Fibromyalgia Thread

[EDuke98080]

Hi All!

Just wanted to check in. How is everyone? I started to play tennis again after 2 years. I am starting by playing 10 to 15 minutes just hitting the ball at my sons lesson. I've been twice now and then only things that hurt were my shoulder and knees. I was encouraged by only having those pains! Change of season is giving me headaches tho... I just keep taking tylenol and it seems to be working ok.

Feel good everyone!

~Erika

 

[brighteyes]

Can't sleep. Hope this isn't a bad sign.

Tigg, Don't worry I am right there along with you. I have not been sleeping on a proper time schedule and slept in AGAIN this morning for class.

I have been sleeping in alot lately and that is not like me. I am just sooo exhausted lately.

Hope you feel better soon and get rested. I am going to try to go to sleep now.

 

[tiggspring]

WOW its been awhile since any of us have posted. Ive been having great difficulty with my computer and I hate to make long posting on my phone because my spelling and grammar stink that way and I look like an idiot or get people confused.. Its been taking 40 minutes to get through email on this stupid vista computer. I think it will have to be replaced but the question is how to find the money.DH had a major virus issue where he thought he lost all his teaching, phd and training stuff which was a very fun dayNOT.

My weight has been down then up just a little. I need to lose 10 lbs in the next 6 weeks to be the weight I was our last trip which is doable. This past week has been really hard emotionally and physically. Very tired on minute, having great day next. Got to go Bowling with DH and kids for DH birthday and WON!!! Its been a year and a half since we went bowling. Only to be in bed the last two days and have a severe right side pain that shoots through my body and stops me dead! I mean I yell loud enough the kids worry! Its freaking me a bit because it feels more like the liver pain I had before or kidney pain than muscle pain but I'm just trying to ride it out and see if it was from bowling and my Fibro PMS which I'm having right now. I'm really begining to dread the end of the month since my Fibro goes through the roof. DD11 has taken this opportunity to challenge everything I say. Everthing is a battle fun fun fun

I've also been stressing about our trip in May which doesn't help. It was looking like we had to cancel because we would not have the money by the 30th forget about the 45th. We were close to the 30 day last year so I knew this was no problem but it was financially really close. Then I had a brilliant idea to take off the dinning plan which for 5 of us is alot. Now I can pay and will add it back the week before we go Problem solved. Wish I thought of that a month ago. We have the money but at the end of April after his extra checks come in. We got a good refund this year but it has to go to pay some back taxes we have been paying on.I think we will be able to get that payed up t once the accountant goes through the last three years of taxes. We are able to take home office deduction which is HUGE so hopefully this means we will have broken even the last few years and our payments will end or get some money back! We are still waiting on one of DH student loans (school is out is 4 weeks) to help pay the $1100+ a month in school expenses and he has a legal case so... the money is all there just weeks too late uggg!

Compared to the last 9 months things are great. I just really wish I could be normal all the time. There was a day this past week that the sun felt so good. I had worked out, did a few thing and sat on my Porch in the 70 degree weather. For a few hours it was perfect My good days make me realize how much I want to work, dance around like tigger with the kids and be the me that I know is inside. I just have to settle for a few days a year and hang on to the hope that one day I'll be cured.

Hope all is well with you all. Hang in Bright eyes your Senior year is done in 4 weeks



Sending Pain free vibes and pixie dust to all

 

[tiggspring]

Hello anybody out there????

Hope all is well and everyone is just busy getting things done with the few good days we have had throughout most of the country.

 

[brighteyes]

Hello all,

I have not been around much lately cause I have hurt my back, am sooo exhausted, and so busy with schoolwork. However, the problem is I am so exhausted when I come home that I barely have energy to cook dinner. Most times, I either get take out or throw some crap in the oven. Or have toast and make DS a mini pizza. And my back, I don't even know what I did to it, but boy does it hurt, to even move let alone stand or sit. Feels worse then when I had whiplash 2 years ago.

I don't mean to complain but i am so tired all the time, I hate it. I have no time to NOT do homework. I have so much due in the next two weeks it is panicking me, but I just do not care cause i am soo freakin tired. Just going grocery shopping tires me and I have to come home and nap. Today I was at the school (for my student hours - volunteer) and I copied some stuff, did some dishes and cleaned up the staff room, then went to the food bank and folded some clothes for 2 hours and I was so exhausted I had toast and almonds for supper, made DS food, and have been sitting on the couch trying to stay awake enough to do homework, but I am just not mentally with it enough right now.

