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terbaer

Senior member
Joined
Apr 3, 2014
Messages
430
Reason
DX FIBRO
Diagnosis
10/2010
Country
US
State
WA
I had my first, and I mean first in a very long time, pain-free energetic day on Saturday. It was wonderful. I rode our horse (just walked her around for half hour or so, nothing hard-core), brushed her down, spent time outside. It was my mom's birthday so we went to dinner and hung out at our local casino with my family. I have close friends who live not too far from there so my husband and daughter went to their house and my friend came and hung out with me while I pushed the button and hoped to buy my freedom :lol:

She doesn't like to gamble and so we were on our way out after a short while and heard the music in the lounge. OMG, we danced and had a great time burning some energy through a few songs before heading to her place to go home.

Sunday, I felt a little fatigued, but pushed through it and took my daughter to watch some friends herd cattle at a local arena. Got home and slept 3 hours. I couldn't keep my eyes open any longer.

Monday, I was so sore and fatigued, I couldn't go to work. My IBS also flared up so I was stuck even if I had felt better. Went to work yesterday (Tuesday). Struggled through the day with some fatigue, but I was able to function. Woke up this morning feeling fatigued, but told myself I was going to go to work....no matter what. So I get ready, drop my daughter off at daycare and start heading to the office. Five minutes in and I have to pull over because I'm feeling woozy....Dang it! I make yet another call to my boss to tell her I have to turn around and go home. Spend the day laying in bed because I can't get up, but I can't sleep either. I just want to scream.....I want to finish my career! I want quality time with my family! I don't know what to do..... :cry:
 

mariposa

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Joined
Apr 19, 2013
Messages
459
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00/0000
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US
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I'm happy for your pain-free day on Saturday, terbaer. And glad to hear that you had fun and created some good memories with your horse, friends, and family.

The fact that those activities hurt you is so very unfair :-( and I'm sad to hear that... I'm thinking of that song "I Hope You Dance." I suspect that even though the pain and fatigue followed your great day, you're glad you did that dancing? (If I'm wrong about that, just tell me... it happens.) :lol:
 

dorann

Active member
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Jan 4, 2014
Messages
75
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Country
US
State
Kentucky
It really is a pain to have to deal with an illness where you are on such a rollercoaster. I'm glad that you did have a good day on Saturday but I'm sorry that you've not been feeling well since then.

With my husband, it seems like his good days are those days where the weather is a bit warmer and then when the temperature drops he is miserable again.
 

terbaer

Senior member
Joined
Apr 3, 2014
Messages
430
Reason
DX FIBRO
Diagnosis
10/2010
Country
US
State
WA
I'd do it again in a heartbeat. Thank you for the compassion and understanding. This forum has been so wonderful, I can't even express the gratitude.

I never thought about the temperature. You know, I do have worse periods (or longer periods) of flare-up when the weather is bad...Hmmm....I'll have to pay more attention to that and see if it's consistent.....
 

mariposa

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459
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I never thought about the temperature. You know, I do have worse periods (or longer periods) of flare-up when the weather is bad...Hmmm....I'll have to pay more attention to that and see if it's consistent.....

I think it's always good to keep some kind of journal about things like this... not just weather, but foods too, maybe. There's usually some kind of pattern with the weather. Sometimes even going out vs. staying in with a sweater, fan, heater, etc. makes a difference no matter how "small" it seems.

Weather events like rain, snow, ice, and high pressure systems can make a big difference in how the day goes for those with chronic pain.
 

Siderea

Senior member
Joined
Oct 22, 2013
Messages
231
Diagnosis
10/2013
Country
US
State
ND
My doctor uses a very helpful analogy with me about fatigue. It might help you. He said when everyone is born they start a new account at an energy bank. A healthy baby would deposit $100 into the energy bank, and as the baby grows up he would keep depositing more money in the bank and creating more interest. If that person had $1,000 saved up in their bank, they could spend all of it in one day and feel tired because of it, butif that person is healthy they'll gain $1,000 back again very quickly. But if that person overdrafts, spending more than $1000, then they have to rest extra until they are out of debt, and then take it slow until they recover the full $1,000 in their bank.

