Fibromyalgia Thread

[tiggspring]

Hey guys this is a post I had way back before many of you joined. I would love to help Tracy and the other newer posters to post their ideas. Maybe when we are forced to start a new thread we can post them on top.

I would add buying a pressure cooker and buying a Roomba to do the vaccuming for me to my list from 2009

Warning this is a little long even for me.

Since we have all been dealing with flares for one reason or another I was wondering what tricks everyone has come up to make life easier. He is a list of some of the things I do:

I have a pair of "grippers" on every floor of my house so I can pick up and reach things without killing myself.

DH bought me a hot wax treatment set up so I can warm up my hands and feet

I used to do 30 day gourmet freezer meals with a friend. Every month we would switch off cooking multiple chicken or beef meal then freeze them . once we swapped we would have 16 to 20 meals put up in our freezers for days when we couldn't cook. I buy 20 lbs of chicken or beef on BOGO and save a ton on groceries too. I was able to do this alone last Sept and didn't worry about cooking till DEC. I find this very hard to do alone though.

Did you know that you can cook a whole frozen chicken and it comes out perfect? I had to do this with a turkey one thanksgiving one year when the turkey didn't unthaw and found out from butter ball you can cook it frozen. this is great when I cant cook but have plenty of time at home to cook the chicken. I always use a meat thermometer when I do this.

I bet most of you use crock pots

This past spring we bought my brain..oh I mean phone. DH and I both have blackberries and have the calendar set up so he can send me his appointments and I can do the same. each appointment has an alarm so I don"t forget....sometime still do LOL Also this year I use the kitchen timer and phone alarm clock to remember to get the Kids etc. I get a little lost with time and If something distracts me well I might not meet the bus which for the next five years I have to meet at 6:45am, 8:30am 3pm and 4:15pm. Our bus stop in 1 1/2 miles away and it all wooded and we have a bear! The bus co. thinks my kids should walk even in the winter. I think they are NUTS!!! DH does first trip most days thank God!!

I have a basket that fits on my stairs that I'm supposed to use to bring things up and down. Thing is I always overfill it then leave it there..

I found these great socks at JC Penney that have arch support built in which feel really good on my feet. they were in the men's dept. When my feet really hurt those crazy colored, shaggy type socks that are in the Jr section are warm and really lite.

Just started puting my vitamins in little bags. sort them out in muffin tins and then use the tin liner to just slide the pills in the bags. I tried to use those pill containers but many of the pills would absorb humidity. I never can consitanty do these pills week to week. heres hoping this helps us stay on track with suppliments! Why didnt I think of that before?

I have 3 slaves...ah Kids DD fold laundry, DS puts away dishes and DD picks up shoes and things on the floor since she is still short!! Did I really admit to this?

I used to have a Nanny when I could afford it. She would watch the kids and do dishes, fold laundry and anything else she could fit in while I slept upstairs. She is a good family friend now. We have tried several times in the last year or so to replace her but nobody wants to work. My DD 10 does a better job with the laundry and DS does better job putting away dishes. I don't expect perfection just adequate.

Any other ideas everyone?

Sending pain free vibes and pixie dust to all

 

[tiggspring]

My kids go back to school next week so my days and computer will be mine . I hope to adjust to the new sleep schedule quickly as migraines are my symptom Dejour and fatigue is a bit lower on my list Hopefully I can get us all chatting again and update you on my trip from back in june.

Sending pain free vibes and pixie dust to all

 

[Jonesloonybin]

Hi! I wanted to introduce myself. I have been struggling with my medical issues for 7 years now, but was just recently diagnosed with Fibromyalgia. On one hand, I am so glad that I finally know what is going on, but I am still trying to figure out what this means for me.

I am very thankful to see that there is others on here that understand what it is like.

Oh, my name is Terri and I am 36.

I am really hoping that some of the new meds will help and I am still researching to find other ideas/plans to help manage my symptoms.

