Fibromyalgia Thread

[SeaSpray]

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.

Hi rosanab,

What is a 504 plan? Is it similar to FMLA??

 

[SeaSpray]

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

I hope the patch kicks in soon so you can get some relief.

 

[tiggspring]

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.

So glad you got a better schedule! Hopefully its as helpful as you expect it to be.

I've been up/down. Weather really impacting my energy levels one hr I'm dragging next minute feeling much better. My back locked up for several days last week for no apparent reason. I was actually feeling a bit better but couldn't move . Took flexerill for several nights that knocked me out a bit but did fix my back and jaw pain I had been dealing w for nearly 3 months improved greatly too must have been some form of tmj. Just dragging myself from one kids activity to another until school got out last Tuesday. Now trying to figure out a summer routine that will get me ahead since I shouldn't have a post vacation crash as we don't go on a vaca this year. DD8 is going to dance nationals in two weeks and DS/dh have big week trip to Gettysburg with scouts so DH has no more days left and our cash is limited too. Hoping to take another cruise next june since prices haven't gone up much since opening or maybe 2015.

Sending pain free vibes and pixie dust to all!

 

[rosanab1031]

Hi rosanab,

What is a 504 plan? Is it similar to FMLA??

Hi SeaSpray!

A 504 plan is a legal document that was created for employees with disabilities. It states agreed upon accommodations that your employer will make for you as a person with disabilities.

As a public school employee I have seen them mostly written for students who do not qualify for IEPs. This was not it's original purpose.

Obviously it won't work in every situation, and like I said I need to do a little more research on it But could be a good starting point for some.

 

[katrina1122]

Hi SeaSpray!

A 504 plan is a legal document that was created for employees with disabilities. It states agreed upon accommodations that your employer will make for you as a person with disabilities.

As a public school employee I have seen them mostly written for students who do not qualify for IEPs. This was not it's original purpose.

Obviously it won't work in every situation, and like I said I need to do a little more research on it But could be a good starting point for some.

I work for a county gov't. My form was a "reasonable accommodation request". Doctor's had to list reasons for accomodations...ie time off due to pain etc. It was flat out denied, despite our lawyer stepping in several times on it.

 

[katrina1122]

Welp, I did it tonight. I applied for pension disability retirement from my gov't job. Next step is to get a least 2 dr forms stating i'm fully disabled. This should not be a problem I hope. I also know one who will write supporting evidence for my mental health issues. Fingers crossed.

We put in for an Aug 1, 2013 retirement date. They say it can take up to 8 months for approval, but I'm afraid they'll fire me before then. So here goes nothing.

As a result I'm stressed out and my body hurts so much I can't sleep.

 

[rosanab1031]

I work for a county gov't. My form was a "reasonable accommodation request". Doctor's had to list reasons for accomodations...ie time off due to pain etc. It was flat out denied, despite our lawyer stepping in several times on it.

Wow! That's BS!!! I'm sorry

 

[tiggspring]

Welp, I did it tonight. I applied for pension disability retirement from my gov't job. Next step is to get a least 2 dr forms stating i'm fully disabled. This should not be a problem I hope. I also know one who will write supporting evidence for my mental health issues. Fingers crossed.

We put in for an Aug 1, 2013 retirement date. They say it can take up to 8 months for approval, but I'm afraid they'll fire me before then. So here goes nothing.

As a result I'm stressed out and my body hurts so much I can't sleep.

They may try but you can remind them if they do they will be looking at a discrimination lawsuit. You would win and they would have to pay legal fees on top of everything else. They count on people not knowing their rights and giving up. Remind them and you should be fine. Sucks though. Who needs all this stress? You should see if you qualify for ssi. You can work a few hrs and collect and you can get a reduced amount if you have private disability insurance. I don't know specifics since I didn't have insurance. I would contact and ssi lawyer for next step.

Hang in there..For me the transition from worker to disabled was the worst. The psychology of it all is tough. I identified myself through my work and had to give up my dreams of furthering my education too People think we all want to be out but most of us are type A and need to work to feel whole. Add to it the two years without income while waiting, needing to go to ssi court and get my congressman involved and it seriously stunk. Now at least FMS is recognized as a disability, it wasn't back then.

