Has anyone been on these medications?

Thanks Allen; first, I didn't know we could build up a little tolerance - so that's great news. I also have a cousin about 1 1/2 hours away that does Reiki and Oils -- I'm going to call him. He always offers, but I have never taken him up on it.

My Psych Doctor said that I could break up the Effexor however I wanted; but I didn't think it was making a difference either way - I'm going to break it into 3 doses, and see how that goes.

Thanks for all the info, you've got a lot of experience with this stuff, and a great help to everyone!

Renie


Allen Highnote said:

You have to be careful with massage therapists. Most MTs will listen and hear your concerns. Also, every MT's touch is different. Some are simply better than others. When I was diagnosed with fibro, I could barely stand a light touch. But over time I have been able to receive deeper and deeper touch.

If you communicate your needs, expectations, and potential response to touch to the MT BEFORE the massage, any competent MT should respect it. During the massage, communicate with the MT. Let them know what is working and what isn't. It's OK to ask them to go very lightly or very slow. I've only had one experience in my life (out of 500+ massages over 20 years) where I had to stop a massage. I simply didn't like her touch. The way I stopped the neck rub was "I'm sorry but this is causing my pain. I don't mean to be mean or rude, but I need to stop the massage. My fibro is flaring up and touch is hurting me today." Luckily it was a free neck rub from a class mate so it was no big deal. If it isn't working, don't suffer through it. The MT should understand. And if they don't, that's their issue an not yours if you've communicated your special needs and concerns up front.

Also, there are many different types of massage. Reiki is a form of energy work that does not involve touch and can be very powerful. Other types are warm salt wraps, warm stone work, cupping, sound work, myofacial. The internet is a great resource.

Have a good weekend everyone.

CoCoinBonita: My suggestion would be to see a different Rheumatologist just for a second opinion. Some of your medications are for the same thing, like Lyrica and Savella are both given for Fibromyalgia, so it really should be one or the other; not both. Also Neurontin works similarly, and although you are on a low dose, I don't know if there is a conflict with that also.
The addition of Namenda, Tylenol w/codeine, Vimovo and Xanax worries me; especially if you have Plaquenil Toxicity. It's just a lot of very strong medicines to be taking at the same time, and I can understand why you're tired and confused. Just for your own safety; look into a second opinion. That's just MY opinion!

Hugs, Renie

I have not tried either of these but I understand that in general medicine can take up to 4 or 5 weeks before you see results. Good Luck

I have been officially diagnosed with fibro since 2008. In the beginning I tried just about every drug that could possibly help. Having been pharmacist before withdrawing myself from the work force, I am knowledgable re medications. My biggest problems with FM were, in order of their intensity, fatigue, pain and confusion. I tried Provigil to help me remain awake during the day. It worked for about 2 weeks. Even at the maximum dose level I fould my self sleeping a good portion of the day. Since that was the strongest stimulant my rheum. would prescribe, I obtained a script for adderall from my primary MD. Started out at 30 mg a day 4 years ago and am now able to remain awake on just 10 mg a day. As for the pain I first tried Lyrica. That worked for a year until I had a frightening experience on it. I was driving and suddenly forgot how to drive. I was sitting behind the wheel and had no idea what I was to do. Fortunately my wife was with me and she helped me to cer the car stopped at the side of the road. Needless to say, I stopped Lyrica. I have a high school friend that took lyrica and went blind for several hours. Next I tried Cymbalta which took the edge off of the pain. Unfortunately it made me feel terrible and put me into a major depression during which I lost 35 pounds. Today I can tolerate pain that is a 5 or a 6 on a scale of one to 10. I don't like it but I feel better than when I was on either lyrica or cymbalta. If it gets above a 6 I find that a half of a Norco 10/325 or a little marijuana will take the edge off of the pain as well as lyrica or cymbalta with none of the side effects of either. I also find that if I push through the pain, I do ok. I can not push through the fatigue, however, with out paying for it the next day in the form of intensified discognition (fibro fog).