Thanks
Terri

 

[scojos]

thanks ladies for the replies!!

today i have been to the local mall here in the UK show shopping for kids, and i hired an ecv for the first time...wow what a difference, was totally amazing so much so i am going to buy one for myself, having priced to weeks hire at wdw, a 2nd hand one still works out cheaper!!!!

i use my slow cooker (crock pot) all the time and also bulk buy meats, luckily dh is an ex head chef and has taken over the cooking for the last few weeks, but he goes back to school next week, so my conky body clock needs to sort itself out, and if necc my 15yr old will need to start getting his sister (10) from school again when im having bad days...

my probs apart from the normal, is sweating and transpiration and its freezing here in the uk!! god kknows how ill cope in aug!! any tips really are welcome!!

im looking in to the wax thingy for my hands, sometimes i cant even type!!

ty
tracy

 

[Earstou]

Hey guys this is a post I had way back before many of you joined. I would love to help Tracy and the other newer posters to post their ideas. Maybe when we are forced to start a new thread we can post them on top.

I would add buying a pressure cooker and buying a Roomba to do the vaccuming for me to my list from 2009

I love my Roomba!

I just bought a Mint to mop my new tile floor and am happy with it, too.

 

[SeaSpray]

how would u feel about a new fibromite joining in?? im a 39 yr old mother of 3 who was diagnosed about 2 months ago following a car crash last year. we are currently planning a return to okw next yr, as i dont know if after that i ll be physically or mentally able to cope.

i struggle with all the classic symptoms and am worried about fatigue (who doesnt) or, the other way, insomnia on my trip, dh has conviinced me to hire a ecv for the time we are there, and anything else will get dealt with! i struggle massively with sweating (and its cold here in the UK can u imagine aug in wdw????) as well as constant thirst and no appetite (we are going to be on the ddp so i may eat alot of kids meals or share lol)...

so, does anyone have any tips, not just on wdw, but also general life as im learning new stuff everyday!!
tracy

Welcome Tracy. I think that an ecv is an excellent idea. I don't use one at home, but I use them during our Disney World trips, otherwise I wouldn't make it through one day.

Did your doctor say that your constant thirst and sweating are from fibromyalgia? There are so many different symptoms related to fibromyalgia but I hadn't heard those before. I'm sorry that you are dealing with all of those symptoms.

Hey guys this is a post I had way back before many of you joined. I would love to help Tracy and the other newer posters to post their ideas. Maybe when we are forced to start a new thread we can post them on top.

I would add buying a pressure cooker and buying a Roomba to do the vaccuming for me to my list from 2009

I love my crock pot; I just need to find more recipes for it.

My kids go back to school next week so my days and computer will be mine . I hope to adjust to the new sleep schedule quickly as migraines are my symptom Dejour and fatigue is a bit lower on my list Hopefully I can get us all chatting again and update you on my trip from back in june.

Sending pain free vibes and pixie dust to all

Looking forward to reading about your cruise experience, Tigg.

Hi! I wanted to introduce myself. I have been struggling with my medical issues for 7 years now, but was just recently diagnosed with Fibromyalgia. On one hand, I am so glad that I finally know what is going on, but I am still trying to figure out what this means for me.

I am very thankful to see that there is others on here that understand what it is like.

Oh, my name is Terri and I am 36.

I am really hoping that some of the new meds will help and I am still researching to find other ideas/plans to help manage my symptoms.

Thanks
Terri

Terri

What medication are you taking? Different medications work for different people, so if the first one doesn't work or gives you negative side effects then ask your doctor for something else. I've been taking Lyrica for a few years now. I guess it helps. I just increased my daily dosage so I'm hoping to feel a little more relief soon.

thanks ladies for the replies!!

today i have been to the local mall here in the UK show shopping for kids, and i hired an ecv for the first time...wow what a difference, was totally amazing so much so i am going to buy one for myself, having priced to weeks hire at wdw, a 2nd hand one still works out cheaper!!!!

i use my slow cooker (crock pot) all the time and also bulk buy meats, luckily dh is an ex head chef and has taken over the cooking for the last few weeks, but he goes back to school next week, so my conky body clock needs to sort itself out, and if necc my 15yr old will need to start getting his sister (10) from school again when im having bad days...

my probs apart from the normal, is sweating and transpiration and its freezing here in the uk!! god kknows how ill cope in aug!! any tips really are welcome!!

im looking in to the wax thingy for my hands, sometimes i cant even type!!

ty
tracy

Tracy I'm glad that you tried an ecv. The warm wax thing does sound good, I'll have to look in to that, too.