I am applying for provincial disability when I am done school, because I do not have a full time job. But it is hard for me to find a full time job cause I can't do all jobs. Apparently I can apply for this because I have limitations on my jobs I can do. And I can still get assistance for them for my meds once I am done school. But I am told that they refuse you for a while and give you a hard time and then they say yes and then back pay you from the date you applied?? This is the crazy system that I am going to work for.

So unless I get a job soon I am not getting a puppy YET! I have money saved to get one and for puppy's spay/neuter /vet bills etc but need to hold on to that since school loan is run out and no job and non $ yet. So puppy money will go to pay our bills. Puppies are cute, but will have the time when I am done school but will get one as soon as I get a decent job!!!
That really sucks because I would be home alot during this summer to train a puppy and not as much during the fall. Oh well.

Sorry to whine and complain, I just know you guys will understand. I was just feeling so good a while ago and now I feel like I have totally crashed and hit a big brick wall. My body just needs to hold on for four more weeks.

I am glad Tigg that you are losing your weight!! WTG!!! EDuke, good job on the tennis. If I have missed others I am sorry, I am just rambling and feeling frustrated right now.

 

[tiggspring]

Hello all,

I have not been around much lately cause I have hurt my back, am sooo exhausted, and so busy with schoolwork. However, the problem is I am so exhausted when I come home that I barely have energy to cook dinner. Most times, I either get take out or throw some crap in the oven. Or have toast and make DS a mini pizza. And my back, I don't even know what I did to it, but boy does it hurt, to even move let alone stand or sit. Feels worse then when I had whiplash 2 years ago.

I don't mean to complain but i am so tired all the time, I hate it. I have no time to NOT do homework. I have so much due in the next two weeks it is panicking me, but I just do not care cause i am soo freakin tired. Just going grocery shopping tires me and I have to come home and nap. Today I was at the school (for my student hours - volunteer) and I copied some stuff, did some dishes and cleaned up the staff room, then went to the food bank and folded some clothes for 2 hours and I was so exhausted I had toast and almonds for supper, made DS food, and have been sitting on the couch trying to stay awake enough to do homework, but I am just not mentally with it enough right now.

I am applying for provincial disability when I am done school, because I do not have a full time job. But it is hard for me to find a full time job cause I can't do all jobs. Apparently I can apply for this because I have limitations on my jobs I can do. And I can still get assistance for them for my meds once I am done school. But I am told that they refuse you for a while and give you a hard time and then they say yes and then back pay you from the date you applied?? This is the crazy system that I am going to work for.

So unless I get a job soon I am not getting a puppy YET! I have money saved to get one and for puppy's spay/neuter /vet bills etc but need to hold on to that since school loan is run out and no job and non $ yet. So puppy money will go to pay our bills. Puppies are cute, but will have the time when I am done school but will get one as soon as I get a decent job!!!
That really sucks because I would be home alot during this summer to train a puppy and not as much during the fall. Oh well.

Sorry to whine and complain, I just know you guys will understand. I was just feeling so good a while ago and now I feel like I have totally crashed and hit a big brick wall. My body just needs to hold on for four more weeks.

I am glad Tigg that you are losing your weight!! WTG!!! EDuke, good job on the tennis. If I have missed others I am sorry, I am just rambling and feeling frustrated right now.

Bright Eyes its so good to see you!! Sorry you are having such a hard time. I was feeling really good for several weeks too but now not so much. Lots of financial stress trying to pay for our trip next week. Financially the next few months look great. We keep getting good news. It just its in the pipeline and Disney wants their money now. I refuse to give up a trip becasue the money is a few weeks off soo... I think it is really messing with my Fibro.

Disability here is no piece of cake either it took me more than two years to get mine and it only happened after I completely wigged out when I got a forth or fifth rejection stating I would need to go before a Judge in a year!This even though all 13 of my Drs and the final Social Security Dr all said I could not work. Social security said I was in minor discomfort but fine. I hadn't left the House for nearly two years so in desperation I called my congressman. In two weeks I was before a judge and three months later I had two years of back payment minus the 30% I had to pay the social security attorney for filing the paperwork and trying to deal with this insane system.