Fluoxetine is the generic for Prozac. I was on it for years and it seemed to work for a while but then I realized my depression was getting worse again. My psychiatrist suggested Cymbalta and that has helped me greatly. Better than anything I've had in the last 10 yrs, for both my depression and Fibro. It took a bit to find the best dosage but I'm so glad I agreed to give the Cymbalta a try. With Fibro being different for everyone, trial and error seems to be the only way to find what works best for you. Don't lose hope! Just be willing to keep trying until the right combo of meds are found for you.


Thank you so much. I have had this condition since 1995 along with Lupus. I changed jobs about 2 years ago and it was a job that I had done and left about 12 years ago, due to the high stress level. But I needed to work and within 19 months my symptoms were beyond my ability to maintain an 8 hour a day job. I was placed on temp disability in October and had great results with the combo or meds that included the plaquenil. In December I really believed I was returning to work, although I knew I would be returning to a highly stressful environment (I am a Career Counselor in San Diego,working with a population with chronic unemployment, thus finding jobs in this economic environment for folks with multiple issues is just so so difficult), but I digress.

I started having eye pressure and in January my neurologist took me off the Plaquenil. Shortly thereafter, like, within 4 days my pain levels were intolerable. I was in bed and literally in tears from pain in feet, skin, muscles and joints. I really wanted to die. Then I was diagnosed with glaucoma. My periferal vision is affected, but now, on top of the pain, which is somewhat under control, I also suffer from confusion, short term memory loss, and my inability to focus on any project, craft, email, etc. The namenda is a off brand typically prescribed for Alzheimer's but my Pain Management doctor stated it would help with the pain.

I see my Pain doctor next week and I will definitely will take all my meds and ask him to make some changes and remove some from my current regimen. My husband has accompanied me to my last several appointments and serves as a coach, asking the "whys" and the "what ifs" that I just don't remember to ask.

I make it a point to start a list and he is patient enough to make sure I check everything off.

On my first appointment he suggested a change in my diet and recommended a couple of books and a video. I read the China Study and watched Forks not Knives and within 3 days I eliminated protein and 95% dairy products. I did this with the idea that at my age of 54, I need to take more responsibility for my health. I lost 20 pounds in the first 5 weeks ( at 125 to 130lbs now), but my symptoms were never relieved. He assured me that I would feel better but it would take about 2 years to fully regenerate my cells. I have continued this style of eating, which has not been difficult as both my adult daughters have been vegeterian for most of their lives. I took it one step further and I am a vegan.

Again, I digress. I sleep about 4 hours at night, and thus I nap through out the day, which then makes it difficult to sleep.

Now I am just rambling.... sorry...:) I will let you know how my appoinment turns out. And thanks for your reply and this was very encouraging. May God continue to bless you. Socorro "CoCo" Alaniz.

Renie said:

CoCoinBonita: My suggestion would be to see a different Rheumatologist just for a second opinion. Some of your medications are for the same thing, like Lyrica and Savella are both given for Fibromyalgia, so it really should be one or the other; not both. Also Neurontin works similarly, and although you are on a low dose, I don't know if there is a conflict with that also.
The addition of Namenda, Tylenol w/codeine, Vimovo and Xanax worries me; especially if you have Plaquenil Toxicity. It's just a lot of very strong medicines to be taking at the same time, and I can understand why you're tired and confused. Just for your own safety; look into a second opinion. That's just MY opinion!

Hugs, Renie

Hi CoCo, I worked for a Rheumatologist for 12 years, and he always sent anyone on Plaquenil to the eye doctor for regular checkups. I think we saw Plaquenil Toxicity in 2 patients in that entire time. I'm so sorry that it happened to you! And they haven't put you on any other meds for the Lupus? I would ask about that too.

A lot of the confusion I think is the medications AND the Fibromyalgia. "Fibro Fog" can truly debilitate us. I know there are days that totally pass me by without noticing. I'll think it's Midnight, and look outside, and it's 8am already. When I write notes like this, I ramble on, and on....I try so hard not to, but I can't get my thoughts straight in my head to say what I want to in a short way. Does that make sense?