(((Hugs)))) from pa

 

[SeaSpray]

So glad you got a better schedule! Hopefully its as helpful as you expect it to be.

I've been up/down. Weather really impacting my energy levels one hr I'm dragging next minute feeling much better. My back locked up for several days last week for no apparent reason. I was actually feeling a bit better but couldn't move . Took flexerill for several nights that knocked me out a bit but did fix my back and jaw pain I had been dealing w for nearly 3 months improved greatly too must have been some form of tmj. Just dragging myself from one kids activity to another until school got out last Tuesday. Now trying to figure out a summer routine that will get me ahead since I shouldn't have a post vacation crash as we don't go on a vaca this year. DD8 is going to dance nationals in two weeks and DS/dh have big week trip to Gettysburg with scouts so DH has no more days left and our cash is limited too. Hoping to take another cruise next june since prices haven't gone up much since opening or maybe 2015.

Sending pain free vibes and pixie dust to all!

Thank, Bonnie. I ended up only taking the Flexeril for a couple of nights because I couldn't stand the hang-over feeling in the mornings. Blah. The doctor gaved me Flexeril in place of Soma, and I have never had a hang-over from that, so if I need to take something I'll go back to Soma. Coincidently, I started on Soma because of jaw pain, too. I'm glad that your back pain is better this week

And you know, I'm kind of glad that we don't have a big vacation for this year for the exact reason you mentioned. I feel like I'm still trying to get myself (pain, fatigue, etc) leveled off before doing anything that will cause a crash!

Hi SeaSpray!

A 504 plan is a legal document that was created for employees with disabilities. It states agreed upon accommodations that your employer will make for you as a person with disabilities.

As a public school employee I have seen them mostly written for students who do not qualify for IEPs. This was not it's original purpose.

Obviously it won't work in every situation, and like I said I need to do a little more research on it But could be a good starting point for some.

Thanks for the explaination

I work for a county gov't. My form was a "reasonable accommodation request". Doctor's had to list reasons for accomodations...ie time off due to pain etc. It was flat out denied, despite our lawyer stepping in several times on it.

Welp, I did it tonight. I applied for pension disability retirement from my gov't job. Next step is to get a least 2 dr forms stating i'm fully disabled. This should not be a problem I hope. I also know one who will write supporting evidence for my mental health issues. Fingers crossed.

We put in for an Aug 1, 2013 retirement date. They say it can take up to 8 months for approval, but I'm afraid they'll fire me before then. So here goes nothing.

As a result I'm stressed out and my body hurts so much I can't sleep.

I'm sorry that you're so stressed I hope that you get approval sooner rather than later.

They may try but you can remind them if they do they will be looking at a discrimination lawsuit. You would win and they would have to pay legal fees on top of everything else. They count on people not knowing their rights and giving up. Remind them and you should be fine. Sucks though. Who needs all this stress? You should see if you qualify for ssi. You can work a few hrs and collect and you can get a reduced amount if you have private disability insurance. I don't know specifics since I didn't have insurance. I would contact and ssi lawyer for next step.

Hang in there..For me the transition from worker to disabled was the worst. The psychology of it all is tough. I identified myself through my work and had to give up my dreams of furthering my education too People think we all want to be out but most of us are type A and need to work to feel whole. Add to it the two years without income while waiting, needing to go to ssi court and get my congressman involved and it seriously stunk. Now at least FMS is recognized as a disability, it wasn't back then.

(((Hugs)))) from pa

It's funny that you say that because even though I planned for and chose to be a SAHM for 18 years, now that I've been working for the past 7 years, I don't like feeling physically as if I don't have a choice.

Currently I'm working 25 hours per week, and now that I'm on day shift I hope that my quality of life will improve too. So far I'm very happy about my schedule change.

 

[katrina1122]

They may try but you can remind them if they do they will be looking at a discrimination lawsuit. You would win and they would have to pay legal fees on top of everything else. They count on people not knowing their rights and giving up. Remind them and you should be fine. Sucks though. Who needs all this stress? You should see if you qualify for ssi. You can work a few hrs and collect and you can get a reduced amount if you have private disability insurance. I don't know specifics since I didn't have insurance. I would contact and ssi lawyer for next step.