Honestly I don't know how you do it. This week I went to McDonalds to get DH a coffee. Ordered it, paid at first window, waited at second and then just drove off without the coffee I must have got some thought in my head and just drove home I know my DH is just pushing to get the next four weeks done. I can only imagine how you feel.

Hang in there and do whatever it takes to survive. If that means Disability for a while don't feel bad. I waited because I was ashamed which was really stupid on my part.

For the record your not complaining your venting...We all gotta do that sometime. BIg hugs from PA

 

[kaytieeldr]

Okay - at least for now, my doctor thinks (and, heck, may even be right) that my symptoms were due to a severe calcium and vitamin D deficiency. I'm taking both regularly - the former daily otc, maximum advised and the D weekly as prescribed - and at least for now, I do feel better!

Just wanted to thank everyone for the advice.

 

[EDuke98080]

Okay - at least for now, my doctor thinks (and, heck, may even be right) that my symptoms were due to a severe calcium and vitamin D deficiency. I'm taking both regularly - the former daily otc, maximum advised and the D weekly as prescribed - and at least for now, I do feel better!

Just wanted to thank everyone for the advice.

I am so glad you are feeling better! There is a great site on vitamin D http://www.vitamindcouncil.org/ check it out. Also if you can get liquid D it is absorbed more quickly from what I have heard.

 

[EDuke98080]

Bright Eyes its so good to see you!! Sorry you are having such a hard time. I was feeling really good for several weeks too but now not so much. Lots of financial stress trying to pay for our trip next week. Financially the next few months look great. We keep getting good news. It just its in the pipeline and Disney wants their money now. I refuse to give up a trip becasue the money is a few weeks off soo... I think it is really messing with my Fibro.

Disability here is no piece of cake either it took me more than two years to get mine and it only happened after I completely wigged out when I got a forth or fifth rejection stating I would need to go before a Judge in a year!This even though all 13 of my Drs and the final Social Security Dr all said I could not work. Social security said I was in minor discomfort but fine. I hadn't left the House for nearly two years so in desperation I called my congressman. In two weeks I was before a judge and three months later I had two years of back payment minus the 30% I had to pay the social security attorney for filing the paperwork and trying to deal with this insane system.

Honestly I don't know how you do it. This week I went to McDonalds to get DH a coffee. Ordered it, paid at first window, waited at second and then just drove off without the coffee I must have got some thought in my head and just drove home I know my DH is just pushing to get the next four weeks done. I can only imagine how you feel.

Hang in there and do whatever it takes to survive. If that means Disability for a while don't feel bad. I waited because I was ashamed which was really stupid on my part.

For the record your not complaining your venting...We all gotta do that sometime. BIg hugs from PA

It is really too bad with the daily struggles some of us have just to get through the day that there are more battles for the already weary.

 

[kayrosek]

Bright Eyes its so good to see you!! Sorry you are having such a hard time. I was feeling really good for several weeks too but now not so much. Lots of financial stress trying to pay for our trip next week. Financially the next few months look great. We keep getting good news. It just its in the pipeline and Disney wants their money now. I refuse to give up a trip becasue the money is a few weeks off soo... I think it is really messing with my Fibro.
Disability here is no piece of cake either it took me more than two years to get mine and it only happened after I completely wigged out when I got a forth or fifth rejection stating I would need to go before a Judge in a year!This even though all 13 of my Drs and the final Social Security Dr all said I could not work. Social security said I was in minor discomfort but fine. I hadn't left the House for nearly two years so in desperation I called my congressman. In two weeks I was before a judge and three months later I had two years of back payment minus the 30% I had to pay the social security attorney for filing the paperwork and trying to deal with this insane system.

Honestly I don't know how you do it. This week I went to McDonalds to get DH a coffee. Ordered it, paid at first window, waited at second and then just drove off without the coffee I must have got some thought in my head and just drove home I know my DH is just pushing to get the next four weeks done. I can only imagine how you feel.