I personally never had a problem with Lyrica in the 2 years I was on it, but if you look back through this thread, you'll see Cecil had a terrifying experience with it. I've seen Neurontin have some harsh side effects too, but I've never heard anything about Savella yet. Since they are all working similarly, that's a scary amount of those kind of meds. I've never heard of Namenda being used for pain, but that would be more the Pain Management Doctor's department.
But, I've also been out of work for 3 years, so I'm sure things have changed. It was an extremely stressful office also, it was 1 Doctor, who would see approximately 40 patients a day, and a very small staff. Not enough people, too many patients. Plus, the Office Manager was embezzling from him, so that raised the stress through the roof--in addition to an hour commute, I had to give it up. I want to go back to work so badly, but I don't know if I'll ever be able. And sleeping? I usually sleep only every 2 days or so, and that has to be medication induced. Even then, I only sleep a few hours. I think almost all of us have some sort of sleep issue. But that's the root of Fibromyalgia -- we don't get restorative sleep, so we can't heal, and our bodies just keep chugging along, getting worse with pain.

I don't know anything about the diet you mentioned, but I have heard people say they have great results with a Gluten-Free diet. I was on a straight protein diet for a long time, and lost a significant amount of weight, but it didn't make me feel better. So I know protein is not the answer! I'll have to try the opposite like you, and go Vegan! I'd like to try any of them, but it's easier said than done. It's great that your Husband is your backup; I always forget things, every time. And my Husband is worse with remembering, so I don't even bother. I have lists, and either forget them, or forget why I wrote something down. So to have that second point-of-view, and just be there to remember what the doctor says, must be so helpful ! Do you see a specialist for the Lupus? I hate to see all the things you've suffered with--I hope the Doctor can get something worked out for you--If not, see another Doctor !! And I'm going to look into those diets you mentioned also.

Good Luck, God Bless, and Let us know how you make out !!

Hugs, Renie

Sorry you are in pain. I am on Lyrica and it has helped with the burning muscle pains very well. Plus there is a program from Pfizer to get the med for free if you are under a certain income. Check out their website. Look for Connections to Care. Good luck

Maria

Thanks Renie!

I will if my insurance will cover a second opinion.



CoCoinBonita said:


Thank you so much. I have had this condition since 1995 along with Lupus. I changed jobs about 2 years ago and it was a job that I had done and left about 12 years ago, due to the high stress level. But I needed to work and within 19 months my symptoms were beyond my ability to maintain an 8 hour a day job. I was placed on temp disability in October and had great results with the combo or meds that included the plaquenil. In December I really believed I was returning to work, although I knew I would be returning to a highly stressful environment (I am a Career Counselor in San Diego,working with a population with chronic unemployment, thus finding jobs in this economic environment for folks with multiple issues is just so so difficult), but I digress.

I started having eye pressure and in January my neurologist took me off the Plaquenil. Shortly thereafter, like, within 4 days my pain levels were intolerable. I was in bed and literally in tears from pain in feet, skin, muscles and joints. I really wanted to die. Then I was diagnosed with glaucoma. My periferal vision is affected, but now, on top of the pain, which is somewhat under control, I also suffer from confusion, short term memory loss, and my inability to focus on any project, craft, email, etc. The namenda is a off brand typically prescribed for Alzheimer's but my Pain Management doctor stated it would help with the pain.

I see my Pain doctor next week and I will definitely will take all my meds and ask him to make some changes and remove some from my current regimen. My husband has accompanied me to my last several appointments and serves as a coach, asking the "whys" and the "what ifs" that I just don't remember to ask.

I make it a point to start a list and he is patient enough to make sure I check everything off.

