Fibromyalgia Thread

[brighteyes]

Just passing thru..
I have "issues" that I suspect may be from fibro or lupus but not a firm diagnosis until I can get medical insurance.

I read the post by tiggspring about judging her day by how many "dollars" she has to get tasks accomplished or to just be able to function in a day.
It brought this to mind, thought I would share as it is a great story to print out and give to family and friends who don't "get it".

The Spoon Theory
http://www.butyoudontlooksick.com/a...poon-theory-written-by-christine-miserandino/

Hope everyone is having a good day and a good restful night.

I have been on these boards and the spoon theory is so right on!!! It is how we have to live our lives.

 

[brighteyes]

It was actually Sassy water that I posted on Dis dont know which one of us got our wires crossed on that one Cran water is just 1 part organic sugar free, 100% cranberry juice (hard to find without apple juice mixed in but very important for carb reaction) to 3 parts water. I buy it at my local grocery store but it is very expensive like $6 per 32oz On the other hand it lasts a long time. You can increase or decrease amounts as you like. You can also add 1 to 2 tbl of ground flax seed to this in the am and pm its called long life coctail. Its gritty but it is wonderful for keeping you regular and has the benifit of all those omega three fatty acids!

Cran water is used in the detox diet I used to try and they also reccomend a cup of hot water with lemon upon waking along with cranwater with flax. A great routine to get into but with three young kids I'm lucky to go to the bathroom in the first hour or so that im up. No way to relax with lemon water , long life coctail and a cooked protine breakfast. You can guess why that diet failed

Sassy water is used on the flat belly diet and is also wonderful for feeling clean and less bloated. Works really well when I go low carb.

Here is the recipie for Sassy water :
2 liters of H2O
1 tea fresh grated ginger root
1 medium cucumber peeled and thinly sliced 1 med lemon thinly sliced
12 mint leaves
I tend to put all the ingredients in a gallon of water instead of 2 quarts and let it steep longer. I use mint tea in place of the fresh since it can be hard to find fresh in good condition. To save money and energy I keep adding water until it loses its flavor usually another half to a gallon of H2.

Here to no water retention!

Really have to try this. I don't know about the ginger root though.

 

[brighteyes]

Just in case you are not aware of it, people who take Lyrica such as myself weight 20% more than people who do not take it as it causes weight gain. As you probably know, gaining weight does not help fibromylgia at all. It is a vicious cycle.

I got this information from a white paper I bought from Johns Hopkins.

Well i am here to tell you that is probably true. I gained weight from taking Lyrica. but the downside and result if I don't take it, I am crying in pain and am not functioning.

With the Lyrica, I can function to a pretty good degree, I have even been able to excercise gently and am losing weight. I am at about 28 lbs lost right now. Without the Lyrica I would still be a motionless crying lump on my couch.

It's not for everyone but it works for me and thank god because I don't think I could function without it. When I decided to go off it and immediately regretted my decision I realized I'd rather be overweight and not in deep pain every day than a few pounds lighter and miserable.

 

[tiggspring]

So glad to see you! I know how sick you have been. As far as the ginger root is it you don't like the taste or haven't used it before? I find it around the garlic in the grocery store.it really does taste refreshing just don't use too much ginger!

 

[tiggspring]

Well i am here to tell you that is probably true. I gained weight from taking Lyrica. but the downside and result if I don't take it, I am crying in pain and am not functioning.

With the Lyrica, I can function to a pretty good degree, I have even been able to excercise gently and am losing weight. I am at about 28 lbs lost right now. Without the Lyrica I would still be a motionless crying lump on my couch.

It's not for everyone but it works for me and thank god because I don't think I could function without it. When I decided to go off it and immediately regretted my decision I realized I'd rather be overweight and not in deep pain every day than a few pounds lighter and miserable.

So glad the lyrica is still working for you. I know you have been on it for awhile so its good that its still working.

As far as the weight I think it depends on where you start. My fibro brought me from 135-140 to 215-230 (yikes) so 20 more lbs is just weigh to much (pun intended ) I also have begun to have issues with fattly liver disease when I'm over 200 lbs. it so hard for me to control my weight so the liver issue is a big problem. I was so excited to be 181 in May then I crashed and I'm back up to 209 just 5lb less then what I started with. Hopefully I can work on it again soon

See you soon!!!

