Fibromyalgia Thread

[tiggspring]

Had my fibro dx in 1999, but I think I was pretty much born with it. I've been fighting pain for as long as I can remember.

Anyway, in the last year the pain and lack of sleep have rendered my immunity system useless. i can't fight anything off...hence I've missed a TON of work. I hate to give in, but am thinking of applying for pension disablity (not ss disablity) so that I can still work some. Probably part time, hopefully with flexible hours. I hate giving in, but don't see another choice. Anyone else go a disablity route? Do you feel any better now?

Katrina,,

Welcome!

I was diagnosed in 1995. I cant believe I have lived like this for nearly 20 yrs! I too have immunity issues. Before hand sanitizer I literally got sick every time I left the house . Now being a bit of a germaphobe I do better. When we take a long car trip my kids spray their shoes with Lysol before getting back into the van. 16hrs in a van with 5 people in/out of restrooms is a lot of germs to get on pillows toys ect that land on the floor! It works though. I have never got an infection/cold going to WDW. We went during the flu epidemic in 2009 and my friend that went before us and a friend that went the week after us all got sick but we didnt. Kids thought it was crazy to Purell both before and after each ride/buffet but it worked

I have been on SSI from almost the beginning but I was bedridden for two yrs and it takes very little for me to end up in bed for a day or two at a time. I also have symptoms of chronic fatigue and get migraines several times a week and can go a month or more with daily migraines. Being on disability gave me the ability to get well enough to function most days without doing the er revolving door which is what kept happening when I tried for two years to work with FMS. I really waited too long though. By the time I gave in I crashed to the point I couldn't take showers without DH standing by to keep me from falling and when he want home the pain was so bad I crawled sometimes to get from room to room. SO I would say it is better to go for disability when you spend as much time trying to recover from work as you do working. Lets be honest that is most of us most of the time. We have never done a poll but I think it is about 50/50 disability and still working here. I cant even keep up with kids and household chores so working is out for me but I never stop thinking of ways to go back when I'm having a good run. My husband thinks I'm crazy but I hope someday I will find a way to work again. He would want me to stay home and enjoy my life because so much of it I have felt miserable isn't that sweet

 

[tiggspring]

Momma, Seaspray

How are you guys doing today?



Sending pain free vibes and pixie dust to all!

 

[SeaSpray]

Seaspray

I'm so sorry about you dbil. (((HUGS))) He was so young. I know how hard it is when someone you love is on life support you can't stand to see them suffer one more minute yet you don't want to say good bye. Never enough time even if you have been battling for years. You and your family have been through so much recently . If I remember correctly you are planning a trip. I hope it gives you a bit of a respite after all of this.

Thinking of you in PA

Seaspray I am so sorry. My thoughts and prayers to you and your family...

everyone. and Thank you

Seaspray, so sorry for your loss.

Thanks

Wanted to say hi, I was diagnosed with fibro recently, and we are headed to Disney in a few weeks, yeah! Anyway I felt good for a few weeks, now I am getting low grade fevers again and feeling achy, hoping to feel better by the trip

I'm one of those people who've had to use a scooter for our WDW trips for the last several years. I hope you feel better by your trip!

Had my fibro dx in 1999, but I think I was pretty much born with it. I've been fighting pain for as long as I can remember.

Anyway, in the last year the pain and lack of sleep have rendered my immunity system useless. i can't fight anything off...hence I've missed a TON of work. I hate to give in, but am thinking of applying for pension disablity (not ss disablity) so that I can still work some. Probably part time, hopefully with flexible hours. I hate giving in, but don't see another choice. Anyone else go a disablity route? Do you feel any better now?

I've missed a lot of work the last few years; I was just given a verbal warning about attendance a couple of weeks ago. I think at some point I will have to consider seeing about disability, but for now, I'm still working, but only 25-30 hours a week.

Momma, Seaspray

How are you guys doing today?



Sending pain free vibes and pixie dust to all!

I'm doing ok. DH and I went to the mall today because he needed a new suit to wear to his brother's memorial service this Saturday. His brother (who just died) borrowed his good suit a while back and never returned it. When we went through his clothes the other day we couldn't find the pants. So... DH needed a new suit.

