fibro

[sallyb]

Guess there aren't any people with fibro????? Guess you are all at the chronic pain site. I would like some to come to this site since I do not understand all sorts of pain.

I have had fibromyalgia since 1983, and at one time, amitryptelene (Elavil) took care of the pain. Since that time, I have been through a miriad of pain killers, anti-inflamitories, and muscle relaxers without much help. Since amitryptelene grew to an unhealthy amount, not one single thing has been helping me with pain, but my doc just doubled my dose of Ultram. Not sure if it is helping, or if I feel so drained that I don't care. Any suggestions?

sally

[Fayelle]

Hi Sally,

Actually there are lots of fibromites, its just that the site took a massive dive and just barely made it back up...Evidently it lost all the posts too hehe....

Welcome!

Personally I live with a good amount of pain on a daily basis and just accept that I am going to have a certain amount of pain....I am exceptionally careful about pain relievers since my family is laced with addiction factors....Tylenol3 will take the edge off for me....And I have had some luck with flexeril although I think I need to revisit that with the doctor....

I think fibro management is about treating underlying disorders and being as scheduled as possible in order to get appropriate amounts of sleep, and not having significant blood sugar fluctuations....Etc...

Hopefully some of the other members will be back in soon with the site being back.....There were a lot of well informed fibromites on this site.....

Fay

[uvamomb]

Hi, Sally,

I have Fibro among many other diagnosis - Chronic Myofascial Pain and Dystonia being a couple. It seems like the most help I get is fromr my physical therapist who is trained in and does trigger point release and dry needling. Recently my pain got so bad we had to double my oxycodone and changed my breakthrough to Percocet. Xanaflex is an amazing muscle relaxer. I also see a psychiatrist to help me deal with the chronic pain. Cymbalta, an antidepressant was an amazing drug that helped a lot until I had the reaction that generally happens 6 weeks into treatment and had to come off it.
If you can take it, get it; it is truly amazing. It's hard for me to separate my different meds for different ailments, but Gabitril helped a good deal with the compression. Nothing helps with the DDD - nerve pain, so had surgery on C/4 and C/5 in June. Helped that one spot, but rest of spots still kicking. Heat alternating with cold really helps me, too.
Sorry to ramble, but wanted to get this to you ASAP. I hope some of this helps.
I do stress the Trigger Point Release and Dry Needling and the Gabitril and the wonderful Cymbalta.

I hope you find relief soon. I know also that we can have underlying conditions that keep us from feeling better. I've had my share of those, too. Make sure you never assume it's just the fibro. Have everything worked up.
ALSO, REALLY BIG - HAVE YOUR VITAMIN D CHECKED - MINE WAS NON-EXISTENT. ALSO, HAVE YOUR B12 CHECKED BY A PHYSICIAN WHO KNOWS WHAT HE'S DOING AND IF YOU CAN'T FIND A DOC KNOWLEDGEABLE WITH B12, GO TO VITAMIN DEFICIENCY FORUM AND TAKE ROSE'S ADVISE AND ASK HER QUESTIONS. GET A COPY OF THE TEST SO YOU HAVE THE READING, DON'T EVER TAKE AN "it's okay" FROM ANYONE. GET THE NUMBER AND CHECK WITH ROSE ON VITAMIN DEFICIENCY FORUM.
BET YOU DIDN'T BARGAIN FOR ALL THIS INFO. SORRY IF I GOT CARRIED AWAY. FEEEL BETTER SOON.
Hugs,Kathy:)

[Aja]

Hi Kathy,
I am not new to the messageboard, but I am new to the Fibro section. I see you took Cymbalta until a bad reaction. Do you mind telling me what it was?
I am on my 3rd week with it. Too early to tell if it's going to help. I live in New England and the climate changes are hard to take. I've have Fibro for 5 years, but it was misdiagnosed for the first 4.

Aja

[uvamomb]

Aja,

I started swelling and having trouble getting rid of my urine, if I recall correctly. I ended up at a urologist's office and he knew all about how great a drug Cymbalta was, but also knew that the particular reaction I had usually comes around the 6th week of being on the drug. I hope you can take it.

Take care and lots of hugs,
Kathy

[Aja]

Sally,

Thanks for the info. One more question - What dosage were you on? I'm currently at the minimum dosage, but it's been 2 weeks and my Dr.wants to increase it. My daughter gets married in a week and I am worried about having problems during the wedding week and am thinking of posponing the increase until after the wedding. It is not currently helping me with the FIBRO.