On my first appointment he suggested a change in my diet and recommended a couple of books and a video. I read the China Study and watched Forks not Knives and within 3 days I eliminated protein and 95% dairy products. I did this with the idea that at my age of 54, I need to take more responsibility for my health. I lost 20 pounds in the first 5 weeks ( at 125 to 130lbs now), but my symptoms were never relieved. He assured me that I would feel better but it would take about 2 years to fully regenerate my cells. I have continued this style of eating, which has not been difficult as both my adult daughters have been vegeterian for most of their lives. I took it one step further and I am a vegan.

Again, I digress. I sleep about 4 hours at night, and thus I nap through out the day, which then makes it difficult to sleep.

Now I am just rambling.... sorry...:) I will let you know how my appoinment turns out. And thanks for your reply and this was very encouraging. May God continue to bless you. Socorro "CoCo" Alaniz.

Renie said:

CoCoinBonita: My suggestion would be to see a different Rheumatologist just for a second opinion. Some of your medications are for the same thing, like Lyrica and Savella are both given for Fibromyalgia, so it really should be one or the other; not both. Also Neurontin works similarly, and although you are on a low dose, I don't know if there is a conflict with that also.
The addition of Namenda, Tylenol w/codeine, Vimovo and Xanax worries me; especially if you have Plaquenil Toxicity. It's just a lot of very strong medicines to be taking at the same time, and I can understand why you're tired and confused. Just for your own safety; look into a second opinion. That's just MY opinion!

Hugs, Renie

Hi Renie:

What a kind and compassionate response. I must confess I laughed and giggled and got teary-eyed, because I am YOU!!! Or better said, I can so relate to the rambling, the forgetting, the writing lists and forgetting where I left them, and when I find them I forget what they were for!

I was a real grammar and spelling "snob" and I knew it all and always was the best editor and reviewer for any publications from work. Now, and just within the last 3 months, I can't spell, I can't write concisely nor correct anyone's writing. I guess that is well deserved, so my apologies for all my mis-spells ( I know that is wrong, but can't tell you what is right, plus I am tired of dictionary.com! LOL) and grammar error, ok?

Again, I think I recommended "the China Study" and the related video "forks not knives".... which is based on the book. I have an ancient degree in Health Education and I must confess the book was a real good read! Some "heady" stuff, but Dr. Campbell cleary expains it all very well.

I see my pain management doctor on Thursday and I will have a discussion about my meds. Unfortunately I will be on my own. My husband is self-employed and this allows him a level of freedom. But, with this economy, he can no longer refuse any work and the cars must be "gased" and the house and bills still have to be paid!

Again, I appreciate the reply and I will log on daily for new insights and information.



Renie said:

Hi CoCo, I worked for a Rheumatologist for 12 years, and he always sent anyone on Plaquenil to the eye doctor for regular checkups. I think we saw Plaquenil Toxicity in 2 patients in that entire time. I'm so sorry that it happened to you! And they haven't put you on any other meds for the Lupus? I would ask about that too.

A lot of the confusion I think is the medications AND the Fibromyalgia. "Fibro Fog" can truly debilitate us. I know there are days that totally pass me by without noticing. I'll think it's Midnight, and look outside, and it's 8am already. When I write notes like this, I ramble on, and on....I try so hard not to, but I can't get my thoughts straight in my head to say what I want to in a short way. Does that make sense?

I personally never had a problem with Lyrica in the 2 years I was on it, but if you look back through this thread, you'll see Cecil had a terrifying experience with it. I've seen Neurontin have some harsh side effects too, but I've never heard anything about Savella yet. Since they are all working similarly, that's a scary amount of those kind of meds. I've never heard of Namenda being used for pain, but that would be more the Pain Management Doctor's department.
But, I've also been out of work for 3 years, so I'm sure things have changed. It was an extremely stressful office also, it was 1 Doctor, who would see approximately 40 patients a day, and a very small staff. Not enough people, too many patients. Plus, the Office Manager was embezzling from him, so that raised the stress through the roof--in addition to an hour commute, I had to give it up. I want to go back to work so badly, but I don't know if I'll ever be able. And sleeping? I usually sleep only every 2 days or so, and that has to be medication induced. Even then, I only sleep a few hours. I think almost all of us have some sort of sleep issue. But that's the root of Fibromyalgia -- we don't get restorative sleep, so we can't heal, and our bodies just keep chugging along, getting worse with pain.

