Fibro friends check in

[karynnix]

My pain hits me about every 8-10 days. Today started out well, but as the day has gone on, and it has gotten warmer, the pain has set in. Most of my pain is felt in my lower back. The exhaustion is what is so bad! I can deal with the pain.

I want to go to work so badly, but the thought of having to push through everyday when I feel so badly turns me off from it. What information do you need to start looking into getting disability? I don't want to take advantage of the government, but I just don't see any way that I would be able to work full-time...or even part-time for that matter!

 

[Smileybug]

Oh my goodness...I could just cry. I'm so happy I found ya'll. I have had fibro for about 6 years. I'm having a pretty difficult time right now.

 

[TLSnell1981]

Oh my goodness...I could just cry. I'm so happy I found ya'll. I have had fibro for about 6 years. I'm having a pretty difficult time right now.

No one understands.......unless they have walked in our shoes. (I sure do miss my stilettos )

 

[binny]

Oh my goodness...I could just cry. I'm so happy I found ya'll. I have had fibro for about 6 years. I'm having a pretty difficult time right now.

welcome <----- pretend that is a really gentle hug.

 

[disneymarie]

the hot tub really does seem to help doesnt it?

I hate going out there in the winter though the rest is too cold LOL.


I am actually feeling a LOT better today. I am only achey and a little tired. Huge improvement over the last few days!


How is everyone doing today?



PS: Please join the facebook group if you are on FB.

I can not take the extrem cold and being in the Pocono area, the winters are long, cold and icy.
I have our hot tub in the garage and ventelate. This has worked for me, although the men are concerned of moisture in there. so the summer I do not run and the rest of the year I make sure the over head garage door is open and the fan on. That way I am out of the weather. I would like an enclosed porch some time when money is available.
But it is the best thing to help,
dianne

 

[mommasita]

My sad experience..... I was diagnosed and put on meds about a year ago and started doing great! I was able to tolerate long drives again which since we moved from TX to FL was important. Then about June my celexea (sp?) started making me sleepy so I quit. I still felt fine so I thought it was no big deal. I planned a trip to Mexico for this past Sept for a dolphin training workshop. I was excited and thrilled, looked forward to this for 3 months! The big day came, I got on the plane and had a major anxiety attack. Forced myself to stay on as I figured once I got there I would be fine. Wrong! The anxiety was so strong it brought on the extreme episode. My abdomen is where it hits when I have an episode.

Anyway I was in extreme pain and even had a Dr come to my hotel room and give me pain killers. This was on Sun afternoon. Monday came and was still in pain and when the pain would leave, nausea would come in. I went through almost an entire bottle of pepto pills. Anyway long story short I had to leave to come home on Tues morning. As soon as I was on a plane, my stress left and I was fine. The homesickness was causing major stress which caused me to miss my entire trip!! I cried and fell into a deep depression once I was home. Anyway I have made an appt with a Dr that specializes in Fibro so I hope that she can put me on something to help combat the pain, fatigue, anxiety, and depression. If your still reading, thanks. I needed to vent and get that off my chest. Only my husband understands so my friends and co-workers can't figure out why the meds didn't work so that I could stay.

I am so sorry to hear that

I FIRMLY believe that a great Dr. is not the answer, but it is a definite plus for me. I saw 2 prior to the one I have now, and felt like my questions were bothersome to them. I (thank God) got this tremendous referral to the best Rheumy in our city, as he was no longer accepting new patients, but he did make an exception.

He is knowledgeable, patient, and although sometimes the wait times are VERY long, I know that I have his full undivided attention.

I do have one of my best friends and we do help each other. It is depressing as Binny stated, but we are trying to go at it in a different light. One day at a time type of thing. As one day can be wonderful (or even months or weeks for me) and then BAM a flare hits and knows you on your butt.

I have a great group for Sjogren's as this is an every day thing, which I LOVE being a part of, and it is a great bunch of positive people. I think staying positive (most days, not all ) really helps me a lot.

Again, I send out

 

[disneymarie]

My pain hits me about every 8-10 days. Today started out well, but as the day has gone on, and it has gotten warmer, the pain has set in. Most of my pain is felt in my lower back. The exhaustion is what is so bad! I can deal with the pain.

I want to go to work so badly, but the thought of having to push through everyday when I feel so badly turns me off from it. What information do you need to start looking into getting disability? I don't want to take advantage of the government, but I just don't see any way that I would be able to work full-time...or even part-time for that matter!

There are two forums I found a lot of help with disability filing www.neurotalk.com and go to the social security forum, also www.braintalk.com.

It goes by so many variables, but one thing is having enough work quarters, not being able to work for 6 months, not expected to improve in a year.
Go to www.ssa.gov to get a lot of correct information and an application to file. It never hurts to start the application process.