Thanks in advance!

Aja :)

[DKCharlie]

I have fibro too. I take cymbalta and zanaflex and go for regular B12 injections. Sometimes I'll take T3 but it doesn't help much.

Not perfect but I'm hanging in there for now.

[Debiyomama]

Hi.. I too have Fibromyalgia due to an on the job injury in 1999 I have herniated disc and after I developed the Fibro. I Know for a fact that there are many 'underlying' reasons for the pain.. one of mine was the stress from dealing with Workmans Comp.:( and the attorneys and the financial hardship I was going through after the injury. Also I was given P.T before they even knew I had herniated/bulging disc and it only made it worse.. they were treating me for 'Sciatica'.. So if we can keep our stress level down it would help the pain.. but how do you do that when you're in pain.. that alone drives your stress level through the roof. I have been on so many medications I am 'sick' of them and the side effects are worse than the ailment they are supposed to be helping... has anyone heard of '5HTP' ? What is it and does it work? Now I am on disability and looking forward to having a procedure done called "Xstop" to aleviate the pain in my lower back.. I have spinal stenosis also and this is supposed to really help the pain which in turn is going to bring down my stress level and hopefully calm down the fibro pain.:) I read one persons post on hard it is for us when other people don't understand our pain.. it's not a 'physical' disability like an amputated leg or something that can easily be seen and that is the worse part because it's true sometimes people think your'e lying or looking for sympathy or just lazy. I have stopped trying to make others understand that just adds to my stress. So if anyone has heard of "5HTP" let me know the 411 on it okay?

[Fayelle]

I have been giving this issue a lot of thought Debi.....

I don't think in all honesty that currently my pain relief is going to come in the form of medication without causing typical problems associated with pain meds....

I also know last time I mentioned any of this I got ripped on for thinking there were alternate things to handle pain and pain meds needed to be used carefully.....

In my opinion I need to learn to cope with certain levels of pain which I have done....emotionally as well as stress related....I have learned that getting upset only makes my pain that much worse so I have to take myself away from thinking all pain needs to be killed....I have also learned not to let others make a difference on my pain validation....I don't need anyone else to validate how I feel for it to be there.....

This does not mean I don't use pain meds I just use them VERY sparingly....Some have accused me of not having as severe of pain as some others and therefore I do not know of where I speak....The difference being I have dealt with this ever since I can remember, since childhood....All without being believed and all without pain meds until the last 18 months or so....

Sometimes pain relief is a state of mind, and ability to take some control of your mind and your ability to deal with the severity of pain....Childbirth is very painful and one thing I found to be true was that out of the 3 times I did it the most fullfilling for me was the one where I went without pain medication, except for a local anesthetic for my vaginal area during the final stages of birth.....The difference being my state of mind....

I am starting to look into meditation, acceptance, peace of mind, and a release of fear. I no longer fear my health in most cases therefore my anxiety has lessened...I have also accepted that this is my life, this is where I am in this life and therefore it is what it is....Getting upset wont change it only makes it more miserable.....My pain has yet to kill me, sometimes in my past my hand almost killed me due to pain and depression.....But the cause never changed, my state of mind is changing.....I still have a good life, I have people who love me, children who depend on me, and things that I have difficulty caring for due to something outside of my control....i cannot control this thing and therefore I have to accept its presence and deal with it accordingly.....

I could sit around and continue to grieve for what could have been or was or never will be again, but that wont get me anything but more pain.....Tomorrow the sun will rise, tomorrow I will wake up stiff and tired. Tomorrow night my neck, upper back, and spine will ache like it wants to explode.....This I can count on.....Do I want to slip into a crack and cry for myself? No I want to climb up regardless of the pain and be someone, something, and active in my own life....I refuse to be a slave to my pain.....I can sit in bed and cry, or I could get up smile and play a game of yahtzee with my family, either way I hurt....Which way do I want to be remembered? What will I miss in my self pity?

Now let me write a disclaimer before I get into trouble.....This is my attempt to take my life into my hands, not a condemnation of how any one else chooses to deal with this.....Every I statement really pertains to me and no one else.....This is my frame of mind about me.....Just because it is my choice and decision does not make me think it should be everyone elses....