So I had a doctor's appointment this morning with my primary care doctor. DH came with me and emphasized how bad my fatigue and pain are. I have 2 new prescriptions; one for Adderall (yes, the ADHD medication!) and Flexeril to take at bedtime. The doctor feels that the Adderall will help with my severe fatigue. I'm at the point where I will try anything so that I'm not sleeping my life away, other than when I'm at work.

DH asked the doctor if I would qualify for a placard for Disability Parking, and he said I do. He filled out the paperwork today and I'll mail it in to the state tomorrow. He listed fibromyalgia and rheumatoid arthritis as the reasons, and checked off the "permanent disability" box. I guess it's about time that I start to accept this.

Today is my day off, so I'm glad about that. Now to relax with the heating pad, and wait for dinner to arrive (garden salad and turkey sandwich). lol

P.S. The doctor told me that I need to exercise more, and lose some weight. My next appointment is in a month, I'd like to have lost some weight by then.

 

[tiggspring]

Seaspray,

Glad you are managing to plug along. I have been taking flexeril since I was first diagnosed although only it makes me crazy tired so its for emergancies (like a fall) or when ativan isn't working. I actually have had to use it for the past two days as my back inexplicably locked up for almost a week. I cut mine in half and use only at night. Slept 12 hrs last night awoke and it was Noon! So if you notice increase in fatigue most likely flexeril is cause. BTW what is adderal supposed to do? I don't think anyone here has tried that but it might help with fibro fog.

Hang in there

 

[rosanab1031]

Hello everybody! Just got back from WDW last night so spent most of the day today sleeping. Haha. Everything hurts pretty bad but it was worth it! Had so much fun the last 4 days during my first WDW trip! Unfortunately there was a lot of rain and we didn't get to finish everything in Epcot I used a cane to get around (Which is why my wrists are killing me!) the parks and received some weird looks every once in a while. I went to city hall on our first day at the MK and got a guest assisstance pass. This allowed us to use the fastpass return on most of the rides so we ended up not waiting more than 30 minutes for any ride in any park. It was great Went through half a bottle of ibuprofen and about 1/4 of my vicodin. Haha. Not gonna lie... the alcohol helped too. Lol! Got a Grand Marnier Orange Slush at Epcot in Paris. It was tasty

Seaspray I am very sorry for your loss Before our trip one of my cousins passed away. It was a big surprise because he was only 47 and the family is taking it very hard.

Deerez Momma is right... Fibro sucks! But I hope you have a wonderful trip! How long will you be staying?

Wishing everyone a painfree day!

 

[tiggspring]

Hello everybody! Just got back from WDW last night so spent most of the day today sleeping. Haha. Everything hurts pretty bad but it was worth it! Had so much fun the last 4 days during my first WDW trip! Unfortunately there was a lot of rain and we didn't get to finish everything in Epcot I used a cane to get around (Which is why my wrists are killing me!) the parks and received some weird looks every once in a while. I went to city hall on our first day at the MK and got a guest assisstance pass. This allowed us to use the fastpass return on most of the rides so we ended up not waiting more than 30 minutes for any ride in any park. It was great Went through half a bottle of ibuprofen and about 1/4 of my vicodin. Haha. Not gonna lie... the alcohol helped too. Lol! Got a Grand Marnier Orange Slush at Epcot in Paris. It was tasty

Seaspray I am very sorry for your loss Before our trip one of my cousins passed away. It was a big surprise because he was only 47 and the family is taking it very hard.

Deerez Momma is right... Fibro sucks! But I hope you have a wonderful trip! How long will you be staying?

Wishing everyone a painfree day!

Glad you had a good trip. I agree on the alchohol. I drank every day on our cruise (something I had never done before) and it helped a lot ..very tasty muscle relaxant . Unfortunatly I drive my kids nearly every day so no drinking for me . How did ridmax work..is it still accurate? The gap didn't use to effect FP but they were liberal with rules even last fall. What is different now?

Thanks!

 

[mommasita]

Katrina..

rosanab1031.. Glad you had a good trip. I always am so exhausted after. It takes about a week to catch up..

