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meds or not
16 Replies
littleloey - July 19

I have been on Cymbalta 60 mg for over a year. I have all the same symptoms as when I started and am much more fatigued. I sleep well as I also take 200 mg of trazadone and lorazapam at bedtime. That has made me sleep well for several years. I have hip and back pain that cause problems with my walking. I have been tested for almost anything that you can name but the specialists have pretty much decided it is the FM in my muscles and tendons in the lower back (I also have scoliosis upper and lower back). Has anyone else felt the meds were not helping that much and gone off of them? What was your experience with that? I might be surprised and feel worse or maybe no change. No really willing to take Lyrica because of weight gain, I've been heavier and that hurts my back and knees even more. I have high blood pressure and would not take savella for that reason. I would appreciate any advice or hearing about your experience with meds.

 

January - July 20

Hi littlejoey! I took Cymbalta 60 mg (too much, IMO) and for me it was a bad drug. I had NO motivation to get out of bed! It works for some people, but it's been a bad drug for many. DO NOT just stop taking it, as withdrawals can be monstrous. But, there is not much reason to take it if it is not relieving your symptoms. You are risking long term damage to organ systems for nothing if it isn't helping you. It gave me high blood sugar. It has given other people liver disease.

You can google "Cymbalta side effects" and "Cymbalta withdrawals" and read the forums about other peoples' experiences - it is very important that you be very slowly tapered down off this drug or you can have serious problems. I think Cymbalta made my pain worse. And when I stopped it, I had severe withdrawals with anxiety. I was not slowly tapered down, my dr. just switched me to other drugs. I finally quit everything cold turkey and it was awful. I will not go anywhere near antidepressants again. I am still working on getting my brain back to functioning normally. Google ssristories - you can find information there about Cymbalta. Also at the peoplespharmacy website, they have a lot of information about Cymbalta, and you can ask questions.

If you are not an addictive type person, you might talk with your doctor about pain medicine. Also, you might ask for a sitting MRI to see if you have spinal problems like stenosis causing the pain. In my opinion, a lot of symptoms that are "fibro" symptoms can be caused by antidepressants when they stop working (as they inevitably do). If your doctor will try pain meds with you, it might be something like a narcotic mixed with acetaminophen. Ask to keep the acetaminophen dose as low as possible. And don't start in with a whole pill. Try cutting the pill in half and see if that will take the edge off your pain. Keep your dose as low as possible because you will build up tolerance over time. Also, just my opinion, if they say take every 4-6 hours, but you don't NEED it, don't take it until you need it. But work with your body and see what is best for you. Some people need a regular schedule. Overall, narcotics can work very well for pain if you treat them with respect. Also, if you have a bad reaction like nausea or no effect, ask to try a different type of drug formulation. There are patches that deliver pain medicine too.

You might want to google the different drugs available and read up on the side effects. Everything is a tradeoff. You have to decide what you will accept in terms of risk. I would not take Lyrica either because of the weight gain - that is risky in itself and bad for your back. And I am completely done with SSRIs and SNRIs. I think, eventually, they will be shown to be rather bad drugs. Already, Paxil, Zoloft and others are subjects of big lawsuits. Stick to the older proven drugs and you will be safer, I think. But talk it over with your doctor. Hope you can get some relief for your pain soon! Good luck with all of it.

 

littleloey - July 20

January, Thank you so much for your input. It helps so much to hear of others experiences. I have researched all the FM meds that are commonly used and just wonder if I wouldn't be better off without them. I do have Tramadol for pain, but take it very seldom. I do not tolerate pain meds well and usually end up vomiting. If I'm not on my feet the back pain is not so bad, it's standing or walking that makes it bad. And it causes such terrible fatigue. The more I walk the more tired I get (I am talking about just standing for 5 minutes or walking a very short distance, maybe 1/2 a block or less) the worse my walking gets. I sometimes wonder if I might also have Chronic Fatigue Syndrome. I plan to see my Dr. next week and talk to him about these things, but also value input from others who have experienced these things. He's the best Dr. I've ever had but he does not have FM, LOL.

 

junerd - July 20

As a fibro survivor for 25 years, I have gone through almost every medication. Usually to discover that I either became a zombie or/and they did very little to relieve pain and subsequently weaned myself off. I have been on Cymbalta and relafen for 3 months with little relief. While reading on this website I stumbled on to a page regarding dextromethorphan and three days ago I tried it in the form of DELSYM cough relief since I had some on hand. To my surprise and relief within 30 minutes I felt a great relaxing for my entire body. The "morning stiffness" that lasts all day, hip bursitis that has kept me tossing and turning for years. Neck pain. All gone. I consulted with the pharmacist to see if I could continue using it while I wean myself from Cymbalta and he said that would be safe. Three days is not much of a test, but I am very hopeful. Every person who suffers from Fibro has different reactions to different medications, but a $12 bottle of Delsym is worth a try. The second time I tried to find the page on this website I couldn't. So I searched dextromethorphan on this sites search bar and it came right up. Read for yourself and judge for yourself. I can only hope that anyone reading this will have as good an experience as I have.

