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Posted 11/12/2008 9:49 PM (GMT 0)
 

Hi Everyone,

 I am having such an awful few days and I finally am having a "sit down and cry" moment and thought I would see if my friends could lend some support. I have done well with my Cymbalta and yeast-free diet/ low-carb diet along with walking and Yoga. I also take Tramadol once in a while. I was doing great until this new season hit and I am once again miserable! My doctor has doubled my Cymbalta to 120mg and I am taking 400mg of Tramadol a day and still in pain. I finally started the process of getting the ball rolling with disability benefits today also and that made me so sad. I just feel like I will never be able to be a medical assistant again. I loved this job and it all seems so finale. I am just tired of thinking I have this all figured out and its under control and BOOM another curve ball. I have another call into my doctor, but I don't even know what he can do at this point. I hate narcotics because it just seems like you need more and more of them and Chicago has a long winter! I know everone has bad days,weeks or months, and I almost feel bad dumping on people that feel as bad or worse than I do, but I also don't feel like I can really talk to anyone else that understands. I was just diagnosed in July and this is my first cold season. Is it always like this? Well, thanks all. tomarrow is another day and hopefully it will be better huh? Take care, my Fibro friends,Sheri                

Posted 11/12/2008 10:07 PM (GMT 0)
Sheri, it really hurts me to have to read posts like this one.  It's so sad what fibromyalgia can do to a person.  You love your job and the future looks so bleak.  But, it's not bleak.

 

Chicago in the wintertime is horrible.  I lived in Cleveland, Ohio for 28 years so I do know what you are going through.  I was miserable in the winter, too, and I also suffered from light deprivation but didn't realize it until I moved to Florida!  The sunshine and light makes me feel so much better.  Maybe you could get a light box and that could help some.

 

Also, have you thought about trying the malic acid/magnesium supplements?  Some members are having good success with these.  I know I am!  The info about them is in the Fibro 101 thread.

 

Don't throw in the towel just yet.  You just might find something that will truly help you.  I don't take narcotics either and have been able to control the pain.  If you find you can't continue in your line of work, I think something else will come up and you just might like it better!  That has happened to me several times in my life.  Just continue to count the blessings you do have and keep up the search and posting here.  I'm sure other members will have other ideas for you too.  I hope you are feeling better soon.  This could just be a short flare you are going through. 

 

Sherrine

Posted 11/12/2008 10:33 PM (GMT 0)

Hi Sheri and Welcome-

I had some real rough days a couple weeks ago and had to have a good cry also. Don't ever feel bad for feeling sorry for yourself- it gets to be just too much at times. We will come to your "feeling sorry for yourself" party! yeah yeah

My fibro hit me so hard 6-7 months ago and have not worked since and it has broke my heart also that I will probably never work fulltime again and parttime is even iffy at this point. I loved my job and the people I worked for and with. I do feel for you. I also applied for Soc. Sec. Disability.

I have lived in Minnesota all my life and this will be the first winter with fibro. The cold weather already is affecting my muscles and giving me more pain. So, we are in this together. My neighbor down the street has had fibro for years and she told me to find a temperature that you are warm at in your home and keep it there. I am doing that and not sure if it is helping? And I have a feeling we are going to have to wear snowmobile suits just to run errands!  turn    

GamJill  

  

Posted 11/12/2008 11:30 PM (GMT 0)
Dear Sherrine and GamJill,
I so appreciate your kind words. I know that this is just another temporary setback, but I think it just got to me today.The light box is something I will definately think about. It is so dark and cold and damp here! UGH! I have done alot of good things since my diagnoses like getting myself healthier by the 54 pounds I lost and starting a walking and Yoga program. I am taking much better care of myself instead of everyone else but myself and that was a big step for me as many mothers. I agree with you, Sherrine that this may be just a new chapter in my life, and I do believe that if you look hard enough, any bad situation can teach you and make you stronger. I have also lived with epilepsy since I was a very young child. I am completely controlled on meds though. (Thank god) I have lived through the pain of a disease or illness that cannot be seen before and I will do it again, but today, just today, it is so hard because I would do anything to stop this pain. Thanks again for attending my "pitty party" you guys. Gentle Hugs to you both!
Sheri
Posted 11/13/2008 12:08 AM (GMT 0)
SHerri~
I'm sorry to hear that you're having a tough time right now and hope that your meds can help curb the symptoms.
I was wondering about your yoga... I have thought about trying yoga but never know where to start with it. Do you think you could give me some advice?