Hang in there and do whatever it takes to survive. If that means Disability for a while don't feel bad. I waited because I was ashamed which was really stupid on my part.
Tiggspring I had the same problem financially before our trip. On the advice of a CM I temporarily modified my reservations. I was able to change our tickets and dining plan options so I diden't owe as much and then when our money was available I switched them back and paid the extra. i don't know if something like hat would be of any help to you but it worked for us so I thought I'd share.


For the record your not complaining your venting...We all gotta do that sometime. BIg hugs from PA

I haven't posted on this thread before. I just found it today but I too suffer from Fybromaialgia.

 

[Indiana Rose Lee]

Don't overtake vit D. It leads to magnesium deficiency, which causes leg cramps.

Tried Lyrica again for pain. Started gaining again.

 

[tiggspring]

Okay - at least for now, my doctor thinks (and, heck, may even be right) that my symptoms were due to a severe calcium and vitamin D deficiency. I'm taking both regularly - the former daily otc, maximum advised and the D weekly as prescribed - and at least for now, I do feel better!

Just wanted to thank everyone for the advice.

WOW that is so great! I'm very happy for you. It is amazing how taking certain supplements can work so much better than the medicines without all the risks. I found that to be the case for me even though most Dr's didn't believe it 15yrs ago. Glad you found a Dr who isn't med happy and you are feeling so much better. Please let us know if you keep feeling this good. It might help some other newbie

 

[tiggspring]

I haven't posted on this thread before. I just found it today but I too suffer from Fybromaialgia.

Welcome Kayrosek! I'm so glad you have joined us. There is alot to read on this thread. You will find that while we all share many symptoms we all have had to find out what works for us. There is no typical case of fibromyalgia. Some of us have good luck with meds and others supplements. If you look back on this thread there is alot of tidbits for you to work with and you will see its a great place for support. You'll see when we have had new members join there will be alot of posts about our symptoms and fixes. If you do not have a serious case do not let some of our symptoms worry you. some of them are crazy but they tend to come and go and we have all found ways to cope. I'm sure you will too This is the first group I have joined becasue everyone here is quite positive despite their down days. Must be the Pixie dust.
Two things you might want to look at. On pg 19 post #281. I talked about a new study that links the XMRV virus to fibromyalgia. Also for those of you that havent seen it, DH says that CNN had a story on a second form of MS with a different type of T cell attacking the body IL-17 secreting Tcells. Maybe some of us have that.

Don't overtake vit D. It leads to magnesium deficiency, which causes leg cramps.

Tried Lyrica again for pain. Started gaining again.

Thanks! I will keep that in mind as I'm taking quite a bit of vitamin D for my deficiency.

Is the weight gain worth the pain decrease? My pain always is worse when I'm heavier. Although I gain weight when I'm sicker so it a bit of the chicken and the egg.

It is really too bad with the daily struggles some of us have just to get through the day that there are more battles for the already weary.

Thanks for the kind words. helps to have a place where people understand We kinda knew what we were in for when we went into mental health. I had seen many social workers and teachers struggling as seniors when I worked as a nursing assistant. I knew Dh and I would make one decent salary with us both working. Half what we would make in other fields. I really wish we had both gone into nursing Dh hubby would be making at least $20,000 more a year at his level. Thing is it was a vocation for us as much as a career and we NEVER thought I'd become disabled. At least DH has great options with the teaching its just a long haul in your mid fourties to start over. Our kids should be better off than we are and our old age should be more secure so we're doing better than many out there. I just get tired of waiting for someday. Want to enjoy life now and thats hard when money is up and down.

Speaking of difficulties, how is your sick kitty doing? Hope you have had some time to take care of yourself. Have you been as up and down as me andand Bright? I'm wondering if its the crazy weather.

Well talked enough. Isnt that a surprise? . So glad to see eveyone!

tocheri,Cnell, tinkerfun Hope you are all doing well.

Sending pain free vibes and Pixie dust to all

 

[tiggspring]

Happy Easter!!!!

Love this spring weather. Eduke are you floating or dry up there in MA. My family has been lucky but alot of the places I have lived are relaly close to all that flooding.

Sending pain free vibes and pixie dust to all

 

[Tinker'n'Fun]

 

[tiggspring]

Stopping in to say hello. Sorry not reading backwards as I have a killer sinus infection and my eyes are constantly tearing, which makes it hard to read, but I don't look to type, so typing is a-ok for me...

