Fibromyalgia Thread

[Tinker'n'Fun]

 

[MomToAp1699]

Hi Valerie, I am Diane. I applied for and received SSD. I also have a myriad of health problems which all tie into my Fibro. I highly recommend that you search a few of the Fibro boards and find a Dr. in your area who is a firm believer and treats Fibro. I found with my SSD it helped my case and when I need to re-verify it is the one constant that will never get better. This is for you....

Thank You, there is a arthritis research center here that does studys for people with Fibro and with the symptoms of Fibro. I am just not sure how I feel about testing medications.
Will read some boards and see if I can find a helpful dr in my area!

 

[Fantasyland Mom]

Thanks for the welcome, everybody!

I have to admit that I haven't had time to comb through all these posts, but I wanted to ask a question...has anybody tried a gluten-free diet to help fibro? I know it is an idea circulating around these days, and I was interested to see if anyone has had any success with it.

 

[EDuke98080]

Thanks for the welcome, everybody!

I have to admit that I haven't had time to comb through all these posts, but I wanted to ask a question...has anybody tried a gluten-free diet to help fibro? I know it is an idea circulating around these days, and I was interested to see if anyone has had any success with it.

Hi I am Erika! I have had fibro for years and my daughter was diagnosed with Celiac Disease about 2 years ago. After her diagnosis we did a bunch of research and I decided to go on a gluten free diet as well. Along with curing my IBS symptoms, my fibro has improved 100 fold. I still get symptoms when I don't sleep well or enough but I don't have as much pain and am much more functional than I have been. I seldom have headaches anymore either. I have 2 herniated disks and the pain from them is reduced greatly too. I have read that gluten causes inflamation thorughout the body. Also that if you are gluten sensitive it keeps your immune system in a state of hyper activity causing a lot of gluten sensitive people to have fibro as well. I have been gluten free for a year and a half and have had great improvement in my overall feeling of well being. I do not have an official Celiac Disease diagnosis but I won't go back to eating gluten. I feel so much better than I used to. I always feel it's worth a try but you cannot cheat at all and it takes time, months to really feel the full effect of being off gluten. I also have found that it lifts the fibro "foggy brain" too. You can feel it about wo weeks after completly removing gluten from your diet. The fog lifts and everything seems "clearer" and easier to think. It was a very strange sensation. Just my 2 cents hope it helps. Feel free to ask any questions if you have them.

Tink & Tigg are you ready for your trips? I hope you both have wonderful pain free realxing times!

~Erika

 

[brighteyes]

Today is suppose to be me my first wash/pack day. Needless to say, I am not doing that. This week has been so hard on me. DS14 is breaking me down emotionally. I feel like a failure right now. I always thought having my DD17 would be the hard one, worrying about pregnancies/boys. She was soo easy. No problems at all from her except normal PMS and attitude. I made it through with her. But my son, is killing me here. Seriously, even DH who never ever raises his voice, lunged at him twice last night (just for the fear factor, we don't hit). I don't get teenage boys at all. He is so moody and miserable (unless he gets his way). God give me the strength to let him live until we leave on Saturday!!

Wish me luck. I am going to chill today and start the packing tomorrow. At least I am still a few days out. Thanks, for listening even if you passed through my post, Diane.

Tink - I totally get where you are! A few years ago, before DS and I went on our first trip, we were fighting so bad, I did not even want to go to Disney with him. And in keeping with his misery he was miserable when we arrived at Disney! I mean WHO in their right mind is grumpy when they are going to Disney the first time?? MY SON, That's who. lol And I skipped a few days at the park and let DS go with my friend cause he was irritating me so much.

Now, it's a little better, but still I want to ring his neck sometimes. We are going to counselling a few time a month cause he just doesnt get that he can't tell me what to do and I can tell him what to do! It's great when the counsellor says to your kid, suck it up, cause that's your mom. But things do get better! Hopefully you will have some R&R and down time that maybe will promote some good times. I am wishing that your trip will be a good one.

 

[brighteyes]

Tigg - I hope you hae an awesome trip too!! I am soo jealous! I wish I was going too!!! I did get a code for free quick service dining until aug 14th but I want the code that's good all year!!