Terrie
Posted 11/13/2008 1:12 AM (GMT 0)
Dear Terrie,
Yoga has helped me some very obvious ways, but I have also found that it has given me some extra's I was not expecting. I find myself very tight and stiff alot and learning some yoga has helped me find some ways to stretch those areas that are sore because of the tightness. It was very hard at the beginning because I could not keep my balance. I have gained alot of strength in the past 3 months and gotten pretty good at it. It is also very relaxing. At the end of our sweating and working, we lay down and my yoga instuctor talks us through a visualization. We learn how to see ourselves on a mountain. A new, healthier self or we watch ouselves put a rock in a bag for every negative thought and throw the bag in the ocean. things like this. I know it sounds weird, but it is so relaxing. Alot of yoga is also learning how to breathe correctly which I don't think I have ever done. I would recommend asking if any of the instructors have experience with Fibro patients. There are 3 of us in my class of 8. she gives us things that are helpful for our condition. I am stronger, more relaxed and don't feel as if I am i knots all the time. The nice thing about yoga, is that you can do it yourself anytime. I hope this helps and thanks again for the support today.
Sheri
Posted 11/13/2008 3:09 AM (GMT 0)

Hi Sheri, and welcome to the forum. I saw that you started to apply for SS, and you're feeling a sadness about your future. I waited for several yrs before I applied for SS, hoping things would turn around and I would be 'fine' again. I have a tendency to hold things in for too long, then I end up making myself sick when it becomes too much. Release your negative emotions, get rid of them. I need to follow my own advice. turn   Once that is out of your system, you will be free to see new opportunities.

I saw your response to Terrie, re yoga. You were very into it, I could feel your excitement in describing it. Have you ever thought about teaching yoga? The best teachers are ones who love their subject! I have always believed when one door closes, another one opens. This may be the door for you. You would be helping others, while you continue to help yourself. Just a thought.

I wish you a peaceful evening.   God bless.  Alice.

Posted 11/13/2008 3:40 AM (GMT 0)
Hi Alice,
I actually have thought about your idea before because you are so right when you sense that I so love yoga. I am usually the type of person who likes to control everything so this is an opportunity for me to let things go during the week. I know I just need to accept this and let the new opportunities happen and I 'll get there! I have only been taking yoga for 3 months and am already signed up for the next session and who knows..we will see. I would love to continue helping people in some way and wouldn't it be something to open up the first Fibro yoga classes?ell, thanks for the kind words and I will give this some thought. Take care and you all did really help today aand I knew you would. May God Bless you, Sheri
Posted 11/13/2008 4:13 AM (GMT 0)
The one thing that we do not understand after contracting fibromyalgia is that nothing will completely get rid of the symptoms. Even when the doctors say we can control it they are incorrect.

For example, there is the claim that exercise reduces pain. Yes, it can however, that is not guaranteed all of the time you exercise. New medications like Lyrica are advertised as the drug that will make us all better. That is not true. Some of us feel improvement and some do not.

I am saying this because I get the feeling that people think I do not do enough to make myself better when in fact, like you, I do a lot.

Chronic illnesses wax and wane. We do our best to work our way though them with medication, diet, exercise and relaxation. However, flares come unexpectedly.

I commend you on working so hard with your yoga classes, weight loss (wow) and other lifestyle changes. Instead of being angry with fibro you decided to do the best you could. I am very impressed.

Rainy, cold, miserable weather affects us. I agree stay as comfortably warm as possible at home. Look for the most comfortable mattress you can find and buy it. Stock up on heating pads. lol