 

[brighteyes]

So glad to see you! I know how sick you have been. As far as the ginger root is it you don't like the taste or haven't used it before? I find it around the garlic in the grocery store.it really does taste refreshing just don't use too much ginger!

Hi Tigg!! I have never had it before so am wondering what it tastes like.

Yes, I feel like I am finally going to live. I am on a double dose of antibiotics. Can't remember what its called but not penicillin I am allergic. It makes my mouth taste like metal. I still do feel like crap, but my voice is coming back. I am also on codeine to surpress my cough. I have very sore ribs from coughing so much. Still get fits throughout the night but it is helping.

On the upside, I hope I had an interview the other day. Didn't sleep the night before, had a fever, no voice , all I had was a whisper, but was so paranoid to reschedule. They seemed impressed I think it went well. I answered a few questions not the greatest but I hope they don't realize. I was interviewed by two people and one of them already called my boss for a reference. My boss said she thinks I am in.

It is for a spot on the on-call list for supply Educational Assistants. So I will be on call which sucks, but can say not available if I am not well that day which is good until I can gage how much I can handle working.

Additionally, my application for disabilityI thought had a three month time limit that I had to have an answer to, but apparently not. I called today and they said that they are only working on June's applications and I should know sometime in February. So that kind of sucks.

I am trying to rest lots to get better just being a blob on the couch. I couldn't go to work today because I had no voice but tonight it is starting to come back. It has been a week of little to no talking and that is hard.

My sleep is still messed up. I went off my sleeping pills and am sleeping just not until 3 am. I also went last week for all my blood work to check for ebstein barr virus and mono and my liver, throid, etc. and a ultrasound on my neck/thyroid since it was so swollenI couldn't swallow for weeks. Haven't heard anything back yet of course, however a urine test showed that my white count is high. Why, they don't know yet? I am also waiting for a spec. appoint next month with an ear.nose.throat specialist to see if there is anything blocking my airway causing my sleep disruption. Ya, its called - my sinuses!!!!!!!

Anyways, that is it for me. That is why I haven't been around, have had a terrible bout with fatigue for the last two months and swollen glands, and now this laryngitis. I think I got that because my throat was so sore for so many months and swollen? Do you think that is possible?

Hope everyone is doing as well as you all can. Have a great day tomorrow everyone.

 

[tiggspring]

Hi Tigg!! I have never had it before so am wondering what it tastes like.

Yes, I feel like I am finally going to live. I am on a double dose of antibiotics. Can't remember what its called but not penicillin I am allergic. It makes my mouth taste like metal. I still do feel like crap, but my voice is coming back. I am also on codeine to surpress my cough. I have very sore ribs from coughing so much. Still get fits throughout the night but it is helping.

On the upside, I hope I had an interview the other day. Didn't sleep the night before, had a fever, no voice , all I had was a whisper, but was so paranoid to reschedule. They seemed impressed I think it went well. I answered a few questions not the greatest but I hope they don't realize. I was interviewed by two people and one of them already called my boss for a reference. My boss said she thinks I am in.

It is for a spot on the on-call list for supply Educational Assistants. So I will be on call which sucks, but can say not available if I am not well that day which is good until I can gage how much I can handle working.

Additionally, my application for disabilityI thought had a three month time limit that I had to have an answer to, but apparently not. I called today and they said that they are only working on June's applications and I should know sometime in February. So that kind of sucks.

I am trying to rest lots to get better just being a blob on the couch. I couldn't go to work today because I had no voice but tonight it is starting to come back. It has been a week of little to no talking and that is hard.

My sleep is still messed up. I went off my sleeping pills and am sleeping just not until 3 am. I also went last week for all my blood work to check for ebstein barr virus and mono and my liver, throid, etc. and a ultrasound on my neck/thyroid since it was so swollenI couldn't swallow for weeks. Haven't heard anything back yet of course, however a urine test showed that my white count is high. Why, they don't know yet? I am also waiting for a spec. appoint next month with an ear.nose.throat specialist to see if there is anything blocking my airway causing my sleep disruption. Ya, its called - my sinuses!!!!!!!