Hang in there..For me the transition from worker to disabled was the worst. The psychology of it all is tough. I identified myself through my work and had to give up my dreams of furthering my education too People think we all want to be out but most of us are type A and need to work to feel whole. Add to it the two years without income while waiting, needing to go to ssi court and get my congressman involved and it seriously stunk. Now at least FMS is recognized as a disability, it wasn't back then.

(((Hugs)))) from pa

Thanks for the kind words. My lawyer suggested against ssi as I have pension with a state gov't from my local govt job so I'm eligible for disability retirement thru that which includes continued coverage of my health insurance and I can work another job without limitation on pay. If I go over what I'm making now they just reduce the disability retirement pay to match it. I won't go back to full time, but I'll have the option. I just have to get them to approve it first.

 

[tiggspring]

Thanks for the kind words. My lawyer suggested against ssi as I have pension with a state gov't from my local govt job so I'm eligible for disability retirement thru that which includes continued coverage of my health insurance and I can work another job without limitation on pay. If I go over what I'm making now they just reduce the disability retirement pay to match it. I won't go back to full time, but I'll have the option. I just have to get them to approve it first.

Wow sounds like a fantastic benefit! Definitely better than ssi. Still no matter what the benefit companies/gov inclination is to deny at least a couple of times. Denials of benefits are a easy way to save money because so many never go through appeals process . Its purely a numbers game. Try not to take it personaly if they set up roadblocks...I about went insane with the ssi process. The judge was so mad once I got to court he told the other side to sit down and be quiet because what they were suggesting was so ridiculous. It was nice to hear but getting there almost killed me. Try not to stress yourself during the process.

 

[carrie6466]

My daughter will be 10 end of this month. I haven't worked since the day we found out I was pregnant. When I was getting ready to get it all back together and find something (cause I really need Disney!) This all started happening to me.

Now I couldn't get a job, because I can't stay awake 8 hours at a time. I can't get disability, because most of my jobs were 1099 and I had no retirement disability. No SSI. Nada

 

[SeaSpray]

My daughter will be 10 end of this month. I haven't worked since the day we found out I was pregnant. When I was getting ready to get it all back together and find something (cause I really need Disney!) This all started happening to me.

Now I couldn't get a job, because I can't stay awake 8 hours at a time. I can't get disability, because most of my jobs were 1099 and I had no retirement disability. No SSI. Nada

Oh that stinks. . I remember when i went back to work it was a few years before i was eligible for disability too. There is no protection for stay at home parents even if we did work for several years before staying home.

Last year after being on unemployment for 10 months i wasnt sure that id be able to learn a new job for the same reason you mentioned and also because of not being able to concentrate. I still dont know how i made it through the two weeks of training but somehow i did. 7 months later and ive already been given a "verbal' warning for my absences. :/

 

[katrina1122]

Oh the dreaded absence warnings.

I get employers not liking that we are out, but it's not like I'm staying home and living it up. I'm home because I'm in pain, my head hurts, I'm sick with something yet again. I just wish fibro was more accepted so that our requests don't seem so outrageous to them.

 

[carrie6466]

Oh that stinks. . I remember when i went back to work it was a few years before i was eligible for disability too. There is no protection for stay at home parents even if we did work for several years before staying home.

Last year after being on unemployment for 10 months i wasnt sure that id be able to learn a new job for the same reason you mentioned and also because of not being able to concentrate. I still dont know how i made it through the two weeks of training but somehow i did. 7 months later and ive already been given a "verbal' warning for my absences. :/

That totally stinks. I don't even think I could do it right now anyway. Just talked to the oncologist because I'm having some side effects from the Tamoxifen (for the breast cancer) so she told me stop taking it immediately and call the gyno and tell him I need an ultrasound. I called today and they can get me in tomorrow. For some reason that really scared me. Probably because they are usually not able to get you in for a week.

I counted yesterday. Since I had surgery on March 28th, I have had 37 doctor visits. Some of them have been 2 or 3 different ones in a day. I'm ready to just say enough! already.

 

[SeaSpray]

That totally stinks. I don't even think I could do it right now anyway. Just talked to the oncologist because I'm having some side effects from the Tamoxifen (for the breast cancer) so she told me stop taking it immediately and call the gyno and tell him I need an ultrasound. I called today and they can get me in tomorrow. For some reason that really scared me. Probably because they are usually not able to get you in for a week.

