a newcomer. Today is glorious and I am going to make the very best of it. Have had a really rough couple of wks. I have been wondering if this condition lets up and returns with vengance with anyone else? It has with me, and wondered if i am misdiagnosed. I mean I thought i was almost all better! Now wether its the change in weather or the fact we closed our pool which i found to be the best exercise for me personally, I do not Like it one bit! I am looking forward to hearing others stories of things that have helped or triggers I can avoid. Not many people understand my pain. They say "Oh yeah thats the diagnosis when they rule out REAL problems". So having even one friend that understands would be nice. Sadly there is that saying that misery loves company, But it may just be true. I will be back. Have a wonderful day! May your pain be less. ~
 
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bette_kaffitz replied to ouchie4222's response:
Ouchie,

The "experts" say that fibromyalgia is not worse in cold, damp weather. Most of us here disagree. Some of my best days have been bitterly cold but DRY. People with "just" arthritis moan and groan about how horribly cold it is. I clamp my mouth shut. When they are hurting, it would be cruel to mention how much lower my pain level is.

Check around and find a warm water pool at the Y, or a hospital, or a physical therapy center. If you need a Rx, get it from your doctor. You'll be amazed how great a WARM water pool is for your fibro. If you can tolerate a slightly cooler pool, there are aquatic exercise classes that are FUN. If you need a warmer pool, go for a hospital or PT setting. The pool at our dinky little hospital is between 91 and 94 degrees. It's like a giant bathtub. A therapist starts you out--in the pool with you. Then you learn your routine and can be less supervised. There is always a staff member outside the pool watching. After a while, you may go onto a maintenance group--again with staff watching for safety.

It is a good way to get some exercise without ramping up the pain.

And fibro's pain does come and go--although I have a constant level 3 "hum" of pain no matter what. Bad days are usually a level 7 or maybe 8. There was one time when I hit level 10, but I wasn't lucid enough to really remember the worst of it.

Bette
 
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missist replied to bette_kaffitz's response:
Hi Ouchie, and Mimi & Bette.. and Everyone.

Ouchie-- yes it does come and go like that. A lot of things trigger it--most of us have some level of symptoms all the time--but then there are bad days or flares that last a long time.

Stress, the wrong food, sensitivities, allergies, weather (experts/schmexperts) over work, over exercise, not enough exercise... the wrong chair! yup.

I love to do my stretchy exercises in my hot tub. I hear you on the pool. we did not have one this year, but thankfully hubby got me a hot tub recently and I use it pretty much daily. That little time each day of stretching makes me much more flexible and able to climb stairs better, etc.

It is frustrating to most of us that we get this diagnoses when they don't find something 'real' --but trust me--this is real.

its good we can talk to each other--helps to realize how many other people are dealing with the same stuff.

Anyhow.. it was chilly here today! I not only turned off my AC--I had to talk myself out of turning on the heat. Put on some sweats and long sleeves and my sweater vest instead.

I had a flat tire when I was on my way to go get my MRI-- it turned out to be a real blessing as I was overwhelmed with how nice people around here are. I did not realize I had a flat when I left here, but knew something was wrong by the time I got on hwy. Pulled into gas station and a young man came over right away and offered to fix it--and he changed it w/o charging anything. Also-- one of my neighbors had seen me drive by and knew it was flat before I did-- she called the man who lives next door to me so he got someone to drive him and they all went looking for me to help. I'd already gotten some help but I was just so touched by the way these people who barely know me were looking out for me. I just moved in here in December, and Hubby is gone most of the time so I really appreciate the kindness of my new neighbors who all just really do look out for each other.

Anyhow I was late for the MRI but they took me and did the tests anyhow. That was a relief as well.

No idea what it will show yet. My worst fear-- I know this is pathetic--but -- please don't find 'nothing'. LOL. I just don't want to have spent more $ on 'just fibro'. I know--I should instead hope they don't find anything bad, but I just get nervous about tests, sometimes I think they are just 'humoring me' like I have 'crazy' written on my forehead or something.

Anyhow- that's a personal admission of how insecure this illness has made me over the years.

Or maybe I was already? dunno.

Anyhow very thankful for my helpers today.
Mary
 
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mnjeepguy responded:
Good evening everyone. It was far warmer than it should be today, and I gladly accepted it. I did not get to enjoy it until 4, had to work late. It was still warm and calm all evening. I even opened the windows for an our or so after dark, just to get some fresh air in.

The DW is doing better. I felt bad for her position. She is a bit of an overachiever and felt guilty just for thinking of quitting school. Either way we will be fine and just move forward. If there is one thing I have learned dealing with my own problems it's that living simpler and cheaper is never a bad idea. It is too easy to lose sight of what is truly important and get caught up working too hard for things we don't really need.

I had a weird morning. I woke in time, had the usual routine. Once ready to go, I sat in the kitchen staring at the clock, waiting for 6:45. When covering shift for someone it is 7 to 7, when I work days it's at 6:30. So, I should have left for work by 6:15, not 6:45! This was the beginning or a ridiculous and laughable foggy day for me.

