Fibromyalgia Thread

[tiggspring]

Thank you so much Tigg! AH! This is the BEST planning tool I have found yet! I love Ride Max! I hope that it executes as well as it plans! It looks like it will really help us manange our time if it works!

My experience on two separate May trips for our family of five was that is was +/- 3 min almost always less. It was kinda astonishing. However that was before the the FP changes. With a few exceptions (like toy story) we averaged 5min walk 5 min wait 3min ride. Which was perfect because it never allowed me to get too tired walking, my feet/back too painful standing or too stiff riding. We always knew when to plan for a longer wait and since they seem to err on the side of caution we found we did most Big things twice by getting fp before getting in line for soaring etc. We always did more than we thought or had time to relax so don't go commando with plan .If you deviate a bit because you see a ride with no line or dawdle a bit in a shop or plop down pooped no problem. In most cases just pick up where you ended. A 10 or 15 min delay is no problem and because you have played with the schedule you will know places it could be problem like the old version of Dumbo ride.

On a side note in Nov/Dec we were on a Dance trip w/o plans since were were at the mercy of the Parade tape schedule. We wanted to eat at BOG but it was only a possible soft opening. We could not get ressies for Dinner so we went there around 10.30am for very early lunch. The great thing about lunch is all the rooms are open and you can pick your room and table! We picked the rose room were just feet from the rose You order you food at a kiosk and it comes to your table hand delivered on a cart. You may want to try it.

Btw there used to be a Ridemax thread in trip planning. If you have any trouble finding it through search let me know I'll go back on my computer through my history and find it for you (I'm on mobile now). They can tell you how it has been running lately. Same true on BOG.

Another thing we did is have a link on our droids to menus from all ears and the snack thread here. (Brought printouts first year) That allowed us to plan in line and find GREAT snacks fast. A must with little kids and weakness brought on by fibro. Helps with fibro fog at dinner too because no pressure to order in all the chaos/ noise.

I found every step I saved. Every stress I navigated gave me much more energy. Besides who wants to pay to wait in line and be aggravated??. Makes good sense for anybody.

Good luck w trip!

 

[mommasita]

Tigg: Sorry to hear about all you are going through.. Major ones. Happy to hear that DH is feeling better.

I am doing as good as I can... Sleep is the issue. Daytime I get by with a system.. My Dr wants to wait until my appt in June to see where we go. The inflammation is too much to do anything right now.. I am to rest the shoulder when I can...

Hugs and thoughts all around

 

[tiggspring]

Tigg: Sorry to hear about all you are going through.. Major ones. Happy to hear that DH is feeling better.

I am doing as good as I can... Sleep is the issue. Daytime I get by with a system.. My Dr wants to wait until my appt in June to see where we go. The inflammation is too much to do anything right now.. I am to rest the shoulder when I can...

Hugs and thoughts all around

Don't you just love waiting? Hugs and deep sleep wishes coming your way from PA

 

[rosanab1031]

My experience on two separate May trips for our family of five was that is was +/- 3 min almost always less. It was kinda astonishing. However that was before the the FP changes. With a few exceptions (like toy story) we averaged 5min walk 5 min wait 3min ride. Which was perfect because it never allowed me to get too tired walking, my feet/back too painful standing or too stiff riding. We always knew when to plan for a longer wait and since they seem to err on the side of caution we found we did most Big things twice by getting fp before getting in line for soaring etc. We always did more than we thought or had time to relax so don't go commando with plan .If you deviate a bit because you see a ride with no line or dawdle a bit in a shop or plop down pooped no problem. In most cases just pick up where you ended. A 10 or 15 min delay is no problem and because you have played with the schedule you will know places it could be problem like the old version of Dumbo ride.

On a side note in Nov/Dec we were on a Dance trip w/o plans since were were at the mercy of the Parade tape schedule. We wanted to eat at BOG but it was only a possible soft opening. We could not get ressies for Dinner so we went there around 10.30am for very early lunch. The great thing about lunch is all the rooms are open and you can pick your room and table! We picked the rose room were just feet from the rose You order you food at a kiosk and it comes to your table hand delivered on a cart. You may want to try it.