This is my thought process on what you are talking about Debi.....

I think I am finding my ok spot with this thing...I hope you find yours!

Fay

[MichelleC]

I have been giving this issue a lot of thought Debi.....
....
In my opinion I need to learn to cope with certain levels of pain which I have done....emotionally as well as stress related....I have learned that getting upset only makes my pain that much worse so I have to take myself away from thinking all pain needs to be killed....I have also learned not to let others make a difference on my pain validation....I don't need anyone else to validate how I feel for it to be there.....
....

Sometimes pain relief is a state of mind, and ability to take some control of your mind and your ability to deal with the severity of pain....Childbirth is very painful and one thing I found to be true was that out of the 3 times I did it the most fullfilling for me was the one where I went without pain medication, except for a local anesthetic for my vaginal area during the final stages of birth.....The difference being my state of mind....

I am starting to look into meditation, acceptance, peace of mind, and a release of fear. I no longer fear my health in most cases therefore my anxiety has lessened...I have also accepted that this is my life, this is where I am in this life and therefore it is what it is....Getting upset wont change it only makes it more miserable.....My pain has yet to kill me, sometimes in my past my hand almost killed me due to pain and depression.....But the cause never changed, my state of mind is changing.....I still have a good life, I have people who love me, children who depend on me, and things that I have difficulty caring for due to something outside of my control....i cannot control this thing and therefore I have to accept its presence and deal with it accordingly.....

I could sit around and continue to grieve for what could have been or was or never will be again, but that wont get me anything but more pain.....Tomorrow the sun will rise, tomorrow I will wake up stiff and tired. Tomorrow night my neck, upper back, and spine will ache like it wants to explode.....This I can count on.....Do I want to slip into a crack and cry for myself? No I want to climb up regardless of the pain and be someone, something, and active in my own life....I refuse to be a slave to my pain.....I can sit in bed and cry, or I could get up smile and play a game of yahtzee with my family, either way I hurt....Which way do I want to be remembered? What will I miss in my self pity?....

I think I am finding my ok spot with this thing...I hope you find yours!

Fay

Fay, thanks for the inspiring words. I was diagnosed with fibro less than two weeks ago. For the first week I was so very depressed. I went to the doctor because I wanted to be fixed! He put me on meds, and my pain got worse. I am trying to accept my limitations, and still have hope for the future. If this diagnosis is true for me, then I can look back and see many things which have happened, since age 16, that were the beginnings of fibro. The last two years have been bad, yet the pain suddenly became worse two months ago.

I really identify with your words that I placed in bold. Thanks for sharing.

Michelle

[egcosen]

Hi Sally,
I had suffered from fibromyalgia, chronic fatigue syndrome, asthma, allergies, and GERD that came on very suddenly 3 years ago after a series of some unusual occurrences. Thought I was just dealing with a yeast infection, since they had found it growing in my esophagus when scoped. Tried many things, such as: co-enzyme 10, Sam-e, St. Johns Wort, and magnesium. Monitored my carb intake, performed yoga, exercise the best I could, and tried to get enough sleep. I felt like one of my congestive heart failure patients. Had accepted the disease and felt I must just deal with it the rest of my life. My mother also has it, but not as bad. Than I was suddenly introduced to this juice, for which I was not willing to buy. So the man gave us a bottle free. In 3 days my symptoms of all the above were gone. I still have some discomfort in my shoulders, but it is bearable. Please check out www.mymonavie.com/cosentino and read The Story and My Story from the website. Keep in touch. Elisia

[Tootsie]

Fay, I can identify with everything in your articulate and well written post of your progress through living with this condition. I refuse to call it a disease!

As you may know, but others do not, I have had fibromyalgia for almost 50 years. During those first years, I too, hovered over the phone awaiting the results of the latest lab tests, anxiously tried every new medicine that my very able and compassionate doctor prescribed, and eventually abandoned it all. The lab tests were all normal. The medications sometimes had advantages, and provided some relief but the side effects and complications of use, did not balance that benefit.

Eventually, I learned that adequate sleep and rest, the elimination of stress, a normal, healthy diet with regular balanced meals, and exercise was the therapy and treatment that was needed. Sometimes I take aspirin for aches and discomfort if it is interfering with falling asleep. Life revolves around my fulfilling my own needs, for those things. Children have grown and flown.
I was able to work, part time for 20 years.