I love my Roomba!

I just bought a Mint to mop my new tile floor and am happy with it, too.

My sister loves her Roomba too. LOL What is a Mint? Is it similar to the Roomba but a wet version??

 

[Jonesloonybin]

Right now the doc has me on Amitriptyline (Elavil), Ambien, and Meloxicam (Mobic). I am also taking Norflex. I have FINALLY got my IBS under control with diet changes and probiotics.

The doctor said it will take 4 weeks to really know if the Elavil will help or not.

I also spend a LOT of time with the heating pad. The pain is pretty bad right now, so I am hoping the meds work soon.

Thanks

 

[tiggspring]

Right now the doc has me on Amitriptyline (Elavil), Ambien, and Meloxicam (Mobic). I am also taking Norflex. I have FINALLY got my IBS under control with diet changes and probiotics.

The doctor said it will take 4 weeks to really know if the Elavil will help or not.

I also spend a LOT of time with the heating pad. The pain is pretty bad right now, so I am hoping the meds work soon.

Thanks

Elivil made me feel like bugs were crawling under my skin

Speaking of heating pad I have an extra long one the size of a body pillow. I used to be able to get them at walmart. When this one dies I think I may have to pick up on amazon.


Well here in PA it's tthe best of times its the worst of times. My kids are off to school on the down side I began having lft should pain that radiates outs with sweats yesterday afternoon. Feel like a heart attack and different from the heart/stroke symptoms I have on a weekly basis. I probably should go to ER but my Dr last visit started pressing anxiety/ depression anlgle even though I have NEVER been clinically anxious or depressed: I would know since I was a therapist, dh was a therapist my best friend is a therapist yet my dr who had MAYBE one psych class and a three mo rotaion in psych knows more than myself who 1 lives in my body and2. spent years working in a psych hosptal and even was therapist of the year! GRRRRRRR I hate dr lazy use of psych. Anyway with med records being electronic and shared between dr and hosp I afraid they will just pat me on the head and say "anxiety" which surprisingly I don't feel anxious at all. I worked hospice and have lived with all these crazy symptoms so long I figure I will live til I die since I doubt I will know a true heart attack/stroke til its tooo late. Last er visit with major stroke symptoms I saw a nuroligist 6 hrs later. 5 hr too late for stoke treatment if I had been taken seriously.

Can you tell I'm angry? I would like to be able to go to er so my dh could feel assured I'm ok but the price I pay being labled a hypocondriac or anxious is not worth my money or time. It is probably muscle spasims like in the past. I have taken asprin twice since 4pm Sunday. Send some pixie dust please. I will post a bit later to let you know I'm ok just really needed to vent. Thought my dr of ten yrs understood me then he lost sight of me...sees my illness not me grrrrrr.

Painfree vibes and pixie dust to all!

 

[tiggspring]

Feeling a bit better today. Was comatosed most of yesterday. Hopfully I'll get to take a few minutes for myself today since the kids are in school. Hopefully a long shower will get me out the door so I can window shop with no kids!

How are you all?

 

[SeaSpray]

Right now the doc has me on Amitriptyline (Elavil), Ambien, and Meloxicam (Mobic). I am also taking Norflex. I have FINALLY got my IBS under control with diet changes and probiotics.

The doctor said it will take 4 weeks to really know if the Elavil will help or not.

I also spend a LOT of time with the heating pad. The pain is pretty bad right now, so I am hoping the meds work soon.