I don't know anything about the diet you mentioned, but I have heard people say they have great results with a Gluten-Free diet. I was on a straight protein diet for a long time, and lost a significant amount of weight, but it didn't make me feel better. So I know protein is not the answer! I'll have to try the opposite like you, and go Vegan! I'd like to try any of them, but it's easier said than done. It's great that your Husband is your backup; I always forget things, every time. And my Husband is worse with remembering, so I don't even bother. I have lists, and either forget them, or forget why I wrote something down. So to have that second point-of-view, and just be there to remember what the doctor says, must be so helpful ! Do you see a specialist for the Lupus? I hate to see all the things you've suffered with--I hope the Doctor can get something worked out for you--If not, see another Doctor !! And I'm going to look into those diets you mentioned also.

Good Luck, God Bless, and Let us know how you make out !!

Hugs, Renie

Hi Cecil,

I read your reply and since I am on so many medications I don't know which one causes the confusion and memory loss. I have not forgotten how to drive but I have forgotten how to get home, even when I am in a 3 mile radius from my house. I thank God for GPS, but last week I was lost in a near by neighborhood I have driven by many times before and may have visited a friend or dropped off a daughter in that 'hood' but I had no signal on my cell and I was lost for about 10 mins, which seemed like an eternity. But, I learned in my Pain Management class to "stop, breath and talk yourself out of a potential panic attack" and that has worked. I finally found my way home but now I sometimes just stay home and try not to drive much alone. One thing I have forgotten is how to spell! And proper use of words and grammar, so please forgive me, but if I look everything up on dictionary.com, I would never reply to anything. It would be too exhausting!

I am really super concerned about the side effects of these meds and I really want to start diminishing the doses, but I am so afraid of the pain, because for a long haul I was maxing out at 10+ and I wanted to literally die. But, that is not an option for me. This has been the most painful and weirdest experience I have had in the 17 years with lupus and 10 years with Fibro.

I will continue on and hopefully get to a stable place.

Cecil said:

I have been officially diagnosed with fibro since 2008. In the beginning I tried just about every drug that could possibly help. Having been pharmacist before withdrawing myself from the work force, I am knowledgable re medications. My biggest problems with FM were, in order of their intensity, fatigue, pain and confusion. I tried Provigil to help me remain awake during the day. It worked for about 2 weeks. Even at the maximum dose level I fould my self sleeping a good portion of the day. Since that was the strongest stimulant my rheum. would prescribe, I obtained a script for adderall from my primary MD. Started out at 30 mg a day 4 years ago and am now able to remain awake on just 10 mg a day. As for the pain I first tried Lyrica. That worked for a year until I had a frightening experience on it. I was driving and suddenly forgot how to drive. I was sitting behind the wheel and had no idea what I was to do. Fortunately my wife was with me and she helped me to cer the car stopped at the side of the road. Needless to say, I stopped Lyrica. I have a high school friend that took lyrica and went blind for several hours. Next I tried Cymbalta which took the edge off of the pain. Unfortunately it made me feel terrible and put me into a major depression during which I lost 35 pounds. Today I can tolerate pain that is a 5 or a 6 on a scale of one to 10. I don't like it but I feel better than when I was on either lyrica or cymbalta. If it gets above a 6 I find that a half of a Norco 10/325 or a little marijuana will take the edge off of the pain as well as lyrica or cymbalta with none of the side effects of either. I also find that if I push through the pain, I do ok. I can not push through the fatigue, however, with out paying for it the next day in the form of intensified discognition (fibro fog).

thanks... I think I may have replied to this message already, but since I am not sure, I did want to thank you! :)

Renie said:

CoCoinBonita: My suggestion would be to see a different Rheumatologist just for a second opinion. Some of your medications are for the same thing, like Lyrica and Savella are both given for Fibromyalgia, so it really should be one or the other; not both. Also Neurontin works similarly, and although you are on a low dose, I don't know if there is a conflict with that also.
The addition of Namenda, Tylenol w/codeine, Vimovo and Xanax worries me; especially if you have Plaquenil Toxicity. It's just a lot of very strong medicines to be taking at the same time, and I can understand why you're tired and confused. Just for your own safety; look into a second opinion. That's just MY opinion!

Hugs, Renie

Coco- Thank you so much for the nice words! So funny you say what you did: I am also a perfectionist when it comes to grammar and spelling. Though not anymore with Fibro ! It's so funny that you say that; 5 minutes ago I was reading an article in a national magazine, and the grammar was wrong in a few places. I got on my soap-box and had to tell my husband how that is totally unacceptable! And I keep a dictionary and thesaurus open on the computer all the time. Is that cheating? My husband is a self-employed Electrician, who had Rotator Cuff surgery 3 weeks ago. So, needless to say, he is working what he can, with his arm in a sling. So I understand perfectly. NY State is a mess--but I think it's tough all over right now. $100 for gas for my husband's truck alone. I'm glad I'm not commuting 50 miles each way anymore!

When they stopped the Plaquenil, did they replace it with anything specifically? I'm wondering how they would handle a flare-up of Lupus and Fibro at the same time. And when you see your doctor this week, don't forget your notepad! Someone told me to put a rubberband around my wrist to remind me of things--but I could never remember why it was there. Right now, if I really have to remember something important, I use an on-line reminder service. It's worth the 10 cents or whatever, just for the peace of mind. I hate feeling oblivious and foggy all the time.

Good luck on Thursday, we'll be waiting to hear from you!

Hugs, Renie

Sarah,

Sounds like you should see a new doctor. Exercise is good, however, sometimes meds are needed, particularly when the pain is intolerable.

SarahW said:

Wow! The more of these I read the more I know i am not getting the help I need. I tried Cymbalta but it made me suicidal. I have not tried any of the others because my doc says all I need is exercise. I REALLY need a new doc. This is becoming clearer and clearer.

Renie,

Between the Neurologist, the Rheumy, and the PM doctor they agreed that the SLE was under control. How they figured that out is beyond me. So all the meds I previously listed are to treat the fibro! Too many for me.

Renie said:

Coco- Thank you so much for the nice words! So funny you say what you did: I am also a perfectionist when it comes to grammar and spelling. Though not anymore with Fibro ! It's so funny that you say that; 5 minutes ago I was reading an article in a national magazine, and the grammar was wrong in a few places. I got on my soap-box and had to tell my husband how that is totally unacceptable! And I keep a dictionary and thesaurus open on the computer all the time. Is that cheating? My husband is a self-employed Electrician, who had Rotator Cuff surgery 3 weeks ago. So, needless to say, he is working what he can, with his arm in a sling. So I understand perfectly. NY State is a mess--but I think it's tough all over right now. $100 for gas for my husband's truck alone. I'm glad I'm not commuting 50 miles each way anymore!

When they stopped the Plaquenil, did they replace it with anything specifically? I'm wondering how they would handle a flare-up of Lupus and Fibro at the same time. And when you see your doctor this week, don't forget your notepad! Someone told me to put a rubberband around my wrist to remind me of things--but I could never remember why it was there. Right now, if I really have to remember something important, I use an on-line reminder service. It's worth the 10 cents or whatever, just for the peace of mind. I hate feeling oblivious and foggy all the time.

Good luck on Thursday, we'll be waiting to hear from you!

Hugs, Renie

Renie,

A dictionary by your PC is not cheating, it is smart! I just don't have a light one and I don't have the space by my laptop.