Include all diagx including any other chronic pain diagx, injuries, surgeries, carpal tunnel, heart, arthritic, asthma,cardia, etc as they would apply to your situation. the key in filling in the form is you may be able to do some things during the day, not everyday all day...youo can not do things as youo did before, You dress more simply, cook quick meals, no longer socialize, the medications and fatigue impede on being a reliable and productive worker.

There is SSI which is a disability insurance that is nominal and based on spouses income. SSDI is based on your hughest quarters of the previous ten years I believe.
A lot more information can be read and found on the forums.
dianne

 

[Smileybug]

Thank you for the warm welcome and gentle hugs.

 

[Shugardrawers]

My biggest dilemna with working has been deciding where the line is between working part time with accomadations vs. admitting I've fought the good fight and it's time to let go. You have a string of good days and think "yeah, I can do this" Then you get knocked on your hiney by a few weeks of pain and fatigue you couldn't begin to explain. If your employer doesn't "get it" you could well find yourself unemployed and statistics say it's likely not the first time.



I want to have a purpose each day but I don't want to push my body beyond it's limits either. I'm really sick of hearing phrases like "If you WANTED to work" If I didn't I wouldn't be trying I just don't know how to know inside myself that it's time to cal it a day

 

[karynnix]

My biggest dilemna with working has been deciding where the line is between working part time with accomadations vs. admitting I've fought the good fight and it's time to let go. You have a string of good days and think "yeah, I can do this" Then you get knocked on your hiney by a few weeks of pain and fatigue you couldn't begin to explain. If your employer doesn't "get it" you could well find yourself unemployed and statistics say it's likely not the first time.



I want to have a purpose each day but I don't want to push my body beyond it's limits either. I'm really sick of hearing phrases like "If you WANTED to work" If I didn't I wouldn't be trying I just don't know how to know inside myself that it's time to cal it a day

Exactly!! I need to feel useful, but right now, I just don't. I can't do anything to help pay the bills. I used to think that I was doing great things by staying home and keeping the house clean. Now, I can't even do that most days. At least 2 or 3 days a week, I spend the day sleeping. I feel guilty doing that because my husband has to go to work all day and my kids are at school, and I am laying around. I can't shake those guilty feelings.

 

[TLSnell1981]

Exactly!! I need to feel useful, but right now, I just don't. I can't do anything to help pay the bills. I used to think that I was doing great things by staying home and keeping the house clean. Now, I can't even do that most days. At least 2 or 3 days a week, I spend the day sleeping. I feel guilty doing that because my husband has to go to work all day and my kids are at school, and I am laying around. I can't shake those guilty feelings.

I'm over the guilt feelings. Now, I just feel sorry for myself.**tongue in cheek**

 

[disneymarie]

I went back to chool and got my BA, part time...Then I got a job, $12.50 an hour for three days 5 hours. I was sleeping to catchup all the time. So far behind on things to do at home, because my job was extremly rewarding.
I have not worked now since June and am still catching up.

I understand the need to be productive and our limitations. I did join a Photography club once a month and the local chamber of commerance and on a committe rec board.

I am donating some time to an afterschool care program, not more scool work, but for kids of 6th through 8th grade the latchkey kids that are at risk.
So I can do a lot of research from home and attend meetings as set.

I did miss one a week ago Monday, the weekend was hard on me and I lay down until the noon meeting. I ended up sleeping until 1:30 and missed it.
I am drained, hurt, push myself, but realize working is difficult.
I miss my job, the kiddo clients, and even being out of the home productive. It was a trade off though.
Find a club, or seasonal extension class of some kind. i do online photogrphy free classes,
I took a Publisher to learn how to do newsletters, and also had photos in the yearly exhibit at the library. A few years after my injury I did geneology and made a book for the family. Lots of pictures and family trees. I have 900 family members in it.

I got software from ancestry.com and lots of family obituaries to start me off. Then I subscribed to online census I could not find free, There are many free resources to start with.
Limit time on the computer, sit ergonomically, take the Advil's. I use my tens unit, or thermo heat. Ice on the neck for cervogenic migrains. Electric throw blanket to keep me warm in the winter, and ceiling fans low speed in the summer.
TONS of Biofreeze, or lavendar Cryogel from Ebay.
dianne

We can be productive in our own way.

 

[binny]

how did you take a free online photography class?

I would love to do that!