He said I was probably born into debt (I was premature with a heart complication and many severe food allergies) and I was born owing money to my energy bank instead of being able to start an account. My whole life up until last year I was living on loans, known as adrenaline. The energy I used to live wasn't my own. Last year my adrenaline finally decided to quit loaning me because it was also going bankrupt from supporting me. That's when chronic fatigue begun. I'm now forced to spend my time doing nothing but trying to get out of bankruptcy. On his regimen I've advanced to the point of breaking even most days. I might build up $25 of energy to spend, and I must invest it in myself so I keep building more energy with it. If I spend that $25, I don't get to build interest on it. Also, $25 isn't much, and If I end up spending energy I usually need to spend more than $25, and so I go back into debt.

This might apply to you, in that you can create energy, but you end up spending more than you have. When you have fibro, you always need a minimum amount of energy in the energy bank dedicated to the fibro. When we spend that dedicated energy on something else, we can't defend against a flare.

Does this make sense? It helps me a lot. When my husband asks if I'm up to doing something, I'm able to say something like, "I can spend $15 on that today, so yes, but let's keep it light and easy." He likes it, because it helps him understand my needs for the day too.
 

terbaer

Senior member
Joined
Apr 3, 2014
Messages
430
Reason
DX FIBRO
Diagnosis
10/2010
Country
US
State
WA
That's a great analogy! Yes, it makes sense. I think I've been in the negative for a while. I was told today by my counselor today that I need to quit fighting to work full-time and start accepting that I can't do it anymore. Not that I never can, but it's so inconsistent. She believes I need to start looking down another path and take a leap of faith that I'll find something part-time or qualify for disability. I don't know.....This is a big pill to swallow and scares the hell out of my husband as I've always been the major bread winner. Maybe if I can make some changes in my life I'll be able to start saving money in my energy bank.....Thank you Siderea!
 

mariposa

Senior member
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459
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Does this make sense? It helps me a lot. When my husband asks if I'm up to doing something, I'm able to say something like, "I can spend $15 on that today, so yes, but let's keep it light and easy." He likes it, because it helps him understand my needs for the day too.

I like this... it's a good thing for people to remember and it paints a nice light for those tunnels that seem to have no end. And yes, it makes sense for sure.
 

DDavies

Member
Joined
Apr 13, 2014
Messages
21
Reason
DX FIBRO
Diagnosis
12/2013
Country
US
State
NC
That's a great analogy and way to have loved ones understand what you may be able to do on any given day.
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
terbear, glad to hear you had a great time that Saturday! Sorry to hear it lasted so little for you (feeling well), it seems we all have to go thru bad and good days, sadly there are more bad than good days most of the time. Rest assured knowing you are not alone :) We are all one the same boat with you and will always understand you! I truly hope you feel better after venting here :) It always help to vent and talk about your feelings here.
 

terbaer

Senior member
Joined
Apr 3, 2014
Messages
430
Reason
DX FIBRO
Diagnosis
10/2010
Country
US
State
WA
Thank you Trellum! Thank you again Siderea! It is liberating to some degree to be able to just grumble and not have someone try to convey that they wished you would start feeling better. While I haven't given up on finding more answers, I'm finally at peace with the idea that I will have up and down days. I just wish I didn't have to lose family (son) and friends over this. I was there for all of them through some crisis or difficult time and now that I've gotten worse, I only have my parents and husband to support me. I was home again today with severe fatigue, headache, back and hip pain and diarrhea. I was in bed all day. I've realized through a lot of soul searching that worrying about whether I can make it to work or not is a HUGE stresser. I hate disappointing people. I have to take care of me now though. I want time with my family. Quality time....Changes they be a coming....Bring it on. We'll get through it.....Hugs to you all who have responded to me!.....
 