Take care, Donnaeil
Posted 11/13/2008 4:44 AM (GMT 0)
Dear Donnaeil,
I have begun dressing in layers and I invested in a heating blanket for my bed. It is wonderful. I have been taqking alot of hot baths and lighting candles and listening to music too. I wanted to do what I can do to help myself and not just depend on the drugs to do it, which like you said, they really don't. Will there be a time that we will be pain free? this constant aching and what feels like muscle spasms are aweful. Yoga should be fun tomarrow! I think I need to go away for a month or two this winter!! Anyone wish to join me? Sand and beach and warmth. Ah, it sounds wonderful. Thanks for your kindness, take care of yourself and stay warm!
Sheri
Posted 11/13/2008 1:02 PM (GMT 0)
I had a bad couple days a few weeks ago. I cried all day. The next day I was able to see things a little clearer.I live in pa and the colder days and nights have made it tough here we went 5 days with no sun all clouds and that did not help either.
The Malic acid sure does help me.I am for ever using my rice bag and heating pad. We have a hot tub so i sit in there every night There are nights i dont even feel like getting changed for the tub but i do it and it helps alot. some times I do not even turn the jets on just the warmth feels good so maybe a long soak in a bath tub would help I have also started taking extra vitamin D and i take a B complex i know when I take the B I have extra energy. You will get through this and all your friends here will help.
Lee Ann
Posted 11/13/2008 2:59 PM (GMT 0)
WE don't mind at all. We all have had days liek that when things just get to be too much. It's good that you have a place to let it all out to others that can understand what you feel. It feels good to let it out sometimes, and have a little cry. Then when it's done, pull yourself up, and try to move on. You are going through a bad patch right now, but it won't always be liek that. Try to remember the good days that you had. It's been cold and rainy here too, and I know I always feel worse when I haven't seen the sun in a few days. Last night I was so cold, I coudl feel the pain start in my legs again. So I decided to do my stretching to warm me up, and it felt so good! I also take malic acid, adn it has helped so much with the energy. When I forgot to take it for a couple days, I wasn't able to pusg dd on the swing for 5 minutes without taking a break, so I know it works. Good luck, I sincerely hope you get to feelign better soon. (((HUGS)))
Posted 11/13/2008 6:10 PM (GMT 0)

Sheri I live down state from you and those gloomy days got to me big time too. At least the sun is shinning here today. My niece said Menards has lights. I have not had a chance to check them out. I need to replace every light bulb in the house with them for the winter. smilewinkgrin It didn't use to bother me when I was so busy but it sure does now.

 

I live in a small town and don't have the things available that you do but the yoga sounds great. Life has a funny way of turning things around for us.

 

I do know where we can go for the winter, Sherrine's house in Florida. devil GamJill and I are going on New Years day and Sherrine is going to wait on us like the gracious hostess she is while we lay in her pool.

 

I think we have some more gloomy weather coming so maybe we should put pictures of summer scenes over our windows. turn

 

luv and hugs

Marlee

Posted 11/13/2008 6:40 PM (GMT 0)
Hey all,
I wanted to check in with you today and thank you once again for all your support. The good news here today , is yes Marlee, the sun is shining and it does make such a difference! I have the blinds wide open and the sun is beaming all throughout the house. The Menards by our house is going out of business and everything is going for really cheap, so I am going to go get me a light! I am not hurting as bad today and I am feeling better about things. I think I had too many days in a row of feeling bad and felt like I couldn't take it anymore! I guess it really is true about things looking different the next day. My husband and I talked about the disablility and I told him it was really bothering me and he pointed out to me that it doesn't mean I am a failure or it is forever and that it is my money anyway. He did try to make me feel better, which was great, but the next thing he said was "now get some sleep because I really don't want anymore bad days from you." I was a little irritated at that point because I think he thinks Fibro is something that you can control bt thought alone. I agree that your positive approach is key (like any illness) but I just felt like it was not the right thing to say at that time. I am so in for the trip in January to florida to Sherrines house! Does she know about this?? LOL I am thinking of putting posters around the room of the beach for the winter. Since pain is at a level I can toerate, I am going to get some things sone! YAH!! Thanks again all. I wish I could wrap my arms around you and give you a hug to thank you {{Marlee,Mamanan,leemadd,donnaeil,Terri B, Irish Babe,Sherrine,GamJill}}
Posted 11/13/2008 8:01 PM (GMT 0)

Hello, 

I found much comfort in reading these postings. I just decided out of desperation today to join this forum, hoping and praying to find others to talk to about what I've been facing alone for so long. 

I too have been having a rough patch since this past Sunday.  I've been miserable, hopeless, down on myself and crying all week.  cry   I haven't been to work this entire week and even though I don't want to admit it I'm finding it harder and harder to manage my career these days.  My memory is awful, I've noticed that I'm not even speaking right anymore, it's pretty bad when you have a get together and ask your husband to please stir the paintballs (meatballs!)  I worry if I'm making mistakes like this with people that I work with and looking like an idiot!  My family and I laugh it off, but I don't know what others think about it.  I've also noticed that I can't focus or think straight anymore, I can't even spell correctly anymore and I used to love to write!!!  I'm only 39 and I do not know if I could manage not working, I have the type of mind that needs to stay busy, even though this illness is not allowing me to do so anymore.  I feel so lost and like such a failure to my family.  My husband relies on my income to help us survive and my insurance is what covers all my medical needs!  People have suggested that I apply for SS, but I'm not sure how that all works and have no idea if it would supplement our income enough.