I counted yesterday. Since I had surgery on March 28th, I have had 37 doctor visits. Some of them have been 2 or 3 different ones in a day. I'm ready to just say enough! already.

carrie: I hope all goes well with your ultrasound. You've been through so much in the last few months. You must be exhausted just by all of the doctor appts. let alone the surgery itself.

 

[carrie6466]

Well, I went to the doctor today and the result is that I get to go for an ultrasound and another biopsy on Saturday morning.


Only 61 days until WDW! So glad that I have something to look forward to.

 

[mommasita]

Carrie:.. Thinking great thoughts and giant prayers for Saturday

I haven't checked in a while.. I read everything, but my brain How is everyone?

I haven't checked in honestly because I feel like Debbie Downer. I went shopping last week with my Son for his grad. Tried on a shoe, and lost my balance, went tumbling on my torn rotator cuff side. Fell RIGHT on it.. I managed to finish what we needed to do, and waited a few days, and went for Xrays yesterday. Not sure if I did anything worse

My Mother is still in the hospital, going on 6 weeks. I visit rarely, and my Dr I see weekly for talks has helped in not making me feel too guilty. I see her once or twice a week.. Right now I must focus on my son and making him feel special on Tuesday...

My husband has the second week of July off and we are looking into doing something? what who knows..LOL. Working for the airlines has good points, and majorly bad ones. No planning in advance, seeing what is available, and booking 24hrs prior.. LOL. But it would be nice, and my Dr thinks I need it in a bad way..

Giant gently hugs

 

[SeaSpray]

Well, I went to the doctor today and the result is that I get to go for an ultrasound and another biopsy on Saturday morning.


Only 61 days until WDW! So glad that I have something to look forward to.

Sending good thoughts for you on Saturday.

Carrie:.. Thinking great thoughts and giant prayers for Saturday

I haven't checked in a while.. I read everything, but my brain How is everyone?

I haven't checked in honestly because I feel like Debbie Downer. I went shopping last week with my Son for his grad. Tried on a shoe, and lost my balance, went tumbling on my torn rotator cuff side. Fell RIGHT on it.. I managed to finish what we needed to do, and waited a few days, and went for Xrays yesterday. Not sure if I did anything worse

My Mother is still in the hospital, going on 6 weeks. I visit rarely, and my Dr I see weekly for talks has helped in not making me feel too guilty. I see her once or twice a week.. Right now I must focus on my son and making him feel special on Tuesday...

My husband has the second week of July off and we are looking into doing something? what who knows..LOL. Working for the airlines has good points, and majorly bad ones. No planning in advance, seeing what is available, and booking 24hrs prior.. LOL. But it would be nice, and my Dr thinks I need it in a bad way..

Giant gently hugs

I'm sorry that you fell... *OUCH* I wonder if bad balance is related to fibromyalgia because I'm always walking and losing balance. I always think that my neighbors must think I'm drunk when I walk out to the mailbox. LOL

I don't think that you should feel guilty about not visiting the hospital more often. It would be bad for your stress levels and would directly negatively effect your health. I'm glad that you're seeing your doctor and that he's supporting you in this.

I hope that you get to do something fun in July when your DH is on vacation.





Well I've been feeling pretty good lately... until today. I feel like I've been hit by a truck. ALL of my joints are killing me. I hope this is only temporary. I thought that the Adderall was helping my fatigue and focus, but today I'm very tired. And my throat hurts. I guess my focus is OK since I'm able to be here reading and replying. So that's a plus. lol

Today is my day off so I did a quick food shopping and by the time I got back to my car I was having spasms in my lower back. Seriously?! Blah... I'll live. I hate to complain, so it's good to be able to come here and sound like a baby. lol

 

[brighteyes]

OH MY GOSH I was just typing such a long, important post and hit a wrong key and kaboom GONE~

Anyways, I have some news that I would like to share with you all that I hope might be of help to some of you. I am hoping it does. As you all know, I have had issues with multiple food allergies causing chronic inflamed hives since Christmas.

