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Survivor2007 posted:
I finally saw the pain management doctor that my primary referred me to when he diagnosed me with fibro. I am already on Cymbalta, now this young doctor says I sould be on Lyrica 2x/da in addition to the Cymbalta. I already have an uncomfortable relationship with the Cymbalta...I don't like being on something that even being late with taking the dose starts to give me side effects. From what I am reading about Lyrica, it will do the same thing. Plus, both are pretty expensive. I have the manufacturer discount for when/if I start the Lyrica....but even then, it will be costly for me in my current financial situation.
The young doc has also referred me to a therapy program 3x/wk that includes water therapy, and has also recommended that I see a pain management psychologist. I have yet to find out what the cost will be of the physical therapy.....but if it is my copay for specialist and I have to pay it 3x/wk....that will not happen. I am new to all of this....did not really know what was going on with me until recently due to having dealt with some other health issues. For those of you who have done all of these things that this young doctor recommends....did it help?? Was it worth the time and money? Did it improve your quality of life significantly?
Also, I came down with labrynthitis last week......terrible vertigo, vomiting, nausea. It is a virus in the inner ear. I ended up in the ER....was given meds that kept me sleepy and on the couch for most of last week and this past weekend. Although much, much better....I remain a bit dizzy and touchy with my stomach. I was told it would take 5-10 days for it to clear up. I have a couple of days to go. Well....after that long story.....has anyone here experienced this?? Does anyone know if it is has any connection with the fibro?? The ER did a CT scan of my brain.....and it looks like all is well there (lol...a matter of opinion according to my hubby).
Does the fatigue and self doubt about this illness ever stop?? I am so tired of being tired. No motivation at all. And I keep questioning if this is all about feeling too fatigued and overwhelmed ( don't really know what I am particularly overwhelmed by...but that is the feeling)......maybe I am not sick, maybe I am just lazy.....I should be picking myself up and getting busy....I should be getting focused and getting out and getting back to work.
Enough. I appreciate any responses. Thank you for listening....
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Anon_10089 responded:
Hello--you have many questions and I'm sure many others will pipe in with some responses.

First of all, if Lyrica is too expensive, you could try neurontin. It is older but a similar formulation as Lyrica (but not exactly the same). It can come in generic form(gabapentin). Just a warning: many people gain weight on both Lyrica and neurontin. That being said, it is not 100% positive that you would. Also, some people get so much benefit from either med that even if they gain some weight, they're okay with it.

I have never done physical therapy, but I do workout very regularly. I think PT can be benficial, especially water therapy, but your therapist must be knowledgable about FM. Many people have posted here that their therapist pushed them too hard and they ended up in more pain. Exercise can make symptoms worse, but I find there is a hump to this and I end up feeling better overall when I'm exercising. I feel great during, feel great for about a half hour after, have very bad pain for a few hours after, but then overall feel better the next day.

The fatigue can get better but many people report here that even when their pain is more controlled, they still have fatigue. My fatigue is helped when I get sleep--which is always aided by meds, get exercise, and eat low sugar/low carbs. Also, I have taken wellbutrin in the past. This is an antidepressant that is not used for pain relief, but it did help me have more energy and less fog.

The self doubt part is a tough one. We've often talked about here that accepting FM is akin to going through the grieving process. I think once you've processed what FM will mean for your life, you can start to accept the changes it necessitates and can let go of guilt. A pain psychologist could probably really help you process this. They can also help give you practical ways of dealing with the pain. I think their goal is to help you accept that you will not be pain free, but that you can still have a life.

This forum is one of the best resources for FM that I've seen. You can read through past discussions and look at what Dr. Pellegrino has had to say. I'm sure more people will respond with more suggestions!
 
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dollbug responded:
Hello Survivor and welcome...MiMi in NC...don't worry...everyone who joins this unique FM support group comes with loads of questions and concerns....you have found a good place though and I am sure that soon you will find something that will help you cope better...