I do not mean to come across so negative...this is a downside to this illness as well.  I used to be the fun loving, upbeat, positive chatter box that everyone loved being around.  I used to lift everyone else up when they were down, I'm so not used to the roles being turned around on me!  I just want to learn to cope and manage this better than what I have been lately.  I was diagnosed with FMS over 15 years ago and never really took it seriously until this year due to it getting to the point of feeling overwhelming all the time.  I really DO have good days, it just seems like there have been more BAD than good this past year and I'm totally lost with how to cope anymore!

This is my first time using a forum, I'm not really sure how this works, so I hope I haven't already broken the rules with my negativity and scared you all away!  I am just so desperate to talk with others in the same situation!!!

Thank you for reading this, and I truly look forward to building some new friendships.  I'm here to listen, believe it or not I am good at that!  I'm good to laugh with, cry with or just jabber with. 

Reaching out to find some Fibro Friends,

Deb

Posted 11/13/2008 8:19 PM (GMT 0)
Dear Deb.
Well, You know from reading my posts above that I too have had some down days lately. Let me assure you this is exactly the place you should go! I don't know the ends and outs of the forum either, but everyone is patient and has been in your shoes. I read posts for a long time before I finally wrote and it helps. It helps to get support from people that really know how you feel. I have not figured out how to list the whole medications at the bottom of my post yet, but are you taking meds? What type of doctor do you see for you fibro? Maybe, like me, you will have to find something else to do for income. I just know I cannot do something as physical as I was doing and I never know how long one of these flare are going to last, so I am thinking long term I should start the process. My Cymbalta has helped my" Fibro Fog", but I still have days when I can't remember how to spell a word or remember what I was going to say. We all do. I am so glad you decided to join and let others give you support. I will keep you in my prayers and there is a ton of information on this forum for you so please take advantage of that too.Welcome and don't worry about being excepted here. We are all here to help each other with encouragement and ideas. Take care and gentle hugs to you, Sheri
Posted 11/13/2008 9:05 PM (GMT 0)

Sheri-

Thanks so much for your kind and comforting words!

I just recently (September) started seeing a rheumatologist for my condition.  My family doctor put me on Cymbalta, Tramadol and Trazadone, the specialist has since upped the dose of Cymbalta to 90mg daily, I take the Tramadol as needed, but it truly doesn't seem to do anything for the pain.  The Trazadone has aided in the sleeping at night but not totally.  Yesterday he added one Xanax at night with the Trazadone to help me relax and get a better nights sleep.  I did sleep well last night, however by later this morning the anxiety had kicked in and the pain, well, that just never seems to disappear!  I'm going to a lung specialist on November 19th to have a sleep study done, the rheumatologist feels that my sleep disturbances at night are part of what is still causing the flare ups.

It's just been so devastating, not to mention embarrassing with co-workers, friends and family.  Everyone wonders how you can see so many doctor's and still never feel well.  Your family feels set aside and thinks you just don't want to be with them, when that's not it at all...you want to join in on the activities they are doing, but sometimes it's hard to last an entire day like I used to, especially after working all day!

I had part of my thyroid removed a little over a year ago and currently take synthroid for that as well.  It seems that my fibro kicked in overtime when the thyroid started giving me problems.  I used to run and exercise on a daily basis...I remember my little brother always calling and asking if I had time to squeeze him into my schedule because I was so active.  Life has changed so incredibly much it's just been entirely difficult to get out of the depression of knowing that life is never going to be the same as it once was.  I feel I've missed out on opportunities with my career due to the constant set backs.  It's like everything can be going so great and your on top of the world then the next thing you know you are flat on your back again!

Thank you so much for allowing me to vent here today.  I have read some interesting posts already and am finding some great information.  I guess it's just comforting hearing similar stories to my own.  I was attempting to find out some more information on CMP, because I feel that I have this to go along with the fibro but I'm uncertain as to how to ask the doctor to be tested for it without having all of my facts straight.  It wasn't until last September when I had finally had enough and went to my family doctor and told her what I expected from my visit that I finally started getting some action in the right direction.  I guess you have to be more proactive these days to get the answers you need!

I do believe that you can list the meds under your signature on the control panel.  I was confused by that as well!

Again, thanks for the prayers, as you will be in mine as well.  I thank God for giving me such great faith to believe, because without Him I don't think I would have managed through all of this for nearly as long!!!

Thanks for putting a smile on my face in knowing I've found someone to talk with about all of this!!!