I am sorry to hear about your husband's surgery. So many folks have the idea that if you are self employed, you are in "the money!" How far from the truth. My income has helped supplement the lean months. And although I am receiving Temporary Disability, that too will end soon.

We live South East of San Diego in a beautiful small almost rural, but not quiet, older established community known as Bonita. And, talk about being messed up, I live in California!!!! We are taxed probably as much as you in NY.

I am not out too often and I was with my hubby and we were out and needed gas....that was a shock! $49.99 to fill my 10 year old Ford Taurus! Just two weeks ago I filled it for 36.00! Tony, my hubby, told me that his truck takes about 150.00 2 to 3x per week, yikes!

He is also in the Construction industry. He was a drywall hanger for many years, started a home inspection business, got a contractors license and we have a retro-fit window business. He no longer hangs drywall, but he would like to only be selling windows, but he juggles all three to make ends meet.

Although I am vegan he is not and I have managed to implement healthier choices in our meals, but when he goes shopping ....forget it... cookies, white pasta and canned vegies are his choices....LOL! I thought the transition would be difficult especially because I love dairy, and may favorite is, no, was non-fat milk. I told my doctor that I did not think I would have a problem not eating animal protein, but dairy???? Are you kidding me? Well, I read the book, watched the video and I was convinced to try it for 30 days, and I made up my mind to try it. And I was a "steak 2x per week" minimum type of gal. But I am on month 6 or 7, I would have to look it up to tell you, because I do not remember ANYTHING!.

My daughter recommend I watch 2 documentaries on NetFlix: "Fat, Sick and Nearly Dead" and Food Inc. and that solidified my decision to stick this out. It is easy now and try many types of foods and there are enough left over hippies from the 60's here in the San Diego area that have some decent /desent (seriously? But I refuse to look it up on Dictionay.com) restaurants.

Well, I am going to sleep for a couple of hours and I will be up by 2: a.m. PDT for sure..... I'll check in tomorrow.

Good night and God bless, and don't be over critical with my writing/spelling and grammar.... :)

CoCo



CoCoinBonita said:

Renie,

Between the Neurologist, the Rheumy, and the PM doctor they agreed that the SLE was under control. How they figured that out is beyond me. So all the meds I previously listed are to treat the fibro! Too many for me.

Renie said:

Coco- Thank you so much for the nice words! So funny you say what you did: I am also a perfectionist when it comes to grammar and spelling. Though not anymore with Fibro ! It's so funny that you say that; 5 minutes ago I was reading an article in a national magazine, and the grammar was wrong in a few places. I got on my soap-box and had to tell my husband how that is totally unacceptable! And I keep a dictionary and thesaurus open on the computer all the time. Is that cheating? My husband is a self-employed Electrician, who had Rotator Cuff surgery 3 weeks ago. So, needless to say, he is working what he can, with his arm in a sling. So I understand perfectly. NY State is a mess--but I think it's tough all over right now. $100 for gas for my husband's truck alone. I'm glad I'm not commuting 50 miles each way anymore!

When they stopped the Plaquenil, did they replace it with anything specifically? I'm wondering how they would handle a flare-up of Lupus and Fibro at the same time. And when you see your doctor this week, don't forget your notepad! Someone told me to put a rubberband around my wrist to remind me of things--but I could never remember why it was there. Right now, if I really have to remember something important, I use an on-line reminder service. It's worth the 10 cents or whatever, just for the peace of mind. I hate feeling oblivious and foggy all the time.

Good luck on Thursday, we'll be waiting to hear from you!

Hugs, Renie

This concerns me, how much Xanax are you taking ? just this drug alone can cause these adverse reactions. Automobile accidents are on the rise with xanax and it is notoriously given out for what it was not created for. I wish that pharmacists and physicians would watch interactions and how drugs are putting too much burden on the liver and the kidneys. Damage to to the kidneys can not be undone and though the liver is able to regenerate to an extent damage by drugs is dangerous. I worry what we doing to ourselves . TMJ with fibro limits medication options for me I get fustrated too.

