Fibromyalgia Thread

[Tinker'n'Fun]

 

[Tinker'n'Fun]

 

[Tinker'n'Fun]

 

[EDuke98080]

I made it through a milestone weekend, DD turned 18 on Saturday. Nothing says old like having a legal adult child!

I made it through though. I have been having some stomach issues along with Stamina problems and I was so worried I would ruin her day.

It turned out great though. We went and got her and her brother new Blackberries (early Christmas and probably one of the only times the two will be together) and then went for dinner at a Mexican place near the phone store. I was really worried, but I got plain chicken taco's and really just ate light. It was really good and I didn't overeat which made it much better. The whole night lasted 4 hours and she was ready to ditch us to meet her friends at the dorm.

I am still in shock that this week is Christmas. I really need to make a list and try to get up at least 1 hour earlier this week. That's 5 hours of wrapping and or cookie baking and it should help. DD offered to help with the cookies, so that should be good.

I went grocery shopping today, and while it was just 3 hours, I made it without major major pain. I think the Neurontin is helping me with the Stamina. Now I am sure I will be more sore tomorrow, but finishing the task was just fine. The house is full of food and Christmas dinner is planned.

Wishing you all Christmas pain free vibes!!

I am so glad you had a wonderful time Broccoli rice casserole (along with everything else) sounds really good. Could you share the recipe? I don't cook for Christmas we go to in laws and Christmas Eve is pot luck at my Mom's. I bring Gluten free mac & cheese so it is easy.

Merry Christmas everyone!

Erika

 

[Tinker'n'Fun]

 

[brighteyes]

Well finally went to the dr to get test results that i had done back in oct to test for cfs among other things. It is now official I have cfs.

I mean I always pretty much figured it but it is just depressing to know that I have this, there is no cure and I will most likely be tired dragging my butt around most of the time. I am just feeling sorry for myself. Hearing it just sounds so depressing

I am in a lot of pain this week from the fibro not sure if it's the weather or the stress of all that's gone all the last week.

Anyways, I hope everyone is doing well for the holidays. Tomorrow I will be done my christmas shopping. And then I can rest for a few days before the rush of visiting everyone.

Pixie dust for all!!!!!

 

[brighteyes]

My mother self-diagnosed that she has had for fibromyalgia 30+ years. Her primary physician (in whom I do not have a lot of trust) has tried things for her off and on, without much luck. Maybe that's just the nature of the beast.

I got a call from my mother (85 years old) this morning. She never calls! But said the pain in her hip is too much to handle. I called her primary physician, but it's his day off.

----> My question is, are all of you treated by your primary physician or do you see a specialist, and if you see a specialist, what field?

Thank you, thank you for any help.

Hi H2o,

I hope your mother is feeling better. To answer your question for the first three years or so having symptoms I saw my primary care physician who suspected fibro, and a few times went to a neurologist who suspected the beginnings of some arthritic illness. Additionally blood test indicated possible lupus, which sent me to a rheumatologist who said carpal tunnel That may explain my hands, etc but not th e rest of my body.

So finally, I landed at a rheumy who specialized in fibro and he diagnosed me with full blown fibro all over my body. 18/18 tender spots. So he instructed my primary care physician who treats me. If I have any other really out there new symptoms I will go back to him but he is in another town about 2 hours from me. So I just usually see my primary care physician. I have also seen a physiotherapist as the rheumy recommended one and had one from my car accident.

Hope that helps. Hope your mother is feeling better.

 

[Tinker'n'Fun]

 

[EDuke98080]

I sure will, but it will have to be tomorrow. My mom has it at her house, so I will get it and post. It is a microwave recipe that we learned together and is very easy.

So is gluten-free cooking very hard, somewhat hard, or just a real pain? I am sure if we started it, it would make a difference, but I am very hard on change, I don't adjust very well. (emotionally and tummy wise both)

Thanks for the recipe when you get a chance Tink! Gluten Free is not hard once you get the hang of it. You learn to substitute ingredients and products and just relearn what to eat. I used to eat a very limited diet because I always had stomach aches and heartburn so gluten free has actually expanded my diet and I eat better. I don't have tummy troubles now unless I get gluten. The hardest thing is for it to work you cannot cheat at all. Not one bit. The best thing is that WDW chefs are amazing and make gluten free amazing I have had a few change meltdowns and I was very grumpy the first couple of weeks. I also was amazed when the gluten fog lifted, talk about clarity of mind. I have heard others describe it as well. That foggy fuzzy brain feeling lifts and everything seems so much "sharper". It wierd but cool. Still have the fibro tho and the sleep issues but the pain level is less so I think it has helped me. Both my DS & DD are also GF and feel much better too.