I, too, need to state that this has been my own experience and it has worked well. Medications simply are not tolerated well by my body. I can't even drink coffee of colas that have caffeine. I would encourage anyone recently diagnosed to find their own comfort zone in the various things that have been known to help.

In the old forums Crazy 8 had posted a list of all the treatments and therapies that were mentioned as being helpful. New members might want to check that out. Cheerio.

[Debiyomama]

I have been giving this issue a lot of thought Debi.....

I don't think in all honesty that currently my pain relief is going to come in the form of medication without causing typical problems associated with pain meds....

I also know last time I mentioned any of this I got ripped on for thinking there were alternate things to handle pain and pain meds needed to be used carefully.....
In my opinion I need to learn to cope with certain levels of pain which I have done....emotionally as well as stress related....I have learned that getting upset only makes my pain that much worse so I have to take myself away from thinking all pain needs to be killed....I have also learned not to let others make a difference on my pain validation....I don't need anyone else to validate how I feel for it to be there.....
This does not mean I don't use pain meds I just use them VERY sparingly....Some have accused me of not having as severe of pain as some others and therefore I do not know of where I speak....The difference being I have dealt with this ever since I can remember, since childhood....All without being believed and all without pain meds until the last 18 months or so....

Sometimes pain relief is a state of mind, and ability to take some control of your mind and your ability to deal with the severity of pain....Childbirth is very painful and one thing I found to be true was that out of the 3 times I did it the most fullfilling for me was the one where I went without pain medication, except for a local anesthetic for my vaginal area during the final stages of birth.....The difference being my state of mind....

I am starting to look into meditation, acceptance, peace of mind, and a release of fear. I no longer fear my health in most cases therefore my anxiety has lessened...I have also accepted that this is my life, this is where I am in this life and therefore it is what it is....Getting upset wont change it only makes it more miserable.....My pain has yet to kill me, sometimes in my past my hand almost killed me due to pain and depression.....But the cause never changed, my state of mind is changing.....I still have a good life, I have people who love me, children who depend on me, and things that I have difficulty caring for due to something outside of my control....i cannot control this thing and therefore I have to accept its presence and deal with it accordingly.....
I could sit around and continue to grieve for what could have been or was or never will be again, but that wont get me anything but more pain.....Tomorrow the sun will rise, tomorrow I will wake up stiff and tired. Tomorrow night my neck, upper back, and spine will ache like it wants to explode.....This I can count on.....Do I want to slip into a crack and cry for myself? No I want to climb up regardless of the pain and be someone, something, and active in my own life....I refuse to be a slave to my pain.....I can sit in bed and cry, or I could get up smile and play a game of yahtzee with my family, either way I hurt....Which way do I want to be remembered? What will I miss in my self pity?
Now let me write a disclaimer before I get into trouble.....This is my attempt to take my life into my hands, not a condemnation of how any one else chooses to deal with this.....Every I statement really pertains to me and no one else.....This is my frame of mind about me.....Just because it is my choice and decision does not make me think it should be everyone elses....

This is my thought process on what you are talking about Debi.....

I think I am finding my ok spot with this thing...I hope you find yours!