These did not go away until I eliminated dairy, wheat, gluten, soy, eggs, and grains from my diet. It was an elimination diet to see what I was reacting to. That was great except when I cheated a little here and there. Then I started eating like this all the time, eliminating processed foods as much as possible. In other words, only one type of salad dressing that fit the above criteria, whole pure maple syrup. If it was processed it had to have less than 5 ingredients in it. Whole, fresh foods, fresh fruit and vegetables. I stopped cooking with Olive Oil and started cooking with coconut oil. I saw an improvement in my hives (they stopped, except for the rare few that I had here and there). I also started supplementing my diet with flax seed and chia seeds and almond butter, and started eating apples as they contain quercitin which helps my hives.

Then I started really eating well. But found I started breaking out again. I started reacting to things like bananas when I started adding them back in and gluten free oats, strawberries, spinach, nutrtional yeast. What I am saying is although I am eating 90% better that what i was (junk food take out all the time - I do still eat chips and french fries sometimes) I was reacting to whole healthy foods that I did not have a problem with before.

I also had to go off all of my meds, no multi-vitamin, no fibro meds, no advil. The only thing I take now is a B6 supplement that is organic and contains no gluten. I have to say considering I am off my fibro meds, my fibro is certainly not any worse, except when I have my period.

My digestion is soo much better, no diarrhea (sorry if that's tmi), no heartburn, acid reflux, no loss of voice cause acid reflux is so bad, no more sinus congestion, no bloating, no gas, no water retention. AND I am losing weight! Slowly but surerly. Not even extra weight when I have my period. I do tend to get migraines when I have my period but so far, I am still medication free and get through it and it's getting better. I feel so much better in so many ways. Still do not have a lot of energy though due to lack of sleep but most of that is due to my son lately and my kitty and noisy neighbours I feel about 85 % better but not 100% yet.

So I went to the healthfood store trying to find a vegan protein supplement because I am trying to find a banana free strawberry free dairy free smoothie that I like but is filling for breakfast. This is the trickiest meal for me, since most of my choices for breakfast it would seem I am intolerant to. So while helping me I started discussing how every day I seem to have new foods that are giving me hives again and am afraid that my list of foods will diminish so that I won't be able to eat even healthy foods and how I miss my bananas, etc. He started describing intestine Permeability (sp?) I said do you mean "leaky gut?" I was excited I knew what he was talking about but scared cause when I briefly read about that, I thought OMGosh I am glad I don't have that, it sounds gross" LOL He said eliminate some foods, potatoes have to go still I think and drink bone broth. THe gelatin from the bone or the bone marrow is very healing to our intestines.

I started researching this more and more and messaging people who were going through the same things. What i found has been very interesting: It would seem that most people with auto-immune issues such as chrohn's, fibro, colitis, also have digestion issues such as heartburn, ibs, etc.

It would seem that ALL of these symtoms apply to me, and that they all started back at least 8 - 10 years ago after I moved here and started eating way more grains, and whole grain whole wheat at that - nothing white, all brown bread, pasta, wraps, and lots of dairy in an attempt to be healthy. That is around the time that all my sypmptoms began and steadily got worse. I truly believe that all of these issues, are due to years of undiagnosed food intolerances to dairy and wheat which then inflammed my intestines and whole body, When the body experiences so much inflammation, the intestine walls become permeable and undigested food then leaks into the system which your body sees as an invader and attacks it. Therefore, resulting in foods that you are not intolerant to giving you a reaction.

So I could keep eliminating foods until the cows come home and won't get any closer to feeling better. And the foods I can't eat without an immune reaction (hives) will continue to increase/and/or the severity of my intolerance will increase. So the key is to HEAL my tummy and then I will be able to tolerate foods more easily. I will however still be gluten free and probably grain free and diary free, but if I want to have the odd piece of cheese I want to be able to without causing pain and hives.

So there are several protocols I have discovered about when trying to heal a leaky gut. Read about them here....

http://blog.healclick.com/evolving-paleo-diet-for-leaky-gut-syndrome/

There are several modifications to these for those with specific conditions like chrohn`s, and autoimmune conditions.

But I am finding this all very interesting and the steps I have taken I have seen an improvement in less than 3 months.

Sorry for the book but I hope this can help someone At the very least, give someone some reading to do to make a decision on your own. All our systems are different so these things, If tried would have to be tweaked according to us, however I believe this is onto something.

Love you all, keep well.