My fibro has been in-check, not great/not bad. DD finally decided on her college so that is a good plus in our family. She will be dorming at a college 10 minutes from the house. I feel kind of responsible, but they grow up with a sick parent and find it hard to leave. But at least she will be on her own. I am very proud of her.

On that note, I will also be in Disney in two weeks. DD is dancing right before the 3pm parade a MK on April 19th. I am so proud of her. I am sure I will be the one sobbing hysterically as she dances by.

And just because I would hate to pay favorites, DS is doing great also. He has been picked to start all AP classes next year. He is really excited also. He is more excited that we are taking him to Disney with 150 teenage girls.

I hope that the spring-time and warm weather brings relief to everyone. Have a great day. Diane.

I think you son is getting the better end of that deal!!!!! Watching my son grow is such an adventure. SO different from my girls

Hope you are feeling better soon. I used to get sinus infections every spring. I havent had once since I got Fibro mmmmmmm isnt that weird

I worry too about the affect my FMS is having on my kids socially. Hopefully they will feel good leaving the nest when the time comes. On the other had going through something like this as a family can really prepare them for adulthood. They should know that they can survive most anything with some patience and tenacity

My Fibro has been all over the place due to the stress. Paid for my trip yesterday but it took some sly work on my TA's part to keep the ressie. she eliminated all the tickets but one day so we could keep our package and keep our ressie. Otherwise I just didnt have the cash in time. Wouldn't ya know that DH's financial aid came in last night . We still dont have the cash but we know it is comming and the trip is on. We'll be at the Poly Mother's day weekend and the whole week after . Which covers my birthday and the 16 anniversary of our engagement at WDW!! I think I am just starting to believe we are going!!!!

Sending Pain free vibes and Pixie Dust

 

[EDuke98080]

Hi All! Welcome Newbies!

Sorry it has been so long. I had a quick trip to Chicago and then to Boston both with my daughter for interviews for her grad school applications. I also had business in Chicago so it was double duty. I was lucky because my Mom took care of my son and the sick cat so I got to go and not worry too much about him. The schedules have knocked me out and I havn't had time to post.

Tink - you must be so proud of ur kids. Enjoy your trip to WDW. It will be especially magical watching ur daughter!

Tig - I am so glad ur trip finances worked out! Try to relax and get ready for the fun! I was lucky that we were in Chicago for the great flood that was here but I did feel bad that my Mom had to walk the dog in all that crappy weather while we were enjoying the sunshine in Chicago. Thanks for asking!

kaytieeldr - how r you feeling? Are the supplements helping yet?

Bright - keep on swimming, keep on swimming.... ur almost there.....

Everyone else - hope you are all doing well and enjoying Spring!

~Erika


PS Does anyone have suggestions fro a 25th anniverasry gift for my DH? I have no idea and no gift yet and it's next week...

 

[dizneemom]

Hi everyone-my name is Dana and also have Fibro. I have also had Guillain-Barre Syndrome and still have leftover things from it, chronic fatigue, Myofascial Pain Syndrome, Rheumatoid Arthritis....ok I am going to stop listing---its making me feel depressed

Anyway, I have a lot of pain when the weather changes too and cannot find any meds to really help. I take tramadol for pain and darvocet for break through pain. My problem is that I cannot really tell which illness is causing the pain although I know fibro is one of the worst.

I really don't have many friends because I feel I cannot give what it takes to be a good friend. All my energy is taken by my 3 kids and husband. Does anyone else feel this way????

My doctors say to excercise but I am sure you all know that is easier said than done. Oh I wish they could understand! When I do-I end up in bed for days. I try to do as much as possible and that is it.

I love all things disney and found this thread! Yay! Do any of you use those motorized carts at disney to get around? I am thinking I am going to need one this time.

Anyway, thanks to the OP for posting this thread. Any info I can get to get through a day easier is so much appreciated!

 

[tiggspring]

Hi everyone-my name is Dana and also have Fibro. I have also had Guillain-Barre Syndrome and still have leftover things from it, chronic fatigue, Myofascial Pain Syndrome, Rheumatoid Arthritis....ok I am going to stop listing---its making me feel depressed

Anyway, I have a lot of pain when the weather changes too and cannot find any meds to really help. I take tramadol for pain and darvocet for break through pain. My problem is that I cannot really tell which illness is causing the pain although I know fibro is one of the worst.