Happy Holidays!

Erika

 

[EDuke98080]

Well finally went to the dr to get test results that i had done back in oct to test for cfs among other things. It is now official I have cfs.

I mean I always pretty much figured it but it is just depressing to know that I have this, there is no cure and I will most likely be tired dragging my butt around most of the time. I am just feeling sorry for myself. Hearing it just sounds so depressing

I am in a lot of pain this week from the fibro not sure if it's the weather or the stress of all that's gone all the last week.

Anyways, I hope everyone is doing well for the holidays. Tomorrow I will be done my christmas shopping. And then I can rest for a few days before the rush of visiting everyone.

Bright, I am sorry that you are felling down. Sometimes it is ok to suspect we have something but getting the official word still is a shock. My DD was that way with her Celiac diagnosis. We suspected it bit when the word came in it was still hard to accept. I hope your pain level decreases and you have enjoyable holidays!

Erika

 

[aboveH20]

Hi H2o,

I hope your mother is feeling better. To answer your question for the first three years or so having symptoms I saw my primary care physician who suspected fibro, and a few times went to a neurologist who suspected the beginnings of some arthritic illness. Additionally blood test indicated possible lupus, which sent me to a rheumatologist who said carpal tunnel That may explain my hands, etc but not th e rest of my body.

So finally, I landed at a rheumy who specialized in fibro and he diagnosed me with full blown fibro all over my body. 18/18 tender spots. So he instructed my primary care physician who treats me. If I have any other really out there new symptoms I will go back to him but he is in another town about 2 hours from me. So I just usually see my primary care physician. I have also seen a physiotherapist as the rheumy recommended one and had one from my car accident.

Hope that helps. Hope your mother is feeling better.

Based on all the suggestions I did make an appointment for my mother to see a rheumatologist. Unfortunately I don't have a lot of confidence in her primary care physician (and she has to walk down a flight of stairs to get to his office!) so i'm hopeful that the rheu MD will be more knowledgeable.

 

[brighteyes]

I haven't really done a lot of research lately but did the lack of results lead to the CFS diagnosis or is there is new blood test out there? Sorry that the diagnosis has you so down. Hopefully your doctor went over all the information and you are working towards the best course of action for yourself. Hope the fibro flair eases and your Holiday is good.

These are the tests that you knew I had done in October to test for the Ebstein Barr virus. They test if there are antibodies to the virus plus with my high white cell count that has been high for the last three years. We talked about this at length in October when I had it done, so am not sure what new test you are thinking of.
That way of testing has been out for a long time I think.

My results came back positive for the Ebstein Barr virus. I just never got the results till now so I did not know how they came out even though my dr. strongly suspected the results.So no new test just the same old I guess.

And no she did not really go over anything as before she tested said there was not really anything that could be done about it, just that we would know what was causing all the excessive fatigue. So there was none of that from her. Unfortunately. I just figured it's something I will always have to deal with.

 

[brighteyes]

Bright, I am sorry that you are felling down. Sometimes it is ok to suspect we have something but getting the official word still is a shock. My DD was that way with her Celiac diagnosis. We suspected it bit when the word came in it was still hard to accept. I hope your pain level decreases and you have enjoyable holidays!

Erika

Thanks Erika,

It is a shock just to hear it "officially". I can empathize with your DD with this. My pain level is increasing unfortunately. From all the constant running around. Hopefully it will ease up a bit before Christmas. I always seem to flair immediately before Christmas.

Hope you all feel better than I do!

Merry Christmas if I don't make it back!!!!!!!!!!!!!

 

[Tinker'n'Fun]

Wow, just WOW!! I'm out!