Guys!! I Have almost made it!! @@@ One more big research paper to do and one more test!! I am not worried about the test, but the paper I am procrastinating on!! It is so hard, I don't want to do anymore!!
It's worth 50% of my mark...

My amitriptyline is not available in my dosage anymore, so I am weaning myself off that and my meds, and am going on cymbalta. Hopefully I will not have dry mouth and hopefully can lose some weight when I go off these meds.

Can anyone tell me about cymbalta? I am scared of the pain that will come when I go off my meds.

That's all for now, I hope you are all doing better, and pain free...

 

[tiggspring]

Tigg - I hope you hae an awesome trip too!! I am soo jealous! I wish I was going too!!! I did get a code for free quick service dining until aug 14th but I want the code that's good all year!!

Guys!! I Have almost made it!! @@@ One more big research paper to do and one more test!! I am not worried about the test, but the paper I am procrastinating on!! It is so hard, I don't want to do anymore!!
It's worth 50% of my mark...

My amitriptyline is not available in my dosage anymore, so I am weaning myself off that and my meds, and am going on cymbalta. Hopefully I will not have dry mouth and hopefully can lose some weight when I go off these meds.

Can anyone tell me about cymbalta? I am scared of the pain that will come when I go off my meds.

That's all for now, I hope you are all doing better, and pain free...

Bright it is so good to see you!!!! Your amazing doing all that! My childhood friend and her dd5 are here so I'm a little busy but she is a help with my fibro so its all good. Gotta buy stuff this week and hopefully be 80percent packed next weekend so I can sleep everyday from 9-1 before our trip, work in some pilates and I should be good to go. Means mom has to come first everyday for 3 weeks.

Pain free vibes to all!

 

[brighteyes]

. Means mom has to come first everyday for 3 weeks.

Pain free vibes to all!

Got that right!! Have an awesome trip, take care in the meantime.

 

[brighteyes]

Ok all, I am sorry I have not been around to encourage and provide suppport but I really need to vent because no one will understand.

Today at placement, I had my professor come and do my review. I have an amazing supervisor and she is aware of my fibro - how can she not! LOL She sees me go up and down the stairs like an old lady she knows when I am having a bad day. She gave me all 10's however told my prof that I need to not work full time or have acoomodations made for me at my job. Which is understandable cause I agree, which is why I am applying for provincial disability. Allows me some $ assistance because I am only able to work part time and need to rest up for quite a while due to the toll school has taken on me the last three years. She did not spring this on me, she talked to me before and asked how to broach it with my prof so as not to put me in a bad light. She said I am very good at what I do, as long as my health doesn't steal my light and energy away, which she said, she has seen me fade away because she has seen me through the year slowly get worse. This is also taking into account 8 days absent for the year plus some days off school.

Now last year, my prof and I got into it because I told him about my illness at the suggestion of my disablility counsellor at school. My prof said he had seen me slipping and I should get it together. At which time I informed him of my disability and how it affected me daily. To which he responded to, well it's not like this is new to you, so keep an eye on those absences. I should also note that I average in the 90s with one of my courses per year a 79 or 80. I have kept these marks for three years.

Which I think is pretty freaking good considering I feel like sludge on the bottom of a truck tire on a good day, and have been dragging my *** around school until i can come home and sleep. So all things said, I'm pretty freaking proud of myself.

Anyways, I am just really sad that it has been that noticeable by someone else that I am not able to effectively function to the best of my ability. I have got rave reviews about the work that I am able to do. I was planning on applying for disability anyways, but it just makes me sad that someone else said it out loud. And my supervisor told my professor he has to care and understand when people have limitations due to "invisible disabilities". His thing is it is "Not my problem" because an employer will not care WHY I cannot do my job, just that I cannot. I told him that I am (EDIT HERE) NOT stupid enough to think that I can go out and start working 1o hour stress filled days. I laughed at that. I told him after I sleep for about 3 months, then maybe I might be able to work part time.

I mean I know my limitations when it comes to applying for a new job. He didn't want to me to go apply for a full time job and not tell them I have limitations and then get fired or something. I said I have a choice when it comes to my life, but in school we don't have a choice, or we are threatened with getting kicked out if we cannot do what we are supposed to. I told him I didn't have a choice.