Deb

Posted 11/13/2008 9:40 PM (GMT 0)

Deb, welcome to the family. I think a lot of us read over posts for awhile to see what the site was like. The ppl here are very kind, full of info, and always have an ear to listen. We have all been where you are, as you will see, the more you read. When I thought I might have FMS, I didn't have internet. I went to the library and researched, I took books out like crazy. You can look on the first page of this site for Fibro 101, and tons of good info. The mods tried to put it all together to make it easier to find.

As far as being a newbie, you're doing fine. We can all feel down at times, but that's when we all try to be there to help each other to see the light again. Life isn't over, it's just different. We find ways to adapt, and we share those tips. These are some of the most generous ppl to share ideas, help you to put things in perspective, and understand what you're going thru.

I suggest you keep reading old posts, and current ones, and ask questions. I'm sure at least one of us, if not many more, knows just what you mean. Welcome, you're among friends!

God bless.  Alice.

Posted 11/13/2008 9:56 PM (GMT 0)

Alice -

Thank you for the warm welcome!  It's nice to be among friends and people who understand!

I look forward to getting to know everyone and I've spent nearly the entire afternoon reading old and new posts! wink

Many Blessings,

Deb

Posted 11/13/2008 11:36 PM (GMT 0)
Hi, Deb, and welcome!  I almost missed your posts!  I'm glad you decided to join in.  You have come to a great place.  We have wonderful people here that have good ideas that will help you live a full and enjoyable life with fibromyalgia! 

 

Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good info all about fibro.  You will learn a lot there.  Also read back posts.  There is a world of info in them, too.

 

Yes, fibro can be mighty depressing at times but I find that if I don't dwell on it, the pain can fade in the background some.  I know this is so new to you and, since there are so many symptoms, each new thing that pops up can be scarey.  That's why it's good to learn all you can about fibro and come here and read and ask questions.  We have been there and done that!  This will help aleviate your fears and you will feel better.

 

Fibro fog.  You have to have a sense of humor with it.  I'll never forget when I tried to start my car with the key to my freezer!  smhair    I have done so many dumb things, but we all have and that's alright.  Don't be hard on yourself about that.  Learn to laugh about it and move on.  Plus, you sound like you are stressed out.  Deb, this can make the pain and fog worse.  Try to relax about it.  We will help you and  you will learn how to control your pain.  When the pain is more under control and you aren't so frightened about things, the pain should get better and the fog too.  The more you think about it the worse it gets...especially the fog!

 

I take ibuprofen and Tylenol for my pain and I just started taking malic acid/magnesium supplements and they help with pain and fatigue.  They have helped me but they don't work for everyone.  There is a link all about them in the Fibro 101 thread.  Read it and see what you think.

 

Moist heat and hot showers feel great for those muscles.  Many here have Bed Buddies.  They have beans in them and you heat them in the microwave and they give off moist heat for about a half an hour.  Rice bags do that too.  You can make a small rice bag.  Take a tube sock, fill it about 2/3's full of raw long grained rice, and tie a knot at the top.  Voila!  A rice bag!  LOL

 

Light exercise is important. If you sit or lay too much, you will be stiff as a board!  Walking is a wonderful exercise for fibro and also swimming.  There is a link in the Fibro 101 thread that has some great stretching exercises in it.  They really do work and are done sitting down.  So, if you have a desk job, you could print these out and do them occasionally during the day.  They help to keep the muscles more flexible.

 

You will need to learn to pace yourself when doing things.  You can't do things in the same time frame as you used to, but it can all still get done. 

 

You are right.  Life will not be the same but that doesn't mean it will be bad.  I have done a lot of traveling...even to Europe...with fibro.  I have been snorkling in the Caribbean and parasailing in Jamaica with fibro!  Just because you have fibro doesn't mean you have to stop living!  You just can't let fibromyalgia control you.  There is always a way of working around it.  So, look around at the many blessings you DO have and don't dwell on the pain.  Focus on things you like to do and the pain will fade in the background some.  You do have a great life ahead of you and we will help you get there.  

 

I'm so glad you are here and I hope to hear more from you soon.

 

Sherrine 

Posted 11/14/2008 3:43 PM (GMT 0)

Hi Deb and a big Welcome!

I almost missed your posts too. I know fibro is not new to you, but the challenges sure can change!

You have found the "best" group to join for support- everyone here understands exactly what your going through and will be here for you!

GamJill

Posted 11/14/2008 5:17 PM (GMT 0)
Deb, you have already gotten so much great advice on here. We are always here for each other through the good and bad times. I'm so glad you joined us.

 

luv and hugs

Marlee

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