SeaSpray: My thoughts remain with you and your family.

Hi Tigg, thanks for asking, how are you?

Same thing with my mother. She has pretty much given up, and lives in bed with a diaper

I saw my Dr about my shoulder. Well, I was told the partial tear will heal and probably has begun to do so. The full tear is Significant, as bad as what puts baseball pitchers out of a career. The Ortho said surgery won't work at this point, it would be a 6-8 surgery, and he isn''t confident. SO, now we start 6 weeks of slow therapy, and from there try cortisone, and hoping by then surgery will be possible.

I was like "OH, I didn't know it was THAT bad" .. DR was sooo nice. He stressed, and said I can't stress enough this injury isn't common, isn't easy to repair, and it is a LOOOOONG road. It can be years. So we must take the slow approach, and there is no quick fix. I heard that about 20 times.. Was recommended to me to ease up at home with cooking and cleaning. HAH, that isn't easy, but I will try. It is just a busy time of year, my son's graduation, and worrying about that, and $$$$$$$$$ as well... Wednesday I go back to pysio with my prescription, and he said if they don't have the means to help, he mentioned as it is a Sports Injury not all therapists are well trained. Then I would go to McGill University Sports Medicine.

Also said Morphine isn't enough. He prescribed a patch to be worn 24/7, and it is replaced after each week, along with celebrex as an anti in flamm.. The kicker..the patches are 200$ a month. THANK GOD for my husband's insurance, they cover at 100%.. BUT they didn't have it on hand, the pharmacist said they must order it, and it should be in on Friday.. Hope so, as I am on NOTHING now, and in pain..

Sorry you asked .. Just a long response.. As for the rest of my results, with my brain malformation reportedly back, that will await the neurosurgeon in July.. I will attempt to fix this, as I need my arm..

Take care everyone.

 

[katrina1122]

Thanks for the responses everyone! After I wrote my question about disability I went home to find a letter from work saying on top of my upcoming 11 day suspension for missed work they are now doing a desk audit to determine if I'm fufilling my duties. I am done. I can't take the stress of it anymore and their negative attitudes towards me. I understand their frustration about my missed work, but the cold heartedness is unforgiveable. We are starting the retirement disability paperwork tonight and hopefully get approved before they find a way to fire me.

I feel like a failure for this, but at the same time I know my health and happiness will be better off for it. Grr fibro!!! We need a cure.

 

[tiggspring]

Thanks for the responses everyone! After I wrote my question about disability I went home to find a letter from work saying on top of my upcoming 11 day suspension for missed work they are now doing a desk audit to determine if I'm fufilling my duties. I am done. I can't take the stress of it anymore and their negative attitudes towards me. I understand their frustration about my missed work, but the cold heartedness is unforgiveable. We are starting the retirement disability paperwork tonight and hopefully get approved before they find a way to fire me.

I feel like a failure for this, but at the same time I know my health and happiness will be better off for it. Grr fibro!!! We need a cure.

Don't feel bad. My Dr put me out when I got a note from my boss that I was in serious danger because I was not managing my time well. The complaint was regarding a day I was in the er and had to cancel my counseling sessions with a troubled client and missed a paperwork deadline. I don't know about you but I don't tend to plan my er visits 7 days in advance

Have you applied for Family medical leave act (FMLA)? If not do so today if you can. It protects you for a certain period of time..I think 6 months and freezes their ability to fire you. My husband is a risk manager and deals with this all the time. He is currently using fmla for his lyme disease and has used it in the past for times when I was more or less bedridden around yr 3 after son was born and yr 3 after DD8 was born. Both times my remission seriously went down at 6months then total wipe out at three years.

Hang in there. We have all been where you are at one time or another

 

[katrina1122]

Don't feel bad. My Dr put me out when I got a note from my boss that I was in serious danger because I was not managing my time well. The complaint was regarding a day I was in the er and had to cancel my counseling sessions with a troubled client and missed a paperwork deadline. I don't know about you but I don't tend to plan my er visits 7 days in advance

Have you applied for Family medical leave act (FMLA)? If not do so today if you can. It protects you for a certain period of time..I think 6 months and freezes their ability to fire you. My husband is a risk manager and deals with this all the time. He is currently using fmla for his lyme disease and has used it in the past for times when I was more or less bedridden around yr 3 after son was born and yr 3 after DD8 was born. Both times my remission seriously went down at 6months then total wipe out at three years.