So in the end, I think my supervisor helped him understand a little better, and he wasn't a complete *** about it. I am just sad that after busting my *** for three years my health has declined to the point I cannot right now work full time if I wanted. It is also sad that my supervisor notices how completely exhausted I am and that I just cannot do this full time. It is just sad to hear someone else say it out loud, that it is not just me thinking it, that it really is noticeable and affects my quality of work.

My supervisor said better to be awesome at your job one or two days a week than so so five days a week.

Just feeling really sad, that I finally made it, but at what expense? That I live to go to work so I can come home and feed my child salad for dinner and fall asleep as soon as I sit down on the couch.

Sorry for the book if you have made it this far.

 

[EDuke98080]

Bright,

It sucks when we have to face our limitations square in front of someone else. By completing school you have prroved that you CAN do whatever you have to do to get it done. Yes, we with fibro have to face that on the days, weeks, months etc that we have to push ourselves that we will face the consequences at some point in the form of inability to function to some degree. I think you should be super proud of yourself! Take the time for you to get back on your feet and then figure out how much work you can manage on a regular basis that won't make you pushed to the brink. You have done so much and are capable of so much. I am proud of your determination and acomplishment.

~Erika

 

[tiggspring]

Bright

Eduke is right! Right now focus on what you have accomplished it is Awesome!!!!!!! You need to give yourself a chance to enjoy this moment for what it is... a job well done. You also have shown your son when faced with a challenge you go over, under, around but you never give up! Is there anything more important that a parent can teach a child?

I completely understand how you feel about the job though. For those of us in the helping professions it is often more of a calling than a career we are driven to go out and help. The downside is that for those of us that are affected by stress the jobs often become unmanagable. I still feel sad that I cannot go back and help "my kids" I was really good at it. My supervisior used to tell me counseling was like breathing for me. The fact of the matter is I can never go back. I might be able to work some day but I will never be able to tolerate the stress in mental health unless I have a full cure. You have shown that you can do the work just in smaller bites. Nothing wrong with that. Your experience will also make you better at your job in many ways. Abilities that do not require energy but Wisdom which Fibro has given you in spades.


Give your self til June to celebrate this victory. There is plenty of time to deal with the future but we all have to live more in the moment or we miss out on the Joy. Once classes are done, take a few weeks to live in the moment and feel the joy you have EARNED IT! Isnt that what you would tell somone else to do? If we all could only take are own advice

Sending pain free vibes, pixie dust and Joy to you all

 

[brighteyes]

Thanks EDuke and Tigg,

Yes, calling this profession is, not a job. I have been wanting to do this for over 20 years, so to finally have done it, and realizing that i have limits is frustrating, cause I am so finally happy that I am doing this. My body needs to keep up with my heart.

I am really shedding some tears right now. You are so right, I should be happy and I am for accomplishing what I have. I guess I just didn't accomplish it as well as I thought I did. But who the hell cares, right? I mean dragging yourself accross the finish line is still finishing, right? I shouldn't let my prof take that away from me.

Ya, I guess I felt like I had that pride taken away. And thinking I made the choice to work only part time felt better than realizing I have to only work part time. Just a little unsettling. But hopefully after some rest, I will be feeling a little better and be able to judge how much I can work.

It's just so difficult to try to explain it to those who don't understand. My prof said go to your dr. and ask him "What can I expect to do?" I tried to tell him that this is something that is unpredictable or something that is not the same for everyone, so really that is something my dr. cannot really answer for me. I jsut have to see how it goes.

But thanks guys for the "reframing" of my thoughts. It just kinda made me sad to realize I do have limitations. Even though I already knew that.

What a support this board is, I thank god for it. I really hope you know how much your responses really did help me tonight. It has meant a lot to me, and I hope someday I can return the favour.

One more class tomorrow, one more test on friday, one more paper due in a week. Placement next week to make up my sick days. AND THEN I CAN SLEEP till the cows come home.

Now I am off to bed at 11:20 pm - who would have thought me to bed so early? Hopefully, I can sleep.