Thanks

I have IBS too. From what I've read, it's fairy common for people to have both. Lucky us, huh?

I hope the meds kick in quickly for you. I started out on amitriptyline but I didn't have any success with it, so then my doctor switched me over to Lyrica. I guess it does help, but I have no way of knowing how I'd feel if I didn't take it. lol

I use Ambien most nights. My rheumatoloist started me on mobic, but it gave me stomach problems so I had to stop.

I just bought this heating pad a couple of weeks ago, and I LOVE it. I got it at CVS.

Elivil made me feel like bugs were crawling under my skin

Speaking of heating pad I have an extra long one the size of a body pillow. I used to be able to get them at walmart. When this one dies I think I may have to pick up on amazon.


Well here in PA it's tthe best of times its the worst of times. My kids are off to school on the down side I began having lft should pain that radiates outs with sweats yesterday afternoon. Feel like a heart attack and different from the heart/stroke symptoms I have on a weekly basis. I probably should go to ER but my Dr last visit started pressing anxiety/ depression anlgle even though I have NEVER been clinically anxious or depressed: I would know since I was a therapist, dh was a therapist my best friend is a therapist yet my dr who had MAYBE one psych class and a three mo rotaion in psych knows more than myself who 1 lives in my body and2. spent years working in a psych hosptal and even was therapist of the year! GRRRRRRR I hate dr lazy use of psych. Anyway with med records being electronic and shared between dr and hosp I afraid they will just pat me on the head and say "anxiety" which surprisingly I don't feel anxious at all. I worked hospice and have lived with all these crazy symptoms so long I figure I will live til I die since I doubt I will know a true heart attack/stroke til its tooo late. Last er visit with major stroke symptoms I saw a nuroligist 6 hrs later. 5 hr too late for stoke treatment if I had been taken seriously.

Can you tell I'm angry? I would like to be able to go to er so my dh could feel assured I'm ok but the price I pay being labled a hypocondriac or anxious is not worth my money or time. It is probably muscle spasims like in the past. I have taken asprin twice since 4pm Sunday. Send some pixie dust please. I will post a bit later to let you know I'm ok just really needed to vent. Thought my dr of ten yrs understood me then he lost sight of me...sees my illness not me grrrrrr.

Painfree vibes and pixie dust to all!

tigg I'm sorry about that. I can't believe that they made you wait, with stroke symptoms. That's unacceptable.

I went to the ER once with chest pains and they turned out to not be heart related. They were very good there, but now I feel funny going back again when I feel chest pains again for fear of being labeled a hypochondriac. I worry that I won't know a true heart problem if I have one.

My DH had a massive heart attack 2 years ago, at age 47. His symptoms started the night before, he had no idea he was having a heart attack until he went to the doctor the next day and fortunately our doctor hooked him up to an EKG machine and then called an ambulance to get him to the hospital where they had surgeons waiting.

Doctors say over and over again that if you even think you're having a heart attack or stroke, to get to the hospital ASAP. Do you think you should speak to your doctor about how he treated you the last time??? I'd be furious too, if I were you.

Feeling a bit better today. Was comatosed most of yesterday. Hopfully I'll get to take a few minutes for myself today since the kids are in school. Hopefully a long shower will get me out the door so I can window shop with no kids!

How are you all?

I hope that you feel better after a shower, and have a good time window shopping.

 

[Earstou]

My sister loves her Roomba too. LOL What is a Mint? Is it similar to the Roomba but a wet version??

The Mint is like a robotic Swiffer sweeper that moves around like a Roomba. It has a reusable cloth you attach either wet or dry. You can also use the Swiffer disposable cloths on it.
IRobot (maker of Roomba) also has the Scooba which deposits water on the floor, then sucks it back up, but it's about twice the price of the Mint.

I just got my Mint, and so far I'm really happy with it. House hasn't been this clean in a long time, lol!