I think we all go through the doubts in the beginning....and everything becomes a *process*....as we are all different and what works for one may or may not work for you. The doctors will try lots of *things* which may or may not help...they are only guessing....as the rest of us FMers are as well...no one really knows what might help us. If you have had issues with the Cymbalta, then I would certainly be careful with adding something else, especially if you are not even sure yet whether or not the Cymbalta is helping. I will say this much....it takes around 6-8 weeks or so for a person to get the full effects of whatever they are trying...sometimes things work faster for some of us and sometimes it might take the full 8 weeks or so before you can truly *feel* a difference.

I guess what I am trying to say....it really is NOT a good idea to start a lot of *things* at once. I only say this so you will know IF and WHEN something is really helping...instead of trying to figure out what caused a difference, whether good or bad.

I am one of the oldie goldies here....and in the beginning I had multiple health issues, as do many of us....in having so much going on at one time, it is extremely hard for the doctors to figure out what is going on with us as well. My doctor seemed to think that I was *just depressed*....and this is what he was treating me for. I tried different medicines but did not seem to get any better, actually a couple of times I got worse. Eventually, I did my own research on how I felt, my symptoms and took my *thoughts* to the doctor....who by the way did not agree with me. I ended up actually *taking control of my situation* though and we moved forward.

As each of my health concerns was addressed....I did get better...it took a long time though for this to happen. I was thankful that I had good insurance at the time.

I will also say this that, with time, and not finding anything which really helped me....I ended up trying vitamins and supplements....and found a *good combination of them, along with other tools that has allowed me to figure out a way to control my pain. I am not pain free nor do I ever expect to be.

I would encourage you to ASK your doctor to check your Vitamin D level....this is so very important for a lot of people. It is a simple blood test....but you MUST ASK the doctor to run it. Low Vitamin D can cause additional pain for some people and it can also affect other illnesses as well.

In the beginning, I also had a bout of the vertigo....I actually still do, on occasion. I fell twice outside at different times and ended up breaking a wrist each time. (different one) I now tend to be really careful about watching out for this now. I think that this is a part of FM...but I really do not know just how it all *connects*.

I have had 7 hand surgeries (2 of which was when I broke my wrists, the others were carpal tunnel), right elbow surgery, parathyroid surgery, cervical (neck) surgery. I also have bad knees (due to an accident back in the 80*s), and I have had 4 right knee surgeries over the years.

I do want to say that I also have the chronic fatigue....and I have NOT found anything which has fixed this issue yet...the doctor says that there is nothing that will help it....I continue to look and try different things though.

Now....I have no idea about you....but I think most of us FMers use to have A personalities....on the go all the time, always doing things for others...always putting others in front of our own needs...LAZY? Nope....I think not...I worked full time and also had a part time job for many years...raised 3 children and made sure they had activities in and out of school as well.

Running out of room.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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dollbug replied to dollbug's response:
2nd part continued here***

Self doubt? Well, I think a lot of us still have some and probably always will.

I know that I try to do things that I know I can no longer do....but I try any way....each time I over do or cross my line....I pay dearly for doing so....You will eventually learn just how much you can and can not do...with time.

There is no cure for FM....only ways to help yourself cope better.

Learning how to pace, pace and pace even more is a very IMPORTANT STEP to learn.

Drinking plenty of water every day also helps me....(water is all I drink and lots of it) Watching what I eat....
doing GENTLE stretching or exercises every day is also a must....(GENTLE being the key word here).

A heating pad is great when you have pains which will not ease....Stopain Spray (found at Walmart for just under $ is great stuff to use. Taking a hot shower at night using lavender bath salts right before bedtime is a good thing to help you relax so that you can sleep better.

Getting enough sleep is so very important....limiting your stress is also important...(this is probably the hardest thing for me to do)

Staying on a schedule of sorts is also a must for me....going to bed and getting up at the same time, if possible...(this is NOT an easy thing to always do either).
eating at the same time every day. Taking time to relax. Having some *me* time.