P.S. I jsut have to say, that those of you who live day to day without meds - I don't know how you do it, I am a mess and I am on meds that make me 100% better. So kudos to you that you are even functioning.
Stephanie

 

[dolphinrescuegirl]

:

My amitriptyline is not available in my dosage anymore, so I am weaning myself off that and my meds, and am going on cymbalta. Hopefully I will not have dry mouth and hopefully can lose some weight when I go off these meds.

Can anyone tell me about cymbalta? I am scared of the pain that will come when I go off my meds.

I had to comment about the cymbalta. I was in extreme pain constantly before I was finally diagnosed with fibro. Once she figured out what was wrong, she put me on cymbalta. This was an absolute godsend!!! Before I couldn't get out of bed and was constantly in the ER from the pain. Once on cymbalta, the pain went totally away! I was finally able to get out of bed and lead a somewhat regular life. Cymbalta is the best thing ever invented!!!! I've been on it for about 4 years now. Good luck and I hope it helps you as much as it helped me!

Does anyone here also suffer from chronic fatigue syndrome? This is what is causing me the most problems now. I had tons of Vit-b injections and still take a vit-b pill, vitamin d pill, and I am about to start coq-10. I am also having trouble sleeping at night. I used to take ampitryline (sp) but that quit working so I took unisom over the counter but that doesn't work well. I also have tried mid-nite but you have to let it disolve and it tastes like chalk. I tried to swallow it whole but then it won't work. I would love to hear how anyone else with this deals with this. Thanks!

 

[brighteyes]

I had to comment about the cymbalta. I was in extreme pain constantly before I was finally diagnosed with fibro. Once she figured out what was wrong, she put me on cymbalta. This was an absolute godsend!!! Before I couldn't get out of bed and was constantly in the ER from the pain. Once on cymbalta, the pain went totally away! I was finally able to get out of bed and lead a somewhat regular life. Cymbalta is the best thing ever invented!!!! I've been on it for about 4 years now. Good luck and I hope it helps you as much as it helped me!

Does anyone here also suffer from chronic fatigue syndrome? This is what is causing me the most problems now. I had tons of Vit-b injections and still take a vit-b pill, vitamin d pill, and I am about to start coq-10. I am also having trouble sleeping at night. I used to take ampitryline (sp) but that quit working so I took unisom over the counter but that doesn't work well. I also have tried mid-nite but you have to let it disolve and it tastes like chalk. I tried to swallow it whole but then it won't work. I would love to hear how anyone else with this deals with this. Thanks!

Thanks for the info on cymbalta. I am starting to wean off lyrica next week.
Lyrica was a godsend for me when I went on it two years ago, but bit by bit, the pain is coming back.

I do not know if I have CFS. But exhaustion that comes with fibro is the worst for me. I really only have energy to stay awake for about 4 hours. Trouble sleeping? All the time. Let's see, with amitriptilyne I was up till about 3 am last night woke up at 8:30 back to bed for cat nap at 10 -11 back to sleep at 1130 - till 1230 back to bed again at 1:30 till about 530. So exhausted all day, yet can't sleep again.

I fight every day to keep my eyes open, yet can't sleep at bedtime, and that's on 5 or 6 hours sleep and no nap, I am still awake for about 20 or so hours.

I can't offer any help, but am right there along with you. It is now 2 am and am crosseyed from being tired, but can't sleep. I just don't get it at all. Sorry I can't be of more help.

Here's hoping that you are sleeping soundly right now.

Stephanie

 

[tiggspring]

Thanks for the info on cymbalta. I am starting to wean off lyrica next week.
Lyrica was a godsend for me when I went on it two years ago, but bit by bit, the pain is coming back.

I do not know if I have CFS. But exhaustion that comes with fibro is the worst for me. I really only have energy to stay awake for about 4 hours. Trouble sleeping? All the time. Let's see, with amitriptilyne I was up till about 3 am last night woke up at 8:30 back to bed for cat nap at 10 -11 back to sleep at 1130 - till 1230 back to bed again at 1:30 till about 530. So exhausted all day, yet can't sleep again.

I fight every day to keep my eyes open, yet can't sleep at bedtime, and that's on 5 or 6 hours sleep and no nap, I am still awake for about 20 or so hours.

I can't offer any help, but am right there along with you. It is now 2 am and am crosseyed from being tired, but can't sleep. I just don't get it at all. Sorry I can't be of more help.