Fay

Fay,
First of all.. for anyone to have 'ripped' on you for making such a statement is totally ignorant!! Because we all have different pains and beliefs and they are 'ours' to deal with as we can and see fit. So any type of 'disclaimer' is not necessary! It is true and a known fact that the medicines that most of us take are 'dangerous' all you have to do is read the insert..and eventually will do more harm than the ailment that they are supposed to be helping. They will do damage to our organs in the long run.. but what can we do? We can 'choose' not to take them and be in agonizing pain or be lost in a pit of depression that can sometimes lead one to consider taking their own lives, 'or' we can 'choose' to take them and live a better quality of life 'or' we can 'choose' to find alternatives whether it be homeopathic methods or whatever... BUT.. they are all 'choices' that we make for 'ourselves' and no one should condemn anyone for it. We all know the h*ll we live with on a daily basis and what makes us feel better and we do what we have to do. And just dealing with that is stress enough without having to worry about what others think is right or wrong.. right? I absolutely believe that STRESS is a huge factor .. and I know from 'my' own experience that aleviating my stress level helps 'me'.. whether it be stress by not getting enough sleep or overdoing my activities when I 'am' feeling somewhat good or dealing with the insensitivities of others who do not understand.. stress is stress no matter where it comes from, self imposed or given. And I totally agree with you about sitting around and grieving about what could have been.. what a waste of time.. I learned that the hard way.. when I was injured I had two jobs and I loved them.. not too many people can say that they love their jobs but I did and I tried to keep on working at my full time job even though on restrictions but I kept on working for two years but it started going down hill or 'I' did..lol.. and they asked me to 'resign' for 'my own good..health wise'.. what a crock. But the depression just about killed me.. and then I decided to concentrate on what I have and sometimes it is hard to keep on that track but I just give myself a good scolding and put an end to the pity party, and relieve myself of more stress too.. :p I don't want to be remembered as a whiner or a quitter and I can't stand when I get that "oh poor Debi" crap.. I know it's well intended but not for me! My kids wanted to take me to the fair last year but I was in bad shape and then they suggested a wheelchair.. boy did I go through the roof:mad: But I calmed down and apologized.. but I didn't go to the fair though.lol And I won't give up looking for alternatives .. no one should.. life is too short and it's what we make of it..this isn't a dress rehersal.. this is it.. with or without the pain.. like you said... we will feel the pain regardless of whether we are layed up in bed or sitting playing a game or whatever.. I'll go for the 'whatever'..:D Sometimes I over do it and than I pay for it for a few days but while I'm recuperating I have some great memories..;) It sounds like you are well on your way to your 'OK' spot if not there already and God Bless you and keep you well.. and I will do as well. Nice exchanging feelings and thoughts with you..:)
Debi

[uvamomb]

Aja, I don't remember what dose I was on. Sorry! It's been so long ago. My daughter recently got married as well. Call your doctor and see if there is something he or she can give you extra for the day of the wedding. Enjoy!
Hope you feel better - I made it through until the toward the end of the reception, but was very thankful for that.
I'm sure it will be a very special day, and Ihope your pain stays in check so you can enjoy it to the fullest.
Kathy

[Aja]

Thanks for your good wishes. The wedding went well, except for the weather (wind and rain as we entered the church and snow when we left). I peservered and enjoyed the day. I increased my Cymbalta the next day and for 3 days I felt like I'd been run over by a truck. A week later, I've finally got through the day withiout numerous naps.I see my Dr next week and I know she'll want to increase it again to 60mgs. I'm a little concerned as to how I will tolerate it, but I know it's not doing anything for me at 40mgs. Wish me luck!

Aja

[ODAT]

He everyone,

The only two meds that have ever helped my fibro pain are Ultram and Lyrica. When I reached the maximum dosage of Ultram and nothing else was available, my doctors added hydrocodone. When Lyrica came out he took me off hydrocodone and ultram and put me on that. It worked great for awhile. Now I'm on the maximum dosage of Lyrica and it is not enough. He has recently added hydrocodone back. I also take one other anticonvulsant, topamax, because I am bipolar; and two antidepressants, zoloft and trazadone. Trazadone is for sleep. I take 100 to 200 mg a night. It is the only thing I have found that can get me to sleep. I did try Cymbalta for a short while. I helped my pain a little. I had to stop taking it because I developed dermatitis from it. My sister and daughter had the same reaction from it. I wonder is anyone else had a similar reaction. My doctor was surprised by our reaction. Pam

[Sunshine2]

I was diagnosed with Fibro but have been denied access to a Rheumatologist, although referred 3 times now....I have no help from the medical community in dealing with this.:mad:

[Clarpa]

I have had fibro for 20 yrs. I believe it started after painful hearniated discs. Over the yrs. I have also developed Interstitial Cystitis, daily migraines, depression, recurrent tendonitis in my legs, severe neck and back spasms, central (CNS) sleep apnea. I found my quality of life much improved with medications. I have tried every pain med, migraine med, anti-spasmodic, on the market. I finally found combinations that work for me and some of them made me worse. You make choices, you must be patient, and you must accept that even with everything you do, the pain and problem is still there. I finallly learned not to care what others think - if they can't deal with my choice to take pain meds, or my illness, they are not healthy for me! Everyone has to find their own fit. I prefer to live my life more fully than worry about a long life being miserable; so if the medications mess up my liver, or kidneys at least the quality of my life is good. Quite frankly, I don't want to live too long if I am in alot of pain and trapped. That is my choice.