I do want to share the vitamins and supplements that I have found that has helped me a lot. Do your own trial and error process and research on things that you want to try....talk to your doctor about this.
Magnesium Malate, Fibro Response (found at vitamin stores) Multi vitamin with extra D..(I take Source One for 50 - since I am over 50-Walmart carries the Source One and they have them for all ages).. Omegas, plus others...these are the ones which has helped my FM pain the most. I also take a joint supplement.

OK...I have actually written a lot more than I planned to post....but I did want to share these things with you.

I am sure others will chime in as well.

Hang out with us here...ask questions, make comments and/or suggestions....this is a good group of people who offer all sorts of support...we are open 24 hours a day...all year long.

We understand what you are going through...we have mostly women here, a few good men...(although I feel like there are a lot of lurkers out there)...all ages...some work, some are retired, some are disabled or no longer work.

We share a lot here.

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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Survivor2007 replied to dollbug's response:
MiMi, thank you so much for your thoughful reply. We had spoken a few times before this, when I was just exploring whether I had fibro or not. I am a 5 yr breast cancer survivor, and also survived a serious fall 3 years ago.
Yes, I have always been a type A personality. I have always worked, sometimes 1 full time and 2 part time....was a single parent, raised my kids in a nice home in a good neighborhood, made sure they had what every other kid had.....music lessons, karate, theatre, senior trips to Disney and all of that. Back then, it all caught up with me with a bout of Cytomegalovirus that almost killed me. I have always worked in the psychiatric and behavioral health field, starting as direct care staff and working my way up to programs supervisor. When my kids were grown, I was able to dive into my career head first, went back to finish my degree and lived and breathed my job. Then I met my hubby.....definately was not looking for anyone. And within months I was diagnosed with cancer and my world caved in around me. It has been a very hard journey.....I used to be in control of my life. I brought in really good money. Now, I am in debt, in collections, completely dependent. No energy, feeling so much a ghost of my real self. I can't say that it started with the cancer, although that definately knocked some sense into me regarding my priorities. I think the fall that I took seems to be the starting point of my "decline".
I do watch my diet due to the cancer. I will admit that my physical activity level has seriously dropped. After the cancer and up until the fall, I exercised daily...mostly walking. I live in a small mountain town, so walking is definately challenging.
I get blood work done every 3mo, and that includes my Vit D levels. I get a thorough check up every 6mo, full chest x-rays every year. I have been CT scanned and MRI'd more times than I care to think about. Most times, there is nothing to be concerned about....and I have had a few biopsies that fortunately turned out benign.
I guess you are right.....talking to the therapist may not be a bad idea. I just get stuck on the money and travel that it will take....and maybe afraid to admit face to face with someone that I am just no longer who I was...and am having a hard time accepting the new self....I thought I had dealt with this with the cancer recovery....
 
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petal2010 responded:
"maybe I am not sick, maybe I am just lazy.....I should be picking myself up and getting busy....I should be getting focused and getting out and getting back to work."

Survivor2007

I have had Fibromyalgia/Chronic Fatigue for about 12 years. My life has changed soooooooo much. I cannot do the things I once loved plus putting up with the side affects of meds. You hit me in the heart when you said, "maybe I am just lazy" that has gone through my mind time after time. As I sure you really know, you are not lazy nor am I! I think when we cannot get up and do the normal things we use to do, our mind starts looking for reasons because we get depressed. My heart goes out to you. I take Cymbalta and Lyrica and I know they help but are the side affects worth it? I don't know! As you said both are so expensive that I feel bad for even taking them. Even with my insurance I am paying up to $400 per ninety days and about $300 for the other. What do you mean by the manufactor's discount? To be straight forward and not to depress you.......massage is the only thing that has worked for me. The problem....$$$$$ and the results only last a short time. Getting out and going somewhere helps me mentally but getting that "push" to even go out is very hard. I am not trying to discourage you, as I am 64 yrs old and I am sure my age doesn't help. Never had any "ear problems" before this past summer. I began having pain, drainage and went to our Urgent Care about three times. At first they treated it as a sinus infection and ear infection. The last time I went the doc. said my ear drum had burst. A lot of useless meds and $$$$$$$ for those meds. When my ENT doctor got back in town I went to him. Before he had examined me he said it is probably a fungus. It was! He had to vacumn out my ear (no pain) and blow in a powdered medicine. After about two more visits it did clear up. I hope this doesn't have anything to do with Fibro but I had not been in the pool nor outside in the humidity that much. I have no idea where it came from. I feel bad writing you with the all this negative stuff! Please email me if you would like. raalex1949@yahoo.com
petal2010
John 3:16
 