Btw there used to be a Ridemax thread in trip planning. If you have any trouble finding it through search let me know I'll go back on my computer through my history and find it for you (I'm on mobile now). They can tell you how it has been running lately. Same true on BOG.

Another thing we did is have a link on our droids to menus from all ears and the snack thread here. (Brought printouts first year) That allowed us to plan in line and find GREAT snacks fast. A must with little kids and weakness brought on by fibro. Helps with fibro fog at dinner too because no pressure to order in all the chaos/ noise.

I found every step I saved. Every stress I navigated gave me much more energy. Besides who wants to pay to wait in line and be aggravated??. Makes good sense for anybody.

Good luck w trip!

BOG sounds awesome! Will definitely try to hit it at least for a dessert

I am havng WAY too much fun with ride max. Lol. But it really looks like we will be able to do everything we want to in the 3 1/2 days we will be there YAY! Thanks again Tigg!

 

[carrie6466]

Hi ladies.

Hope everyone is doing ok. Tigg, happy belated Birthday!

I had two very unsuccessful dr appointments on Thursday. The endocrinologist wants me to test my blood sugar twice a day for the next 8 weeks. Then I had an appointment with the plastic surgeon. The tissue expander they put in when I got the mastectomy got infected and he had to take it out. I have to now wait until the infection clears up and the wound heals before they can try again. Minimum of 6 to 8 weeks. UGH

On the other hand, I finally booked my airfare and ME for my August trip 2 days before all this happened.

I'm determined, I am going!

 

[rosanab1031]

Hi ladies.

Hope everyone is doing ok. Tigg, happy belated Birthday!

I had two very unsuccessful dr appointments on Thursday. The endocrinologist wants me to test my blood sugar twice a day for the next 8 weeks. Then I had an appointment with the plastic surgeon. The tissue expander they put in when I got the mastectomy got infected and he had to take it out. I have to now wait until the infection clears up and the wound heals before they can try again. Minimum of 6 to 8 weeks. UGH

On the other hand, I finally booked my airfare and ME for my August trip 2 days before all this happened.

I'm determined, I am going!

OMG Carrie! So sorry for everything you're going through

Good on you for the positive attitude and determination! I hope everything goes well for you! Sending good vibes your way and wishing you a speedy recovery!

 

[tiggspring]

Hi ladies.

Hope everyone is doing ok. Tigg, happy belated Birthday!

I had two very unsuccessful dr appointments on Thursday. The endocrinologist wants me to test my blood sugar twice a day for the next 8 weeks. Then I had an appointment with the plastic surgeon. The tissue expander they put in when I got the mastectomy got infected and he had to take it out. I have to now wait until the infection clears up and the wound heals before they can try again. Minimum of 6 to 8 weeks. UGH

On the other hand, I finally booked my airfare and ME for my August trip 2 days before all this happened.

I'm determined, I am going!

Carrie, I'm so sorry you keep having these set backs. (((HUGS))). Sending healing thoughts your way. Enjoy the trip!

 

[mommasita]

Hi ladies.

Hope everyone is doing ok. Tigg, happy belated Birthday!

I had two very unsuccessful dr appointments on Thursday. The endocrinologist wants me to test my blood sugar twice a day for the next 8 weeks. Then I had an appointment with the plastic surgeon. The tissue expander they put in when I got the mastectomy got infected and he had to take it out. I have to now wait until the infection clears up and the wound heals before they can try again. Minimum of 6 to 8 weeks. UGH

On the other hand, I finally booked my airfare and ME for my August trip 2 days before all this happened.

I'm determined, I am going!

Poor thing.. You have gone through so much. I hope this is the last.

Yeah for your trip and booking your airfare

 

[tiggspring]

Nothing serious to talk about but really need to vent.