Anyways, that is it for me. That is why I haven't been around, have had a terrible bout with fatigue for the last two months and swollen glands, and now this laryngitis. I think I got that because my throat was so sore for so many months and swollen? Do you think that is possible?

Hope everyone is doing as well as you all can. Have a great day tomorrow everyone.

I would think you white cells would be elevated due to the infection.

 

[TLSnell1981]

I've had a rough few weeks. I get on the boards tonight and...this thread was on the top (of my saved threads).

My internal medicine doc retired suddenly and I can't get an appointment with my rheumatologist until the first of February! I can't wait that long and I'm praying for a cancellation. I hurt and I'm exhausted, but can't sleep.

I need and prayers!

 

[tiggspring]

I've had a rough few weeks. I get on the boards tonight and...this thread was on the top (of my saved threads).

My internal medicine doc retired suddenly and I can't get an appointment with my rheumatologist until the first of February! I can't wait that long and I'm praying for a cancellation. I hurt and I'm exhausted, but can't sleep.

I need and prayers!

Sending pixie dust your way!! Seems like most of us are having a tough fall. I've gotta call dr and get antibiotic refill I asked for monday..guess what I was right infection comming back wish they had listened monday . Good luck getting to your dr.

 

[tiggspring]

Weluvdizney

How are you feeling now that you are only a few weeks out from having your baby? Your little ones must be so excited. Sending lots of pixie dust your way!!

 

[tiggspring]

Bright

Giner has a warm quite spicey flavor. Really unlike any other spice. Gingere root looks like a fat knarly twigg. You have to peel the "bark" off of it before use. You cannot it it raw it is way to strong but you can crystalize it with sugar YUM!!!

Ginger is a great antinflamitory and is the natural form of the chemical used in celebrex. My dh takes a ginger suppliment for knee pain and it is good for nausia (ie ginger ale and ginger snaps)

Ginger capsals may be a suppliment some of you might want to try for pain and inflamation. I usually take this too. I have found no know side effects.

 

[onnawufei]

Let us know on the Lyrica, I am on Cymbalta now, but my next step is the Lyrica. I also want you to know that I looked through your Flikr account and your pictures are beautiful. Brought a smile to my face!!!

Thank you so much! That brought a smile to my face!

Obviously it's too early to really say anything about the Lyrica, but holy crap my butt is being kicked. Between normal every day life, starting a new medication, and my body deciding it wants to be female for a few days I'm dragging. And I've been soooo spacey. DH and I pick on each other a lot (out of love of course) and he was trying to pick on me in the grocery store but I was totally just off in my own world. I think he was a little disappointed that I missed his oh so witty comments.

I know how hard this is on families. I often tell my DH he has it worse. He can only go by what I tell him on bad days. I know if I'm really close to the edge but he can only watch and take the emotional brunt of my pain, frustration, fatigue and carry the load for two of us..Not easy for either side.

That is so incredibly true. DH wants me to feel better so badly, but there's really nothing he can do and that kills him. And I try so hard not to snap during a bad day and not to mope or act too depressed but sometimes I just can't help it. Our families seriously deserve awards.

Just in case you are not aware of it, people who take Lyrica such as myself weight 20% more than people who do not take it as it causes weight gain. As you probably know, gaining weight does not help fibromylgia at all. It is a vicious cycle.

I got this information from a white paper I bought from Johns Hopkins.

I didn't know that Lyrica caused weight gain, though it doesn't surprise me. I think Cymbalta did too. I'm not sure about Savella. So thank you!

Note to self: You have an exercise bicycle. Use it!

I figured since I didn't get a call back and since I am on the lowest dose that I will just stop. I feel 100% better already and feel like myself again. I am afraid to go back and read posts. Definitely not the "drug" for me!!