Here's hoping that you are sleeping soundly right now.

Stephanie

I was awake all night too. Feel AWFUL today.


dolphinrescuegirl Im an diagnosed with CFIDS, FMS, complicated migraines and chronic toxoplasmosis The fatigue is the worst thing to fight off for me.

 

[brighteyes]

I AM DONE!!!!!!!!!!! last paper handed in today, tomorrow morning is my last day of placement. Today, my three girls I counsel gave me homemade cards and cried.

I also encountered an "ethical dilemma" while at placement today. A year one student from my same program just completed her 5 weeks of placement at the same school. She was pretty chummy with the Child Youth Worker. So one day I came into work and there were a few of my workpages for children that I created on the computer. I thought no big deal, maybe the year 1 student used them with the children. I was a little miffed but said nothing.

So yesterday, I am using the CYW's office to finish up a social skills group with a boy who missed a day. Well don't I see on top of his file cabinet ALL my worksheets that I have created over the past months to use in my social skills groups or with my individual girls!!! AND a complete layout of my group that I created for the social skills group.

So I speak to my supervisor, becasue these documents I created on her computer. The only person who had access to her computer is the year one student, and me. So she goes to the CYW office and sees them and asks "What are these?" The CYW says, "Those are mine to work with the children." My supervisor says, "Those look like Stephanie's sheets." So then he says, ya, they are hers.

So now, on my last day I have to confront him and ask him where he got them. Even though I know damn well where he got them. I also called to book an appt. with my proffessor to tell him about this unethical behaviour of this year one student. After I speak to the CYW I will confront the other student.

It is not the fact that he wanted to use them, I would have given him copies, but I spent hours, days, weeks resourcing material for various topics. Additionally, my groups proff told me I should copyright the social skills group and market it and sell it. I asked the CYW if he would like to do that with me, since he created the theme of the group. I am so upset because I put so much work into creating these sessions and topics and activities and for him to conspire with the year one student to steal my work. I was under the impression that the year one student just gave it to the CYW and claimed it as hers. Yet, I find out to my amazement and dissappointment that he knew it was mine. The reason I am upset also is that I did not use all of these ideas/intervention and educational materials in the group because I had to adapt to the boys cognitive level, but this is stuff that I could have used to wrk with other kids.

I am soo disappointed... and scared because now I have to confront this CYW about how he came to have my work. I just cannot believe. Like seriously, that is brutal.

So I am dealing with this on my last day, I am in soo much pain today, been laying on the couch for two hours trying not to move a muscle. And I haven't even started weaning myself off these meds yet. I hope I am feeling better tomorrow.

I also got inside info about applying to our Board of Education but cannot do it tonight I am so much pain. It takes about two hours to complete the process, but will do it this weekend.

I hope ou are all feeling well.

Tigg, what is CFIDS??

 

[tiggspring]

Tigg, what is CFIDS??

CONGRATULATIONS!!!!

keeping it short cause I'm finishing packing etc and it has been way to stressful here. Bright -DH said that you need to go to the dean and inform them that this student commited plagiarism. I hadnt thought of it that way but DH says thats the way it sghould be looked at by an acedemic program because these things are used as the basis of programs, books and trainings. All of which could make you some good money. I'll send you his e-mail in a PM if you would like. He has been on several ethics committees and as Pa's President of NASW (national association of social workers) has had to handle many ethical delemias with memebers.

BTW CFIDS is Chronic Fatigue and immune difficency disorder which is the old term (showing my age)



dolphinrescuegirl:

I have had some success with meletonin half a 3mg pill. If i take it too many days in a row I get wicked leg pain at night. But when I do take it I tend to lose weight!

Oh I have lost all the weight I gained last year minus one more for a total of 33lbs since Dec. Dont ask me why I started losing back then or why suddenly a caffine free, mostly carb free diet works now but not last june through sept when my weight stated to go through the roof again. People are starting to say hello to me a look me in the eye when I'm out....this is the fourth time in 15 years I have gotten back down to a chunky but normal weight again 14/16. Each time people start to notice my existance. Dont know if I should be happy or angry for all those years I'm invisable oh for the good old days when I felt fat as a size 8-10

So much for keeping it short. At least my tagline fits

Sending Pain free vibes and pixie dust to all

 

[Indiana Rose Lee]

Great job getting through it, Brighteyes!!!! Enjoy a nice break!!!

tiggspring, have an awesome trip!