Hang in there. We have all been where you are at one time or another

I"ve used up my fmla over the last year thanks to 2 bouts of bronchitis and 1 with pneumonia plus my normal bad fibro days. My attorney says it still protects me, but I don't want to risk it.

It's just so frustrating, i want to work, but my body just doesn't agree.

 

[tiggspring]

I"ve used up my fmla over the last year thanks to 2 bouts of bronchitis and 1 with pneumonia plus my normal bad fibro days. My attorney says it still protects me, but I don't want to risk it.

It's just so frustrating, i want to work, but my body just doesn't agree.

I know. SORRY ((((HUGS))))

 

[katrina1122]

Thanks everyone again!

 

[carrie6466]

Hi Ladies, hope everyone is doing well. Everything is just swimming along here, no changes. I go for my last visit with plastic surgeon A on Monday and my first visit with plastic surgeon B on Wed. I'm sure there will be no great amount of progress made at this point before my vacation, so I'll be able to count on one, if not two, surgeries in Sept./Oct.


How was your week?


Welcome Katrina, sorry about your situation. that stinks@!

 

[SeaSpray]

Same thing with my mother. She has pretty much given up, and lives in bed with a diaper

I saw my Dr about my shoulder. Well, I was told the partial tear will heal and probably has begun to do so. The full tear is Significant, as bad as what puts baseball pitchers out of a career. The Ortho said surgery won't work at this point, it would be a 6-8 surgery, and he isn''t confident. SO, now we start 6 weeks of slow therapy, and from there try cortisone, and hoping by then surgery will be possible.

I was like "OH, I didn't know it was THAT bad" .. DR was sooo nice. He stressed, and said I can't stress enough this injury isn't common, isn't easy to repair, and it is a LOOOOONG road. It can be years. So we must take the slow approach, and there is no quick fix. I heard that about 20 times.. Was recommended to me to ease up at home with cooking and cleaning. HAH, that isn't easy, but I will try. It is just a busy time of year, my son's graduation, and worrying about that, and $$$$$$$$$ as well... Wednesday I go back to pysio with my prescription, and he said if they don't have the means to help, he mentioned as it is a Sports Injury not all therapists are well trained. Then I would go to McGill University Sports Medicine.

Also said Morphine isn't enough. He prescribed a patch to be worn 24/7, and it is replaced after each week, along with celebrex as an anti in flamm.. The kicker..the patches are 200$ a month. THANK GOD for my husband's insurance, they cover at 100%.. BUT they didn't have it on hand, the pharmacist said they must order it, and it should be in on Friday.. Hope so, as I am on NOTHING now, and in pain..

Sorry you asked .. Just a long response.. As for the rest of my results, with my brain malformation reportedly back, that will await the neurosurgeon in July.. I will attempt to fix this, as I need my arm..

Take care everyone.

I'm sorry about your mom, mommasita. I can understand why you're worried about her.

How are the pain patch and Celebrex working so far? I'm sorry that you have so much pain. I hope that you get some relief from the medication and physio, even though that will be a slow road.

Thanks for the responses everyone! After I wrote my question about disability I went home to find a letter from work saying on top of my upcoming 11 day suspension for missed work they are now doing a desk audit to determine if I'm fufilling my duties. I am done. I can't take the stress of it anymore and their negative attitudes towards me. I understand their frustration about my missed work, but the cold heartedness is unforgiveable. We are starting the retirement disability paperwork tonight and hopefully get approved before they find a way to fire me.

I feel like a failure for this, but at the same time I know my health and happiness will be better off for it. Grr fibro!!! We need a cure.

You're not a failure! But I understand how you feel because I have a hard time admitting how bad I'm getting. I needed my DH to go to the doctor's office with me, because I knew that I wouldn't stress enough to him the degree of my pain/sleepiness/etc.