debee861

New member
Joined
Apr 23, 2014
Messages
2
Reason
DX FIBRO
Diagnosis
11/2011
Country
US
State
CA
Hello,
I am new here, but also have a rare disease called SYRINGOHYDROMYALGIA. It means I have a cavity in my spinal cord. It is incurable.
Before any tests were done doctors were diagnosing me with CF and Fibro. It took another several years and many tests and still no diagnosis.
I was out with a friend and had done a lot of walking and dancing, when I collapsed because I could not feel my legs. I ended up in the emergency room in more pain than I have ever known in my life and the doctor ordered an MRI of my entire spinal cord and brain. An MRI is the only way of detecting the injury to the spinal cord. Have you had one?
The doctor came back and told me I had a rare disease and he had to call a specialist to find out how to treat it. He said they were giving me medicine through my Iv and soon I would feel better and be able to move again.
It was like a miracle.
Bad news was this hideous disease and it's symptoms. It took me a while, but I put everything together and realized that I had been injured by the anesthesiologist just before surgery giving birth to my daughter. It took eleven years to get diagnosed but it could have been right after I gave birth if not right when the injury occurred.
My question is, How many who have been diagnosed with Fibro have had any injury to their back or had an epidural or spinal block?
Look up the disease I mentioned and check the symptoms.
Yes I am saying I believe that the two are strongly linked and for good reason not being tied together. Think of the big picture and how it would affect the medical community if it were known that they were the one's causing this hideous disease and who gains by the many who have it?Have you had problems with your back or a siatica? What is the number of women diagnosed to men? Don't count on the medical community to bring this to the front at this point in time.
In countries that do not have law suits these issues are discussed in the open. Doctors and hospitals have no fear of being sued and do not stand to gain anything other than knowledge.
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Thank you Trellum! Thank you again Siderea! It is liberating to some degree to be able to just grumble and not have someone try to convey that they wished you would start feeling better. While I haven't given up on finding more answers, I'm finally at peace with the idea that I will have up and down days. I just wish I didn't have to lose family (son) and friends over this. I was there for all of them through some crisis or difficult time and now that I've gotten worse, I only have my parents and husband to support me. I was home again today with severe fatigue, headache, back and hip pain and diarrhea. I was in bed all day. I've realized through a lot of soul searching that worrying about whether I can make it to work or not is a HUGE stresser. I hate disappointing people. I have to take care of me now though. I want time with my family. Quality time....Changes they be a coming....Bring it on. We'll get through it.....Hugs to you all who have responded to me!.....

I hope you got the job you told us about. After re-reading all this once again I get the feelings that things seem to be really improving for you, I can't help but to feel happy for you! I hope things are better with your family, I know how stressing it can be to feel like you are not getting the full support of your relatives in such a huge time of need! Hopefully things are much better for you now! You go girl!
 

terbaer

Senior member
Joined
Apr 3, 2014
Messages
430
Reason
DX FIBRO
Diagnosis
10/2010
Country
US
State
WA
I hope you got the job you told us about. After re-reading all this once again I get the feelings that things seem to be really improving for you, I can't help but to feel happy for you! I hope things are better with your family, I know how stressing it can be to feel like you are not getting the full support of your relatives in such a huge time of need! Hopefully things are much better for you now! You go girl!

Thanks Trellum! I did not get the job... :-( I was a little saddened, but overall, I figured it wasn't to be. I did, however get put on a month medical leave of absence with a new physician. I'm very relieved it happened. Not making it to work is so stressful. Unfortunately, I think I have a bug....I have hurt and felt achy like I've never felt before. I've only had a slight fever, but I can't get out of bed. I can't get warm and I'm in so much pain, my pain pills aren't even touching it.

My plan for the month is to learn to eat gluten free, rest up and try and get some exercise with my daughter. :) I haven't a clue about gluten free, and I don't know if it will make a difference. The new physician I'm seeing is holistic and believes this all stems from inflammation within your gut. So far no change, but it's only been a week. (Month off started yesterday, however)

I'm hoping the time off will help me to figure out where I'm headed and what is best for me...
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Oh, so sorry to hear that! i was already cheering for you, but don't worry, as you said it wasn't meant to be for some reason. I believe everything happens for a reason :) I'm sure something better will come along, just have faith!

I hope you get better soon, and best of luck with your gluten free diet! I heard isn't easy to do at first, but a lot people have seen great resuts on that diet, so give it time! Btw, is your family also trying the diet? Because I realize how hard it is to follow a new diet when you got to cook your own food and also the food for the rest of the family :(
 
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