So, it was a foggy day of being late for work, but a good day overall. My boss argued my tardiness with the office to avoid an attendance 1/2 point. I told him not to worry, I have had zero for over two years. We get them for being late or calling in sick. 6 in a year you are fired. Harsh but true.

Ouchie, we are all different, though many things affect us. The fact is anyone who has not had it does not know exactly what we feel. Even the Dr's do not. Mary's second paragraph summed it up.

People in general can't understand what they can't see. This is one of the biggest hurtles for sufferers, and why some don't think it's real. This is why you are in a very good place here. We understand the reality of this dragon, ( many here refer to it as such.)

Mine comes and goes and it can be hard to gauge. I keep a daily journal and try to record my pain level on a one to ten, my food for the day, weather, stress level, and general mood to track anything I may be able to link and control. It does help.

It was very humbling when I can sit and visit with my 70 plus year old, female neighbor and we way too much in common, fibro, pains, daily struggles, and I am 35 years younger.

To everyone have a great night, and take care.

Cory
 
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meg_k replied to mnjeepguy's response:
Hi, everyone. Thanks for the cheery greeting, MiMi. Even on days I can't post I look forward to those!

Welcome Ouchie (love the screen name!) -- I'm newer too. My pain and fatigue vary day to day, sometimes hour to hour. So, you are the same as the rest of us.

And, yes, Cory, it is truly a gloriously beautiful day in MN!!! Lovin' it!

Bette & Mary, just had to thank you for your comments -- they helped me so much!!! I'm sure you had no idea when you typed them they would touch another as they did me!

Mary: I nearly cried when I read your comment about your worst fear being they will find nothing on your MRI! I totally get that!!!!! I have borne many crazy looks from my loved ones by telling them I "hope" either the RA or the MS or the Lupus or Sjogren's testing will come back positive so I will have some "real" way to explain all these symptoms. My Dr.'s have been great in reminding me there is no such thing as "just" Fibro. It's real, and just because it's a "rule out" doesn't make it less so, but I still struggle with this a lot. Not that I want any of those awful other diseases, but if I'm going to be suffering, it would be nice to be taken seriously by greater society.

Bette: I have been struggling this week with the issue of how to label pain with a number when I saw your post. My PT wants me to journal pain & fatigue levels along with my activity level to see if there is a relationship. Well, I am not very compliant so I fight doing it. One of the reasons I fight it is I'm obstinant and I don't like "having" to do something that I'm not getting paid for - ha! But I also I hate it because it seems more complicated to me than just picking a number.

I struggle bc I think, sadly, I am getting very good at "living outside my body" i.e., trying not to stay connected with my physical "self" bc it hurts too much. So, when someone asks me to describe my pain, I struggle. I have to talk myself through it, telling myself: "sit still and allow yourself back into consciousness about your body for a minute, allow yourself to feel the pain and listen to all its howling and then get back out -- quick!" I feel like it's a probably not mentally healthy to exit your physical awareness like that -- a form of dissociation-- but it has become a survival mechanism for me.

So, after reconnecting mentally with the pain, then I am thinking about how do I possibly assign a number to all the usual deep muscle or joint pain, the roving pain I have that particular day, along with the pins and needles, the zaps, the muscle twitches and tightening and turn that into a single composite number? Bette, I was tying myself in knots because it's so hard to sum that all up!

After driving myself crazy with all of this, I decided my "usual" regular mix of trouble spots plus a few random pain spots du jour and the typical weird zaps and buzzing is just simply going to equal a 3 -- just like you said! The daily "hum" for me is going to be a 3. I am through overthinking it! The 3 works because even if I have trained myself not to pay attention, my pain level is never truly a zero. It's there every day and when you force yourself to pay attention and plug back it, it does hurt and it stinks!!! I have an easier time rating it when it's so bad I'm in tears.

Anyway, Bette, you helped me so much through all my neuroses by saying your everyday "hum" of pain gets a 3 rating! That was very validating. Thank you!

Peace and comfort to all. Meg K from MN
 
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bette_kaffitz replied to meg_k's response:
Meg,

The real problem is describing level 10 pain. By definition, you cannot carry on a rational conversation with level 10. (My one time was when a sinus infection decided to join my then-daily migrane. I woke up crying and couldn't even understand that it was the pain. Some Thanksgiving morning. On the bright side, one time in 41 years is not really so bad.)

Our Western NY sky is so blue, if you saw it on a postcard, you would say it was fake. Temp is around 65. Unfortunately, most of the leaves on our hillside were washed from the trees during the torrential rains we had over the weekend. But it is still a wonderful time of year. I still prefer the promise of Spring, though. Nights get down to around 40. Hubby makes a fire in the outside woodstove every night. What a sweetie!

I tried to post on the "hump day page, but it wouldn't accept anything. For those of you who wondered about the gabapentin/neurontin dosage, I was taking 600 mg 3 times a day for a total of 1800 mg. A girl in the pool with me was on the same dosage. (What a sad story. She was a flight attendant, her leg was injured on the job, and she developed fibro from that pain. This lovely young woman was only 24 and on disability!)

From the notice at the top of our board, we may not be able to post on Thursday. We'll see.

Bette


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