I would figure that since you hadn't been on it that long it wouldn't be too bad coming off of it. Cymbalta withdrawal can be absolutely brutal, and mine was no exception but I'd been on it for a while. At the worst part I was throwing things around my living room (well it was really more of a sweeping motion with my arms that threw things across the living room if you want to be technical about it), crying and saying I wanted to die. AWESOME! But I'm pretty sure withdrawal off most of these drugs can go like that, especially when you're getting withdrawal pains on top of pain from not being medicated. AND at the time my doctor didn't want to give me painkillers so yeah...


I feel like there was something I was going to say that wasn't just a response to someone else... but I forgot. I'm definitely feeling spacier than usual today.

*floats away*

 

[EDuke98080]

Sounds like you and me are having the same adjustment issues . Thank god I'm sleeping (yea!!!) Don't know how long it will last but being able to sleep and be truely oblivious to my pain and fatigue for a few hours is priceless!

Sending sleepy bugs your way!

Thanks! I need them!

 

[Tinker'n'Fun]

 

[onnawufei]

I've been losing some weight (not a huge amount) since starting to get my hypothyroidism in check, so maybe that will counteract the Lyrica weight gain. Probably not, but there's nothing wrong with a little blind optimism.

Tinker'n'Fun That sucks that your doctor took so long to respond. I have a... not really a love/hate relationship with my doctor, more like a love/aggravation relationship. On one hand I think he's great because he acknowledges that fibro is a real problem and I know that he really wants to help me. I can tell he cares. I also love his staff, even the woman who has to take my blood because she knows I'm afraid of needles and she distracts me. But sometimes I feel like my doctor doesn't pay enough attention to what I'm saying, and I always feel like he thinks I'm trying to get painkillers so I can abuse them or something. I don't know if that's what he thinks or not, but I feel like it.

 

[Tinker'n'Fun]

 

[tiggspring]

Ok totally new weird symptom. This afternoon I felt what I thought was a bee sting or painful bug bite. Since I was wearing long pants I couldn't tell which. Then about a half a dozen times during the night I again was "stung" but there was no bee or bug in sight. I also have no marks. Anyone ever have anything like this??

Also after a very succesful birthday party for my sone I now can't sleep and find myself in bed with my blackberry too tired to be on the computer to awake to shut off the lights

Hope you all are in dreamland tonight!

 

[brighteyes]

Ok totally new weird symptom. This afternoon I felt what I thought was a bee sting or painful bug bite. Since I was wearing long pants I couldn't tell which. Then about a half a dozen times during the night I again was "stung" but there was no bee or bug in sight. I also have no marks. Anyone ever have anything like this??

Also after a very succesful birthday party for my sone I now can't sleep and find myself in bed with my blackberry too tired to be on the computer to awake to shut off the lights

Hope you all are in dreamland tonight!

Hi Bonnie,

I get like a burning sensation on my skin, it feels like something is burning my skin like a chemical or a sting. It hurts, sometimes bigger areas than others. It is nerve pain I think. Mine has increased since I have been excercising, go figure.

It first started on my left index finger, and I would always yelp out loud "ouch" and look at my finger to see what happened and nothing there... same thing??

 

[brighteyes]

Hello all,

Last week I finally had an interview with the school board for an Educational Assistant position. It is only for the supply list so I would be on call.

I really need your pixie dust and prayers that I get hired. It is my foot in the door, one that I have been waiting years for. Last spring I was told that they were not hiring this year for the supply list as they had enough people. I was heartbroken.

Now they are - and I had an interview. They called my current boss for a reference and she gave me an awesome reference. That was on Thursday. I haven't heard anything since... I am really hoping and praying that I get on this list. It will allow me to work on days I am well and not on days I need to stay home and rest.

Please send positive vibes and pixie dust.......

Thank you.

 

[tiggspring]

Hi Bonnie,

I get like a burning sensation on my skin, it feels like something is burning my skin like a chemical or a sting. It hurts, sometimes bigger areas than others. It is nerve pain I think. Mine has increased since I have been excercising, go figure.

It first started on my left index finger, and I would always yelp out loud "ouch" and look at my finger to see what happened and nothing there... same thing??

Ihad a buring sensation that lasted for hours over my entire back several months ago.

This pain last for a minute feels like a shot then goes away. Think that's similer to what you have been describing but it was in varying spots on both legs