CoCoinBonita said:

I am on Xanax, Lyrica, Savella, Neurontin (gabapentin - 600mg per day), Lexapro, Vivomo, Namenda, and Tylenol with codeine as needed. After about 6 weeks, I am finally seeing a little results. Problem now is that I am so tired, confused, and have little short term memory. I am so frustrated as I cannot function without naps and if I drive, I am afraid I will get lost, which has happened more than once.



angelia said:

This concerns me, how much Xanax are you taking ? just this drug alone can cause these adverse reactions. Automobile accidents are on the rise with xanax and it is notoriously given out for what it was not created for. I wish that pharmacists and physicians would watch interactions and how drugs are putting too much burden on the liver and the kidneys. Damage to to the kidneys can not be undone and though the liver is able to regenerate to an extent damage by drugs is dangerous. I worry what we doing to ourselves . TMJ with fibro limits medication options for me I get fustrated too.

CoCoinBonita said:

I am on Xanax, Lyrica, Savella, Neurontin (gabapentin - 600mg per day), Lexapro, Vivomo, Namenda, and Tylenol with codeine as needed. After about 6 weeks, I am finally seeing a little results. Problem now is that I am so tired, confused, and have little short term memory. I am so frustrated as I cannot function without naps and if I drive, I am afraid I will get lost, which has happened more than once.

Angelina,

Thank you for your reply. I see my Pain Management Doctor in a few hours. I have prepared a list of meds and issues I am still having. I keep reading that it is a matter of finding the right combination of meds. I am also concerned about the combination and the fact that I am taking, I believe 9 meds and some are suppose to treat the same thnings; i.e.: Lyrica, Savela and Gaba.

I will post the results of my appointment later on this day. I just hope I don't forget to address these issues. He is fairly good about listening. I think I just have to be more assertive and ask to explore other options and testing for other potential concerns: Epstein Barr, Hepetisis, Parvo etc. I hope I sound convincing and that I am able to be firm.

Believe it or not, just having the opportunity to write this out is helping with resolve and conviction.

This board has given me more "backbone", which is strange, because I am known as very unspoken person but sometimes I just clam up with doctors. Hummmm ... reminds me of a commercial playing out here in CA.... this man asks so many questions about an electronic device, including if it comes in other colors, change of scene... he is in a gown and sitting at a doctor's office bed and the doctor ask him "do you have any questions?", to which he replies: "no" and the doctor asks: "are you sure?" and he says, "yes".... why are so intimidated? Must hold strong and be distracted. Too bad I am going alone....:(, but I have written down my concerns and I am good about bring out my journal and checking off the items. And doctor never seems rushed....

Prayers appreciated!

CoCo

angelia said:



angelia said:

This concerns me, how much Xanax are you taking ? just this drug alone can cause these adverse reactions. Automobile accidents are on the rise with xanax and it is notoriously given out for what it was not created for. I wish that pharmacists and physicians would watch interactions and how drugs are putting too much burden on the liver and the kidneys. Damage to to the kidneys can not be undone and though the liver is able to regenerate to an extent damage by drugs is dangerous. I worry what we doing to ourselves . TMJ with fibro limits medication options for me I get fustrated too.

CoCoinBonita said:

I am on Xanax, Lyrica, Savella, Neurontin (gabapentin - 600mg per day), Lexapro, Vivomo, Namenda, and Tylenol with codeine as needed. After about 6 weeks, I am finally seeing a little results. Problem now is that I am so tired, confused, and have little short term memory. I am so frustrated as I cannot function without naps and if I drive, I am afraid I will get lost, which has happened more than once.

CoCo, another blood test to ask for is Lyme Disease. The symptoms can mimic a lot of our problems, and left untreated can be totally debilitating. (My cousin: her Doctors were so busy treating the Fibro, they overlooked the Lyme for 2 years -- now she is basically bedridden with symptoms, and only 48)

Wishing you great luck and a very stiff backbone today !!!!

Hugs, Renie