For my birthday I asked for a pedometer watch. It will count both my walking and activity in a pool when I go with kids this summer. Now I've been saying for yrs now my weight does not fit my activity level. While its true I do spend a fair amount of time in bed, its also true that my kids keep me me very busy in short spurts. Our bus stop is more than a mile from our house so at minimum I am up to the car and back to the house 4x a day. We live in a house with A LOT of stairs. We have a plan for a chair lift or moving bedroom downstairs if I become wheel chair bound but I liked the stairs because it forces me to exersize just by doing everyday chores. ( I do have to have dh and kids bring things up/down for me). Now to what is bugging me I have ranged between 11,000 and 18,000 steps a day!!!! They say you need 10,000 to maintain your weight and I have gained 40lbs this year!!!!! I am morbidly obese to the point I may not fit on rides but I do not eat enough calories to be this weight and I'm not fooling myself about my movement either..I now have PROOF! Its bad enough to be in pain everyday and to feel like I want to drop every time I have to get up to pick the kids up but to be this fat is humilating and only makes my pain worse. They say my thyroid is fine despite a 75% incident of thyroid with my father and his siblings. Well I don't believe them. Something has to be off.

Now I'm going into more of a pain mode with less migranes and less fatigue so I usually have a 6 month window to lose weight and will even lose a few pounds if I do nothing. So I'm trying to be patient but......I HATE BEING FAT

To those of you going through major stuff on top of FMS please forgive me I know its a small thing in comparison. I just needed to get it off my chest.

Thanks

 

[rosanab1031]

Nothing serious to talk about but really need to vent.

For my birthday I asked for a pedometer watch. It will count both my walking and activity in a pool when I go with kids this summer. Now I've been saying for yrs now my weight does not fit my activity level. While its true I do spend a fair amount of time in bed, its also true that my kids keep me me very busy in short spurts. Our bus stop is more than a mile from our house so at minimum I am up to the car and back to the house 4x a day. We live in a house with A LOT of stairs. We have a plan for a chair lift or moving bedroom downstairs if I become wheel chair bound but I liked the stairs because it forces me to exersize just by doing everyday chores. ( I do have to have dh and kids bring things up/down for me). Now to what is bugging me I have ranged between 11,000 and 18,000 steps a day!!!! They say you need 10,000 to maintain your weight and I have gained 40lbs this year!!!!! I am morbidly obese to the point I may not fit on rides but I do not eat enough calories to be this weight and I'm not fooling myself about my movement either..I now have PROOF! Its bad enough to be in pain everyday and to feel like I want to drop every time I have to get up to pick the kids up but to be this fat is humilating and only makes my pain worse. They say my thyroid is fine despite a 75% incident of thyroid with my father and his siblings. Well I don't believe them. Something has to be off.

Now I'm going into more of a pain mode with less migranes and less fatigue so I usually have a 6 month window to lose weight and will even lose a few pounds if I do nothing. So I'm trying to be patient but......I HATE BEING FAT

To those of you going through major stuff on top of FMS please forgive me I know its a small thing in comparison. I just needed to get it off my chest.

Thanks

Here is the thing with MOST health care "professionals"... they are LAZY!

If you fall into the books range of "normal" then there is nothing wrong even though you know there is. You will have to seek out help yourself and that is when I would turn to a specialist. They can look at your results and say, "Wow you are on the high end here." I had to do this for my mom by researching stuff online. I am a good researcher Her results were in the "normal" range to the doctor but she was on the high end which was causing many health problems.

I am not kidding. For a general example say whatever it was they were testing had a range of normal from 45-165 and she was a 163 so "YAY! You're normal even though you are within 3 points of having a problem... my job here is done! Next!" This is the response I have been getting from people all my life. Same thing with my ADD. Some psychiatrists say I have it, others say I don't, but because I am 25 and able to work a steady job I must not have a problem. I constantly tell them that I feel like I'm losing my mind everyday and having to play catch-up because I always forget things and fall behind... but yeah... I got through college and I have a full-time job so I'm fine. UGH!!! It is so frusturating!

Anyway, a nutrionist may be able to help you or some other specialist. I hope that helps and hope you can find someone to give you some clear answers

 

[carrie6466]

Nothing serious to talk about but really need to vent.