There are days when I wish that I was already out of work on disability, and then there are days where I don't want to consider not working (I only work part time). If only I could work for a company who didn't mind me taking days off.

Don't feel bad. My Dr put me out when I got a note from my boss that I was in serious danger because I was not managing my time well. The complaint was regarding a day I was in the er and had to cancel my counseling sessions with a troubled client and missed a paperwork deadline. I don't know about you but I don't tend to plan my er visits 7 days in advance

Have you applied for Family medical leave act (FMLA)? If not do so today if you can. It protects you for a certain period of time..I think 6 months and freezes their ability to fire you. My husband is a risk manager and deals with this all the time. He is currently using fmla for his lyme disease and has used it in the past for times when I was more or less bedridden around yr 3 after son was born and yr 3 after DD8 was born. Both times my remission seriously went down at 6months then total wipe out at three years.

Hang in there. We have all been where you are at one time or another

I looked in to FMLA and apparently you have to be an employee of that company for at least a year. I just started there last November, so I'm only 6 1/2 months in.

Now, once I'm there a year, how do you go about applying for FMLA? And some of you mentioned using up the time allowed; is there a set number of days you can use it for?

I"ve used up my fmla over the last year thanks to 2 bouts of bronchitis and 1 with pneumonia plus my normal bad fibro days. My attorney says it still protects me, but I don't want to risk it.

It's just so frustrating, i want to work, but my body just doesn't agree.

I feel the same exact way. It's not that I love working (I was a SAHM for 18 years and loved it), but we've just finished paying for DS's college and it'd be nice to earn some money to keep for ourselves. LOL

Hi Ladies, hope everyone is doing well. Everything is just swimming along here, no changes. I go for my last visit with plastic surgeon A on Monday and my first visit with plastic surgeon B on Wed. I'm sure there will be no great amount of progress made at this point before my vacation, so I'll be able to count on one, if not two, surgeries in Sept./Oct.

Best wishes to you on your upcoming surgeries. I hope you enjoy your vacation.





As for me, today was my BIL's memorial service. It's been a very stressful few weeks, and especially this past week and today. And tonight my body is letting me know it.

Well, in the words of Scarlett O'Hara: Tomorrow is another day.

(Hoping we will all feel at least a little better tomorrow).

 

[mommasita]

Katrina: I am so sorry. You are not a failure... You never asked for any of this, and you simply ARE doing the best you can. Having said that, I know many of can relate to the work situation. Sending you lots of hugs

Carrie: Such a warrior. Lots of thoughts and prayers.. Glad you have an upcoming trip..

Seaspray: I am once again sorry. That must have be so so difficult I can't imagine the emotions, and pain.. I hope you can relax a little bit. Lots of gentle hugs

Tigg: How are you and DH doing?

I only received my patch today, and put it on after supper. They say the first one may take a bit. Here is hoping by next week I have some relief. Going to pysio Wed with my prescription .. Hoping for the best..

Love and gentle hugs everyone

PS Sorry If I forgot anyone..

 

[rosanab1031]

Glad you had a good trip. I agree on the alchohol. I drank every day on our cruise (something I had never done before) and it helped a lot ..very tasty muscle relaxant . Unfortunatly I drive my kids nearly every day so no drinking for me . How did ridmax work..is it still accurate? The gap didn't use to effect FP but they were liberal with rules even last fall. What is different now?

Thanks!

SURE IS! I don't drink very often either but a drink here and there during our trip helped with my fibro issues.

RideMax worked out okay when we used it for the Magic Kingdom. But as I mentioned I had a guest assistance pass so the times didn't stay very accurate because we walked right onto most things

 

[rosanab1031]

Katrina..

rosanab1031.. Glad you had a good trip. I always am so exhausted after. It takes about a week to catch up..

SeaSpray: My thoughts remain with you and your family.

Hi Tigg, thanks for asking, how are you?

Same thing with my mother. She has pretty much given up, and lives in bed with a diaper

I saw my Dr about my shoulder. Well, I was told the partial tear will heal and probably has begun to do so. The full tear is Significant, as bad as what puts baseball pitchers out of a career. The Ortho said surgery won't work at this point, it would be a 6-8 surgery, and he isn''t confident. SO, now we start 6 weeks of slow therapy, and from there try cortisone, and hoping by then surgery will be possible.