 

[brighteyes]

CONGRATULATIONS!!!!

keeping it short cause I'm finishing packing etc and it has been way to stressful here. Bright -DH said that you need to go to the dean and inform them that this student commited plagiarism. I hadnt thought of it that way but DH says thats the way it sghould be looked at by an acedemic program because these things are used as the basis of programs, books and trainings. All of which could make you some good money. I'll send you his e-mail in a PM if you would like. He has been on several ethics committees and as Pa's President of NASW (national association of social workers) has had to handle many ethical delemias with memebers.

BTW CFIDS is Chronic Fatigue and immune difficency disorder which is the old term (showing my age)

:

Tigg, I know it is unethical, that was my whole thing. I am going to my prof on Monday morning. He respects my supervisor, that is one thing I have on my side. This is the same prof that I had the meeting with about my disability I know it was this student, I don't know whose idea it was, but he knew exactly what was happening. I had a bad feeling about her but kept an open mind in the name of being a social worker and not being judgmental, but my instincts were right.

The problem is there is NO proof HOW the CYW got my documents. I confronted him today which was very hard. I asked if I could talk to him and say goodbye since it was my last day. He avoided me for almost an hour, then said let's go downstairs cause there was a party for the student teachers, and I waited and asked him if we could talk.

We went upstairs where he stood talking in the hallway for half hour with me just standing there. Finally, we go in his office, and I aif I can have his email and if he is still interested in trying to market this program. I told him I could have just taken this but the theme is your idea and I came up with the educational part, so I feel I should include you. He said yes, over the summer he would be interested in pursuing this. Now, do I want to go into business with this guy, no way. But do I want him making money off what I contributed most of the work for creating this group. No way, so if I can be a part of this, rather than have it taken from me, then I guess I have to keep my enemies closer.

Then I say, I just have one question for you before I leave. ---- told me that some of my worksheets were here. I was wondering how you got them. To get my supervisor off the hook, I said she told me how nice it was to share my work with you, but I was wondering how you came to have these if I did not give them to you.

He looked SOOOO uncomfortable, and said they were just left here I thought they were left here for me. You can have them back. I said no, I don't mind you having them. I just find it strange since I didn't give them to you. If you had asked, I would have no problem. I told him that I also thought it was funny that when I came into work one day that my stuff was sitting on the printer. It was recycled cause it had been printed on the wrong paper. He immediately said I never went on ----- computer.

He stammered and said thank you, you are always welcome to any resources I have. I figured he has already seen them and looked at them, and been watching me do the group, so I let him keep them.

So now that he has not told me that the first year student gave him the papers, I have no proof. I will tell my proffessor however, and tell him that the other student had access to the computer. My supervisor will also talk to my professor and tell him what she knows that this guy said the sheets were his.

I am extremely disappointed, and shocked really. I confronted him, perhaps not as angrily as some think I should. And to top it off my supervisor was not there today, so that kinda sucked.



I will keep you informed Monday what happens. Thanks for the offer of hubby's email.

Anyway, I just wanted to let you know I confronted him, but not agressive, my Dad told me to be curious not furious. lol I was furious though but I have to show respect for my Program and not be screaming at my placement coworkers. The main thing is he knows I know he had my stuff and that I did not give it to him. After I speak to my prof, I will confront this girl, and then if nothing is done, I will go to the dean, and possibly the ethics committee.

I have to go now cause I am in a world of pain even with doubling my meds the last few days. I have not had a flare this painful since Christmas.

Enjoy your trip I am so jealous, I want to hear all about it when you get back.

Stephanie

 

[brighteyes]

I am sorry for all my rantings on this board about my social service issues.

I do have a question for my fellow fibromites

Recently I have been having more issues with my legs. I have been getting extreme painful pins and needles in my legs when I am going up or down stairs as my foot touches the ground, I get pins and needles sensation from my foot going up my leg.

Has anyone else had ths happen? I am wondering if this is fibro related or possible diabetes related. I have been borderline for pre-diabetes for years, but not pre-diabetic yet.

Thanks.