For my birthday I asked for a pedometer watch. It will count both my walking and activity in a pool when I go with kids this summer. Now I've been saying for yrs now my weight does not fit my activity level. While its true I do spend a fair amount of time in bed, its also true that my kids keep me me very busy in short spurts. Our bus stop is more than a mile from our house so at minimum I am up to the car and back to the house 4x a day. We live in a house with A LOT of stairs. We have a plan for a chair lift or moving bedroom downstairs if I become wheel chair bound but I liked the stairs because it forces me to exersize just by doing everyday chores. ( I do have to have dh and kids bring things up/down for me). Now to what is bugging me I have ranged between 11,000 and 18,000 steps a day!!!! They say you need 10,000 to maintain your weight and I have gained 40lbs this year!!!!! I am morbidly obese to the point I may not fit on rides but I do not eat enough calories to be this weight and I'm not fooling myself about my movement either..I now have PROOF! Its bad enough to be in pain everyday and to feel like I want to drop every time I have to get up to pick the kids up but to be this fat is humilating and only makes my pain worse. They say my thyroid is fine despite a 75% incident of thyroid with my father and his siblings. Well I don't believe them. Something has to be off.

Now I'm going into more of a pain mode with less migranes and less fatigue so I usually have a 6 month window to lose weight and will even lose a few pounds if I do nothing. So I'm trying to be patient but......I HATE BEING FAT

To those of you going through major stuff on top of FMS please forgive me I know its a small thing in comparison. I just needed to get it off my chest.

Thanks

It's not a small thing to you, so that makes it just as important as anything else!

 

[mommasita]

Tigg: nothing is small my dear.. It is so frustrating. I was there a few short years ago. Have you had a second opinion on the thyroid?

Now, I am NOT in any way, shape, or form pretending I am a Dr, or anything medical.. Also, please remember my memory loss, in case you have (or I) have mentioned this before .. I was 70 pounds heavier 4 years ago, NO REASON, no eating difference, walking like yourself, not eating anything different. There was NO reason. I was SO SO frustrated. Everything checked out ok, and then my Dr checked my b12, and it was dangerously low. I tried the vitamins, and it seemed my body rejected them. I now self inject bi-weekly, as I have been diagnosed with Pernicious Anemia, which I am told is common in Fibro patients, and has many of the same sides.

I have lost that 70 pounds, and am steady. Not thin, not fat, just ok.. I changed absolutely NOTHING except this vitamin... When reading about it, it seems body builders cut this with something (brain fart) to stay lean, and if your body is low, which sooo many of us are, we store the fat.. My GF started taking the Jamieson pills, and has lost about 10 to 15 pounds this year, and gained that much more energy.. We can't have too much b12..

Sorry to be so blabby, I just know how I felt.. NOt that I have more energy , but I stored that weight, and I knew there was something weird going on, and my thyroid was checked a few times..

Lots of love and hugs to everyone.

 

[rosanab1031]

Tigg: nothing is small my dear.. It is so frustrating. I was there a few short years ago. Have you had a second opinion on the thyroid?

Now, I am NOT in any way, shape, or form pretending I am a Dr, or anything medical.. Also, please remember my memory loss, in case you have (or I) have mentioned this before .. I was 70 pounds heavier 4 years ago, NO REASON, no eating difference, walking like yourself, not eating anything different. There was NO reason. I was SO SO frustrated. Everything checked out ok, and then my Dr checked my b12, and it was dangerously low. I tried the vitamins, and it seemed my body rejected them. I now self inject bi-weekly, as I have been diagnosed with Pernicious Anemia, which I am told is common in Fibro patients, and has many of the same sides.

I have lost that 70 pounds, and am steady. Not thin, not fat, just ok.. I changed absolutely NOTHING except this vitamin... When reading about it, it seems body builders cut this with something (brain fart) to stay lean, and if your body is low, which sooo many of us are, we store the fat.. My GF started taking the Jamieson pills, and has lost about 10 to 15 pounds this year, and gained that much more energy.. We can't have too much b12..

Sorry to be so blabby, I just know how I felt.. NOt that I have more energy , but I stored that weight, and I knew there was something weird going on, and my thyroid was checked a few times..

Lots of love and hugs to everyone.

Good on you for pushing! I had to push my doctor for months before she finally referred me to my current rheumatologist who diagnose me with fibro. How do you self-inject? That sounds SO scary to me. Haha. I would like to try the B12 to help with my energy but I would have to go to a doctor's office for that

 

[mommasita]

Good on you for pushing! I had to push my doctor for months before she finally referred me to my current rheumatologist who diagnose me with fibro. How do you self-inject? That sounds SO scary to me. Haha. I would like to try the B12 to help with my energy but I would have to go to a doctor's office for that

My husband does it in my shoulder. Hurts and burns like nuts when it is going through, but I massage it...