These are the tests that you knew I had done in October to test for the Ebstein Barr virus. They test if there are antibodies to the virus plus with my high white cell count that has been high for the last three years. We talked about this at length in October when I had it done, so am not sure what new test you are thinking of.
That way of testing has been out for a long time I think.

My results came back positive for the Ebstein Barr virus. I just never got the results till now so I did not know how they came out even though my dr. strongly suspected the results.So no new test just the same old I guess.

And no she did not really go over anything as before she tested said there was not really anything that could be done about it, just that we would know what was causing all the excessive fatigue. So there was none of that from her. Unfortunately. I just figured it's something I will always have to deal with.

Originally Posted by Tinker'n'Fun
I haven't really done a lot of research lately but did the lack of results lead to the CFS diagnosis or is there is new blood test out there? Sorry that the diagnosis has you so down. Hopefully your doctor went over all the information and you are working towards the best course of action for yourself. Hope the fibro flair eases and your Holiday is good.

 

[tiggspring]

Dear Fibro friends,

As most of you heard from me in our first hello this is a safe place where no one had been judged for a mispeak, mispell or bad day. With Fibro we all know our heads dont work right from time to time. Sometimes we dont write things well other times our brains dont connect the dots the right way. I know once I had mentioned somone was pregnant and they were not... that was a big oops that got laughs not flames (thanks guys)We have to cut each other alot of slack around here.

Tink I hope you can find a way to take care of yourself. Removing your post does not mean you were never our friend or that we have forgotten you. Everyone here knows how the fibro fog- anxiety and depression so many of us face day to day can impact how we feel about everone around us.


We care that is all.

To a flame free thread!

 

[tiggspring]

Merry Christmas to one and all!



May Santa fill your stockings with Pain free vibes, Lots of energy and love

 

[tiggspring]

Just in case Tink deletes her last post I wanted eveyone to understand what she was upset about ..the last post by Bright eyes which she reacted to by saying "i'm out". Here it is unedited. While I see some confusion as to what tink was refering to I see no flaming...This will be the last time I bring up this subject unless somone else here has any thoughts as to what might have happened. We all gotta take care of each other



Wow, just WOW!! I'm out!


Quote:
Originally Posted by brighteyes
These are the tests that you knew I had done in October to test for the Ebstein Barr virus. They test if there are antibodies to the virus plus with my high white cell count that has been high for the last three years. We talked about this at length in October when I had it done, so am not sure what new test you are thinking of.
That way of testing has been out for a long time I think.

My results came back positive for the Ebstein Barr virus. I just never got the results till now so I did not know how they came out even though my dr. strongly suspected the results.So no new test just the same old I guess.

And no she did not really go over anything as before she tested said there was not really anything that could be done about it, just that we would know what was causing all the excessive fatigue. So there was none of that from her. Unfortunately. I just figured it's something I will always have to deal with.

Originally Posted by Tinker'n'Fun
I haven't really done a lot of research lately but did the lack of results lead to the CFS diagnosis or is there is new blood test out there? Sorry that the diagnosis has you so down. Hopefully your doctor went over all the information and you are working towards the best course of action for yourself. Hope the fibro flair eases and your Holiday is good.
__________________
When it hurts to look back, and you're scared to look

 

[tiggspring]

BTW

Anyone looking for another diagnosis to rule out might want to get tested for cat scratch fever

My friend who is newly diagnosed went to a hematologist. He said cat scratch fever can lay dorment for many many years. he also knew of the xmrv virus studies surrounding FMS so thats very enroraging!

 

[EDuke98080]

BTW

Anyone looking for another diagnosis to rule out might want to get tested for cat scratch fever

My friend who is newly diagnosed went to a hematologist. He said cat scratch fever can lay dorment for many many years. he also knew of the xmrv virus studies surrounding FMS so thats very enroraging!

My DH had a terrible case of cat scratch fever. He was so sick with it. Luckliy he has never had any problems since.

 

[toocherie]

Hi there everyone: I have posted from time to time but promise to be more "present"--

I started this thread a while back because Fibro tends to be dismissed sometimes as not a "real" disease and as we all know it IS real and causes severe symptoms--at times worse than others.

I am glad the thread is still surviving and hope it continues to be a calm and reassuring place where people can share info and vent without repercussions.

Merry Christmas to you all and I hope 2011 is better for all of us!

Cheryl