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Survivor2007 replied to petal2010's response:
Hi Petal, thanks for writing. I am trying to get my head wrapped around this whole thing and it is not easy. I am just learning about the stigma that seems to be attached to this illness. For my part, I am not happy to have it, but I am at least happy to finally know what is going on with me. But...I have shared with a few people that I have received this diagnosis and have gotten some somewhat shocking replies. Examples would be "Isn't this the latest designer diagnosis?", "Oh, I think everyone has this at some time....you'll get over it", "Isn't it just depression?". One person even insinuated that it is the lazy person's way of not having to be responsible.
I have to admit that although I am smart enough to not take these statements too personally....they do echo some of my self doubt and questions about this. Do others see people with fibro as just a bunch of depressed lazy people trying to get over on everyone else?
I dealt with something like this with my breast cancer treatment. I was fortunate enough to not need chemo or radiation therapy. When people found this out, it was like I was not going through cancer at all.....that it was all over. I lost both of my breasts to cancer....and yet felt like I had to apologize for not having chemo and rads. Somehow, there is a perception that to be a survivor, you have to go through the balding and burning to really qualify.
I will email you.....thank you for listening.....
Survivor 2007
 
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dakotaspirit1957 replied to Survivor2007's response:
Dear Survivor2007... No dear you aren't lazy... nor are you disabled with a silly illness that is trying to pull the wool over other peoples eyes... This causes depression this isn't depression... You are still a responsible and reasonable adult... and unfortionately you won't find a cure but you can find acceptance and you can find hope and peace thru finding acceptance...

No one out there that does not have FM will not understand what you are going thru... Just as no one that had 2 breasts removed and didn't have to be treated further will understand that... I have had cancer 7 times and I still cannot understand brain cancer or lung cancer for I haven't had them... But I can tell you what mine was like... What it felt like to go thru radiation... then kemo... then both... I can tell you what it felt like to be told I was dieing and then being told I survived... And I can tell you how it felt to watch others lose the battle and go to rest in peace...


I can tell you what it feels like to be told you have this then that then this then that and over and over,... and then be told you have FM... But I personally don't believe in it... Some Dr huh... He didn't last long... Not only didn't he believe in it but he tried to treat what he didn't know anything about... And totally failed... And got me totally messed up and I was so depressed I was suicidal... After all... How could I find hope in something even my Dr couldn't give me any hope in... I was never going to get better even tho he didn't believe in what was wrong with me...


I finally found a Dr who believed in FM but didn't know how to treat it... Batting a thousand... And the world around me was nuts... This person was saying it was in my head... I just wanted pity... and the other was screaming about some miracle drug she seen on TV at 3 in the morning... Gotta get it you will never feel so good...

Already tried it... didn't work... made me suicidal... Very sick in my tummy... Sorry no miracle drug for me... She went back to the drawing board till she seen the next commercial... Another 3 am phone call... No Cimbalta wasn't tolerated either... Keep searching we will appreciate a cure... lol...

My own parents were over hearing all these diagnosis... They asked for a dr report stating my illnesses... So I was fool enough to pay a dr $25 to write one up for me... stating all my illnesses... and now they have the proof... What I go thru to keep some family happy...

No hun... Please forget what the world has to say... Please accept FM and life as it is today.. You are still the same you... It is your abilities that have changed... Not you on the inside... YOU still have the same spirit and soul you shared with the world before and I will bet you are wonderful...