I was like "OH, I didn't know it was THAT bad" .. DR was sooo nice. He stressed, and said I can't stress enough this injury isn't common, isn't easy to repair, and it is a LOOOOONG road. It can be years. So we must take the slow approach, and there is no quick fix. I heard that about 20 times.. Was recommended to me to ease up at home with cooking and cleaning. HAH, that isn't easy, but I will try. It is just a busy time of year, my son's graduation, and worrying about that, and $$$$$$$$$ as well... Wednesday I go back to pysio with my prescription, and he said if they don't have the means to help, he mentioned as it is a Sports Injury not all therapists are well trained. Then I would go to McGill University Sports Medicine.

Also said Morphine isn't enough. He prescribed a patch to be worn 24/7, and it is replaced after each week, along with celebrex as an anti in flamm.. The kicker..the patches are 200$ a month. THANK GOD for my husband's insurance, they cover at 100%.. BUT they didn't have it on hand, the pharmacist said they must order it, and it should be in on Friday.. Hope so, as I am on NOTHING now, and in pain..

Sorry you asked .. Just a long response.. As for the rest of my results, with my brain malformation reportedly back, that will await the neurosurgeon in July.. I will attempt to fix this, as I need my arm..

Take care everyone.

Thanks Momma! Yeah I am still in recovery mode. Been sleeping most of the day away. Lol. My allergies also are pretty bad again since coming back. I think the humidity, as gross as it was, really helped my allergies. Or maybe I am just allergic to California. Lol

 

[rosanab1031]

Thanks for the responses everyone! After I wrote my question about disability I went home to find a letter from work saying on top of my upcoming 11 day suspension for missed work they are now doing a desk audit to determine if I'm fufilling my duties. I am done. I can't take the stress of it anymore and their negative attitudes towards me. I understand their frustration about my missed work, but the cold heartedness is unforgiveable. We are starting the retirement disability paperwork tonight and hopefully get approved before they find a way to fire me.

I feel like a failure for this, but at the same time I know my health and happiness will be better off for it. Grr fibro!!! We need a cure.

No reason to feel like a failure! You gave it your all for as long as you could. But sometimes our bodies will only let us do so much. People still don't have a real understanding of what Fibromyalgia is and they seem to just think we are lazy and irresponsible. If only they understood what it takes just to get out of bed in the morning! UGH! Frusturating I know. Hopefully someday there will be more understanding and compassion for what we are going through.

I'm going to be looking into a 504 Plan at some point. It does offer some protection but I definitely need to do more research on them.

 

[katrina1122]

I know that i'm not a failure, I tried really I did. I just hate that fibro is so ignored and unknown. We need people working towards a cure.

I don't turn 40 until Nov. I shouldn't have to retire, but I'm being forced into it. It's just so frustrating as you all know. Such is the life of a fibromite.

 

[SeaSpray]

I know that i'm not a failure, I tried really I did. I just hate that fibro is so ignored and unknown. We need people working towards a cure.

I don't turn 40 until Nov. I shouldn't have to retire, but I'm being forced into it. It's just so frustrating as you all know. Such is the life of a fibromite.

So true!




Well, I went in to work today and found out that my schedul change request has been approved! Starting this week I will no longer be working the evening shift. I've been working 6pm - midnight, but starting tomorrow I will be working 9am - 2pm. So, this is one less hour per day, PLUS I will be home in the afternoon and evening, which DH is extremely happy about. I am too. I always get up early in the morning with DH anyway, so getting to work for 9am will be a piece of cake (I hope! LOL).

A LOT of people work at my company during the day, and the last time that I went in for a day shift, I had to park a million miles away; so believe when I say that my Handicap Parking placard cannot arrive too soon, now that I'll be going there every day from now on! Oh, I still have Thursdays off, and will still be working Sunday afternoons, which I honestly don't mind.

*whew* I hope this going to be a better schedule for me.



I hope everyone is feeling ok today.