 

[wildzootv]

I have stills...something very like fibro and lupus. I've had it for 37 years... Although I hate others are struggling it is nice having someone who can relate.

Sometimes if I get tired of conventuals meds or my body gets to use to it, I see a acupuncturist and take msn, seems to help more than meds I get for the doctor. We move often as a military family so I can't always find one.

 

[scojos]

morning guys!! its 5am here in the uk, cant sleep, woke up as hubby was snoring in my ear and as i moved the electric like pain in my back started, have swallowed some tramadol but 3hrs later, im slightly high but no where near ready to sleep!! im having my vitamin d levels tested in a few hours, does anyone else have issues with their vit d levels??

i also have a silly question *and its one only a brit could ask, does the heat affect the performance of pain killers, ie do u get more or less relief if its hot????

tracy

 

[Jonesloonybin]

I have IBS too. From what I've read, it's fairy common for people to have both. Lucky us, huh?

I hope the meds kick in quickly for you. I started out on amitriptyline but I didn't have any success with it, so then my doctor switched me over to Lyrica. I guess it does help, but I have no way of knowing how I'd feel if I didn't take it. lol

I use Ambien most nights. My rheumatoloist started me on mobic, but it gave me stomach problems so I had to stop.

I just bought this heating pad a couple of weeks ago, and I LOVE it. I got it at CVS.

I love this heating pad. I will have to have DH run up to CVS to see if he can find it.

I went out yesterday and it was a disaster. I tried to do too much, too soon I guess. I took my 9yr old DD to Homeschool day at the Science Museum and even though we only did one class, I had to hurry across two buildings to get to the class and then after we looked around (with me trying to sit down as much as possible). I am going to have to change my purse because it was too much to carry. We went to lunch with friends but the parking was a nightmare and I have to park 4 blocks away. I was in tears by the time I got home and I am sure I was horrible company.

I have stills...something very like fibro and lupus. I've had it for 37 years... Although I hate others are struggling it is nice having someone who can relate.

Sometimes if I get tired of conventuals meds or my body gets to use to it, I see a acupuncturist and take msn, seems to help more than meds I get for the doctor. We move often as a military family so I can't always find one.

I am already getting recommendations for an acupuncturist. What is MSN? I found that I can control my ibs better with supplements and diet changes. I hope that I can eventually do the same with the fibro.

 

[mommasita]

Hi everyone!!

I feel so guilty having not posted in so long. I apologize, and miss you and send pain free hugs and more to you all.

Basically it was/is this. My mother is addicted to pain medication. She is also extremely depressive and suicidal. When her meds do no more for her, she calls 911 and goes to the ER. She has a hip replacement a few years back, and complains for more meds. In between all this, she calls me asking for MY assistance in killing herself. I can not begin to explain how hard it is. My sister is MIA for about 6 years now, so I am the only child, and feel guilt. I finally just lost it on her, and told her that I love her, BUT my children come first. They were home for the summer and listening to me on the phone. I tried at best to hide, but really they are 13 and 17. I grew up with her attempting suicide every so often, and I refuse to have them go through it. The guilt sets in, I feel guilty. It is hard to just cut off ties, but I almost did. I told her that if there was anything I could do (without assisting suicide) I would do it. I would walk in fire I told her, If it helped, but I am not just going to get in the car and run to her house or the ER.. She gets nasty after, telling me I am lazy, making up illness?????? Very nasty. I am waiting on a referall for a therapist because it is sucking every bit of energy I have. She says I am so lucky to be healthy???????? I just don't get it, and I never will. I feel I have lost my mother while she is alive.

I saw my Dr yesterday, and I will begin to try rehab to go search for work part time. He thinks it won't happen, but we will give it a go. If not, my disability will be until I am 65.

My husband booked a VERY last minute cruise 2 weeks ago on the Explorer. IT did a WORLD of good, just having NO communication with my Mom. I worried, but I knew she would do fine... We literally booked on a Thursday, and embarked the following one.

I hope you all forgive just posting and leaving. I will try to be a more frequent poster..