Don't let the put downs from those disbelievers and those who don't understand make you someone you don't want to be...

I went thru a time I was so angry and withdrawn that I was cold... I couldn't feel my own child's hug... I missed a lot in life then...

Today I make it a practice to work moment to moment to accept my illnesses and my life as it is now... Knowing I am still the same loving spirit and free soul I was before I became ill over 30 yrs ago... I am still strong and hopeful like I was when I was nicknamed "Dakota"...

Guess I have gone on enough... Take care...

Love... Jan/Dakota
 
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Survivor2007 replied to dakotaspirit1957's response:
Thank you for your reply Jan. I really am having a hard time embracing all of this. I will be seeing a psychologist who specializes in treating those with fibro and chronic pain next week. The following week, I will start my fibro program at the pain clinic....physical therapy, education, etc. It is interesting that the medical community appears to be understanding this illness.....but the general public doesn't have a clue. My primary doc talked to me about this as he is encouraging me to apply for SSD. He said that it will be more of a battle than it should be for me to get disability because fibro is being overdiagnosed and since it has no test to prove conclusively that it is fibro, there is a lot of fraud going on. Just my luck!!
I know that I will adjust to this, I just need to get my head and heart wrapped around it. As you know, once you have faced the big C.....everything else seems more reasonable. But it is tough.....I have worked hard to find and accept my "new normal"...and now it is up in the air again. I understand that after a period of adjustment, I will find the next "new normal" again.....but I guess I have a lot of stages grieving to do before that happens. I really never imagined that I would be at this place at this time of my life. I feel like being old just grabbed me.....even the cancer did not "steal" my feeling of life and energy. But this definately has.....and I am pretty angry about feeling old now. I hope this feeling will pass as I understand and get used to this.
Blessed Be......
KB (Surivor2007)
 
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Anon_10089 replied to Survivor2007's response:
It sounds like you have some good doctors backing you up! Just being as proactive as you are will help, I think. I've been wondering lately how people with FM would do emotionally if instead of living under a stigma, we had public support like other illnesses do. What if we had our own "Livestrong" kind of thing? I know that there are groups for FM, but what if it was a general public kind of thing? That we were given respect for getting out of bed, working, grocery shopping, etc.

I try to do that for myself. Believe me, having FM since I was young and getting a diagnosis in my 20's, I have battled guilt, anger, etc. Now, when I'm feeling down about what I'm not doing, I try to give myself some credit. Most people do not deal with the constant pain and fatigue that we do.

I think just about everyone with FM gets denied the first time for SSD. You may want to work with an attorney from the outset. You may still get denied, but at least you'll have help with paperwork, etc. I haven't gone through it myself, but many here have.

I hope you're able to get some relief, physically and emotionally in the days to come!
 
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Survivor2007 replied to Anon_10089's response:
Thanks Anon....I so agree that it would be incredible if this illness was recognized by the general public.....it would be great if it could be recognized by most general practitioners! I am very lucky that my doc is an internist and works primarily with us somewhat older folks. He is the one who suggested disability and is helping to collect all of my medical records as well as run some tests that he knows I will have to have for the disability claim. And the pain management clinic that I am going to also has this program that is specifically for fibro patients. So now it will just be the fight with the federal government.....and I have found some good advice for that as well. I have not yet done the initial filing...I want to have all my ducks in a row first. And I do plan to have legal support right from the beginning. I know this will be a long fight...and it will be quite a hardship on my husband and I financially for me to not be working and not able to claim unemployment.
From what my doc says, there are way too many people who are trying to use this diagnosis to avoid work and be supported by the government......and way too many docs that don't understand what this syndrome really is. Just like in so many things, it is the actions and impact of the few taking advantage of the system that mess it up for the rest of us.
I am so looking forward to getting hopefully some relief from the physical therapy. And I suppose the counseling will be okay as well. Thank you again for your reply...
KB(Survivor2007)


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