If you can absorb the vitamins, then you could try it orally. Most can absorb it, somehow my messed up body rejects it..LOL

 

[rosanab1031]

My husband does it in my shoulder. Hurts and burns like nuts when it is going through, but I massage it...

If you can absorb the vitamins, then you could try it orally. Most can absorb it, somehow my messed up body rejects it..LOL

EEK! Yeah my bf has an aversion to needles so that wouldn't work :/ I will definitely try it orally first Thank you!

 

[tiggspring]

Momma,

Thanks for the b12 suggestion. My DH has been taking ribose supplement ordered by Dr treating his lyme-fibro. For the past two days I have taken b12 liquid sublingual and ribose for energy conversion/matabolism. I'm down 4lbs. . I don't know if its the supplements or my body cycling out of migraine/fatigue mode which always causes weight loss or just a monthly fluctuation. Whatever it is I'll take it. Hopefully its the supplements because then I will lose more.

In doing some research on b12 and weight loss this am I found a good site on Fibro treatment and self management. Thought it would be good for our Newbies and those of us who are always looking for something else to take the edge off.

http://www.fibromyalgia-treatment.com/

Pain free vibes and pixie dust to all

 

[tiggspring]

PS:

Momma, you asked me about my thyroid. I have had a second, third opinion and they always say "within normal limits" My dh new dr says that means nothing because there is another hormone the will block the conversion of t3/t4 making it like you don't have much at all. Problem is most drs won't test for it. It is one on the many odd things she tests for that caused my dh to need 20 viles of blood drawn at one time.

He is feeling guilty and I have to admit I'm feeling a bit resentful that he gets to go to her but I don't. We just don't have money. Truth be told I he must get treatment because if he stops working we lose everything. Sad state when there are treatments out there that help a lot but because they are not Big pharma treatments they get no attention and no payouts by insurance.

Ok vent over its a beautiful day and I plan to enjoy it. As Pooh would say TaTa for now.

 

[rosanab1031]

PS:

Momma, you asked me about my thyroid. I have had a second, third opinion and they always say "within normal limits" My dh new dr says that means nothing because there is another hormone the will block the conversion of t3/t4 making it like you don't have much at all. Problem is most drs won't test for it. It is one on the many odd things she tests for that caused my dh to need 20 viles of blood drawn at one time.

He is feeling guilty and I have to admit I'm feeling a bit resentful that he gets to go to her but I don't. We just don't have money. Truth be told I he must get treatment because if he stops working we lose everything. Sad state when there are treatments out there that help a lot but because they are not Big pharma treatments they get no attention and no payouts by insurance.

Ok vent over its a beautiful day and I plan to enjoy it. As Pooh would say TaTa for now.

Sorry Tigg! Hope you find someone just as good that you can afford. Totally understand the money thing though. I can't afford to go get all the treatments I need on a regular basis But we make do with what we got right?

 

[carrie6466]

Sorry tigg, i am going to join rosanab in this and just hope that everything works out for you somehow. I'll say a little prayer, send a little faith, hope and pixie dust your way

 

[mommasita]

I tend to forget about the difference in the medicare. I wish it were different

I've been quiet.. Just all around a little down.. Stupid shoulder was better, and this week has been horrible..
Not sure if I posted this, my Mother "tried" to come over for Mother's Day supper, never made it up my stairs. 911 was called, 100$ in meats almost wasted. We ate what we could. I sound cold, but it is simply her overusing her meds again. She is still there, I have been 3 times. Her husband refuses to listen, and was downright nasty to me.. Now they are trying to wean her off, but she will go back home, and it will be the same old.

I see the Dr about my shoulder and what we are doing June 5th.. Everytime I read my results I get more confused. My Rehab is angry saying we should be doing something, so I called my Dr, who says that he made the appt when he did so I could rest my shoulder, and the swelling is so bad it needs to go down first. Ugh.

Well enough about that. My son graduates HS June 25th, so we need to go suit shopping. I keep putting that off, like I do so much lately. I need to feel better and get stuff done.

I hope everyone has a nice weekend. Freezing here all of a sudden and rain.. Well, summer will get here right?

Gentle hugs to everyone. Hope SeaSpray is ok.