I really don't have many friends because I feel I cannot give what it takes to be a good friend. All my energy is taken by my 3 kids and husband. Does anyone else feel this way????

My doctors say to excercise but I am sure you all know that is easier said than done. Oh I wish they could understand! When I do-I end up in bed for days. I try to do as much as possible and that is it.

I love all things disney and found this thread! Yay! Do any of you use those motorized carts at disney to get around? I am thinking I am going to need one this time.

Anyway, thanks to the OP for posting this thread. Any info I can get to get through a day easier is so much appreciated!

Dana,

I know exactly waht you mean about friends. We have moved twice since I was diagnosed. Once from RI/MA to WV and then to PA. Since moving I have no "local" friends" my energy goes to surviving all the to do's. We havent been to church more than a few times in the past 5 years because by Sunday I have to stop. I have a good friend who visits twice a year with DD5 who I have known since first grade in. We talk on the phone on and off and she is great with my Fibro. I have another friend in RI that I talk to several times a week and one from WV that we chat about once a month but thats it. I haven't had a girls night in 7 years. I have people I chat with at Girls scouts etc but Fibro limits what I am willing to commit to because if I do one thing I dont have the energy to do another and right now my DH really needs me to hold it together and that has been HARD!

 

[tiggspring]

Dana

As far as Disney I was determined to not use a scooter last year. I wanted my vacation to be a vacation from everthing including the Fibro ( I know wishful thinking). Looking at a scooter after ever ride would have ruined the magic so I planned to the extreme and it worked for a week and then I crashed for several and it took months to get back on my feet. I know he two week crash was due to the trip. Not sure what casues the next 9 months.

The top two things that helped were staying in May because I'm intollerant of heat/cold and staying in Tahiti at the poly so I could get back to the room quickly to allievate a migraine or crash. Extra driving and/or busses is just too much for me over 7 days. I see you going in May so that a big plus

These things helped me. 1. I packed a month in advance and stayed in bed as much as possible the week before we went. So I was not stressing about bags the week before we went or over exerting myself. Since we went in May I bought all of our summer clothes shoes and just packed them right away. 2. Each kid even my 4 yr old had a fanny pack with a fan mister (hanging outside), drink, snack ,hand wash, autograph book and pen, penny press book, neck cooler and map. This kept everyone independant and stopped mom from searching for everything every time someone needed something small 3. USE RIDEMAX!!! I cant say enough about this program. We waited on average 5 min. It was right on the money and the kids didnt fight all week! each kid gave me their must see rides for the day and they new the list would avoid lines so they didnt fight over who got to pick the next ride and Mom and Dad didnt "play favorites" because it was the list that told us where to go. It basicly keep us moving for 5min standing for 5min then the ride or show. This pattern really kept me from getting too tired and too stiff Priceless on so many levels.4. To avoid exhastion I planed to do one side of the park per day. On the day we went to Adventure land we took the train at opening and since I'm slow we arrived in the same amount of time as it would have taken to walk .5. ( you might not want to do this) I pulled myself off my pain meds the month before I went because they stop working after awhile. by doing this they worked much better on my trip. I also got some stronger meds from my DR in case of an emergency 6. we kept a link to all ears menues and the Dis snack thread on our black berry. while we were in line the kids would decide what they wanted to eat then there was no meltdowns while dinning and we got our meals much faster. You could also print them out. 7. we were a bit fanatical about purell on/off rides and clorox wipes on remotes/doornobs in the room. I knew several people who went last May all got sick but us so it must have worked8.We laid out all the clothes the night before so Mom did'nt have to go looking in the AM. I could take a shower every morning as well as every night to avoid stiffness. Our biggest problem last year was packing back up so this year we are ging to AK our last full day so we have a bit more time in the hotel room. I am also planning to put each days dirty clothes in a large ziplock then having DH put them in an empty suitcase in our van every am before we go out. The Handicap parking is really close to Tahiti so we pass it any time we go on the ttc and we will be mostly packed by Fri!

Really it came down to obsessive planning based on my Fibro and my kids habits.

hope this helps!