I work from home which is really slow right now. It makes it nice though to be able to research. My main client is a corporation and while the owner lives about 2 miles from me I have never met her. We do everything online or over the phone. Its great to have the flexibility like that. The only problem is being a TA can be really stressful. I had clients taht dodged Rita by about 8 hours. It bumped their cruise a day out. All well and good except they were getting married in Grand Cayman. So I had to replan the wedding while not being in contact with the bride. The hurricane screwed up their ship to shore so there was no contact at all.
Talk about setting off the stress alarms. I never want to go through that again!

 

[Smileybug]

I just wanted to stop in and say "Good Morning"!! I hope you all find plenty of smiles today. I would like to share with you what helps me. I have "episodes" (that's what I call them.) of pain and exhaustion. You know...that pain that can be so bad that it hurts to breathe. And the exhaustion so bad that you have to focus to make sure you breathe. I haven't found a medication that helps... yet. (except Lasix. It is a diuretic.) I retain fluid. And that does seem to make the pain worse.

My biggest help is... I have found that if I stay as positive as possible it just keeps my spirits up and that in turn makes me feel better. God and I have lots of chats. I have also found that walking is a big help. When you go shopping or run errands. Park out in the back 40. Make yourself walk. I know these things sound really simple. But out of all the things I have tried these two things seem to "help" me the most. They also help to alleviate stress. And we all know what stress does. I just wanted to give you all something else to think about. I hope I haven't offended any of you in anyway.

 

[Trish Bessette]

Hello all my fibro friends

I'm having a very hard time and always do starting in Sept/Oct and lasts until March. I live in Vermont and the temps are in the 30's at night. I work full time, run every night to DD's soccer games, president of the PTO, you name it. I'm trying to pace myself but I'm such a go getter this is hard.

This is my 7th year with it and every year it gets worse. I'm afraid of how I will be when I'm 45, 50, etc. (I'm 41)

I don't take any meds. I get as much sleep as I can. I usually feel pretty good Monday through Wednesday each week but by Thursday and Friday I'm hurting from my busy week. The weekend rejuiviante me

So let's all keep in touch since we all know what each other is going through.

 

[disney kid at heart]

My biggest dilemna with working has been deciding where the line is between working part time with accomadations vs. admitting I've fought the good fight and it's time to let go. You have a string of good days and think "yeah, I can do this" Then you get knocked on your hiney by a few weeks of pain and fatigue you couldn't begin to explain. If your employer doesn't "get it" you could well find yourself unemployed and statistics say it's likely not the first time.



I want to have a purpose each day but I don't want to push my body beyond it's limits either. I'm really sick of hearing phrases like "If you WANTED to work" If I didn't I wouldn't be trying I just don't know how to know inside myself that it's time to cal it a day

Welcome Sug! It took me 10Yrs to face the fact that I was not going to ever get back my old self. I went on SS disability in 99, but always thought I would go back to my hospital job. I still look at the jobs in the paper. I would walk so fast people couln't keep up with me and now it is a cane, walker or scooter. I wish I could still work but jobs don't allow the potty breaks and sick days that we need when we are having problems. My bad days out number my good days. It is a hard choice when you have to give up your job because it takes away that independence and control. gentle

 

[disney kid at heart]

Good morning all!!! gentle to all.

 

[binny]

morning ladies,

I am off to church today. I have spent the better part o fthis week at home in my sweats. This morning I was determined to get up and put my make up and real clothes on lol.

I am achey today but so far so good. I have to go take inventory on what we have for trunk or treat. This is my last year being in charge of it and we have scaled way back, partly due to my fibro and partly due to lack of volunteers.

I have bunco tonight too. Yippiiee lol

Have a great day everyone.

 

[TLSnell1981]

Hello all my fibro friends

I'm having a very hard time and always do starting in Sept/Oct and lasts until March. I live in Vermont and the temps are in the 30's at night. I work full time, run every night to DD's soccer games, president of the PTO, you name it. I'm trying to pace myself but I'm such a go getter this is hard.

This is my 7th year with it and every year it gets worse. I'm afraid of how I will be when I'm 45, 50, etc. (I'm 41)

I don't take any meds. I get as much sleep as I can. I usually feel pretty good Monday through Wednesday each week but by Thursday and Friday I'm hurting from my busy week. The weekend rejuiviante me

So let's all keep in touch since we all know what each other is going through.

Good to hear from you.

 

[mommasita]

HI everyone

Hope everyone is doing well <-------- Gentle hugs

I just got in from supper out. I told my husband I needed someone to serve ME, and not the other way around. Overate, but it was delicious Italian..

I am cooking a lovely cold, and my throat feels like raw hamburger. But I MUST get better soon. My son as one more regular season football game Saturday and then the playoffs.

I am going to take some nice sleeping aids tonight, and hopefully feel better tomorrow. One more day of work left and a long weekend here. Canadian Thanksgiving.