XOXO Sherrie

 

[wildzootv]

I am already getting recommendations for an acupuncturist. What is MSN? I found that I can control my ibs better with supplements and diet changes. I hope that I can eventually do the same with the fibro.

I am sorry I misspelled it- MSM - it's a supplement and can be found in grocery stores!! I didn't know that at the time I purchased it at the acupuncturist but if she didn't recommend it to me I wouldn't of known!

 

[wildzootv]

Sorry to hear that Sherrie, I can only imagine the weight of it.

 

[Jonesloonybin]

I am sorry I misspelled it- MSM - it's a supplement and can be found in grocery stores!! I didn't know that at the time I purchased it at the acupuncturist but if she didn't recommend it to me I wouldn't of known!

Thank you! I will check it out.

 

[Jonesloonybin]

Hi everyone!!

I feel so guilty having not posted in so long. I apologize, and miss you and send pain free hugs and more to you all.

Basically it was/is this. My mother is addicted to pain medication. She is also extremely depressive and suicidal. When her meds do no more for her, she calls 911 and goes to the ER. She has a hip replacement a few years back, and complains for more meds. In between all this, she calls me asking for MY assistance in killing herself. I can not begin to explain how hard it is. My sister is MIA for about 6 years now, so I am the only child, and feel guilt. I finally just lost it on her, and told her that I love her, BUT my children come first. They were home for the summer and listening to me on the phone. I tried at best to hide, but really they are 13 and 17. I grew up with her attempting suicide every so often, and I refuse to have them go through it. The guilt sets in, I feel guilty. It is hard to just cut off ties, but I almost did. I told her that if there was anything I could do (without assisting suicide) I would do it. I would walk in fire I told her, If it helped, but I am not just going to get in the car and run to her house or the ER.. She gets nasty after, telling me I am lazy, making up illness?????? Very nasty. I am waiting on a referall for a therapist because it is sucking every bit of energy I have. She says I am so lucky to be healthy???????? I just don't get it, and I never will. I feel I have lost my mother while she is alive.

I saw my Dr yesterday, and I will begin to try rehab to go search for work part time. He thinks it won't happen, but we will give it a go. If not, my disability will be until I am 65.

My husband booked a VERY last minute cruise 2 weeks ago on the Explorer. IT did a WORLD of good, just having NO communication with my Mom. I worried, but I knew she would do fine... We literally booked on a Thursday, and embarked the following one.

I hope you all forgive just posting and leaving. I will try to be a more frequent poster..

XOXO Sherrie

I am so sorry you are going through this. My family has so much drama. (Not to that extent) When we lived in Oregon, we were always getting dragged into all the drama. We moved out here to NC and I LOVE it! I know that sounds cold and unfeeling. But I just needed some space for OUR family (dh and the girls) I didn't want them growing up the way I did.

It was the BEST decision I have ever made for my family. I know not everyone can do that. We have a lot of family so I did not leave anyone out there alone. We have lived here for 5 years and next year we are flying out to visit (the first time since we moved) and I am so STRESSED out. I am really not looking forward to all the drama.

 

[MrsHeg]

Hi,

My name is Debbie and my doctor suspects fibro, I have all the tender points plus some. My symptom is pain, my husband doesn't believe me when I tell him it hurts when he touches me, it's hard for me to understand it either, it shouldn't hurt to be touched but it does. Hurricane Isaac just came through and it was horrible, especially my hips and legs.

My doctor tried cymbalta but I couldn't handle the side effects, so we're trying savella now, it seems to be helping some. I've been off work for the past two months, I had surgery on my heel and achilles tendon, my incision got infected with strep and the surrounding tissue started to die. Now I'm going to wound care with hyperbaric oxygen therapy five days a week, I've had three debridements done so far with more to come.

I'm glad I found this thread, sometimes it makes things better just to find people who understand what you're going through. We have a trip planned soon and I insist that we are going to be able to go, looks like I'll be renting an ECV but I'm still going!