 

Pikespeak - July 20

Hi Littleloey!

Your post is very interesting! I have also wondered what would happen if I went off Savella.
It "seems" to work, but the pain isn't completely gone (but I'm also only doing 75mg daily--under the full dose of 100). I was on Lyrica for about a year, gained weight and my BP went up to 239. Just switching over to Savella and taking fish oil
made my BP and my weight go down. I'm assuming it's even better now!

I have taken Jaunary's lead and am trying a ggluten-free diet. Not easy, but my weight is going down! As you know, weight loss will take pressure off your knees and back.

January and I also use small amts of Voltaren gel, which does give relief.

As for standing/walking: my back will start to bother me if I stand around too long. I have a bad disc, which causes the problem. Walking really isn't an issue if I keep moving....one of those velcro weight belts helps tremendously when I'm hurting.

Please write again and let us know how you're doing!

 

January - July 20

littlejoey - possibly, if you are vomiting from pain meds, you are taking WAY too much - you might tolerate a very small dose well. Or you might need another type of medicine. Many years ago I had similar reactions to pain meds - horrible vomiting. Now I have a tablet and I cut it into thirds. It has worked very well for me for years, and I have no side effects that I know of. If you think you have chronic fatigue, you might want to google "chronic fatigue viral" and see if anything there interests you. I personally think a lot of CFS is caused by bacteria or viruses and may even be from a mild case of encephalitis - which you could get from a mosquito bite. Good luck at the dr!

junerd - thanks for your interesting post. You sound like me, I've been struggling with this for a couple decades, probably longer. The person who posted info about guai gave a website run by Dr. St. Amand - you have to sign up, and they will walk you through the protocol - you have to stop using all plant-based substances on your skin, I believe. I hope you were able to find that information. Might be worth taking a couple Mucinex tablets to see what happens - after checking with the pharmacist!

Hi pikespeak! We meet again! NEWS FLASH! I am DONE with Voltaren gel! DONE. It works well on pain, even in small doses - I was using less than half the recommended dose. But I started waking up with stomach pain. My pharmacist told me the Voltaren goes into your bloodstream and yes, causes all the usual NSAID problems including stomach ulcers, GI bleeding, cardiovascular problems, etc. So I quit. A few days ago, my shoulder hurt badly, so I thought I would just put one little dab on there and rub it in. Not a good idea, as my stomach felt bad for 2 days. Then I heard from an old friend who was given Voltaren gel for a bad joint. In two days, it gave him the most horrendous GI upset ever! Maybe it's one of those things where some people can tolerate it and some can't. I'm definitely out on the Voltaren! Hope it continues to work for you though.

But, on a better note! What velcro weight belt are you talking about?? I have a stack of bad discs!

 

Pikespeak - July 21

Hi January! I don't know what it's called--you get them at Walgreen's. They're about 12" tall, black and stretchy. You put it around your lower back & belly and it has a large velcro closure. I took mine to China "just in case" (it packs flat). I needed it for the rest of the trip after standing around looking at the pandas!

 

littleloey - July 21

I have a new development. Kind of off the subject but maybe someone can give me some advice on this also. You need a little info first.
I am 62 years old and have worked for my employer( a huge international corporation) for 25 years. My plan has been to work to full retirement age. One reason being the cost of medical insurance. I insure myself and my husband who is 67 and retired. Since mid- May I have been on FMLA. During that time I am expected to check in with my manager weekly with updates. I carry short and long term disability insurance through my employer. I filed for it the first week I was off and was denied because they did not have all the Drs. reports. I appealed it and had all records sent to them. I feel certain that it will go through but they have up to 45 days to respond.
Now today my boss's manager sent me an e-mail basically reminding me that my FMLA will be ending in about 3 weeks and that hard decisions will have to be made and that he prefers that I make them. I take that to mean either come back to work or he would like me to resign. Now what should I do? If I resign I'm afraid that will stop my disability benefits. That will also stop all my insurance coverage through them ( while on FMLA I am able to send them a check each month to continue them. I can not physically return to work at this time but have not given up on being able to return if I can just get things under control with my walking and fatigue. I'm not inclined to hand in my resignation but I suppose they will terminate me. Then what? I'm sure some of you have been in this situation, maybe you have some advice or insight you can share with me. I sure did not need this stress added at this time. I'm sorry this is so long but I really don't know what to do about this. Thanks for listening.

 

Pikespeak - July 21

Hi! Don't know a thing about retirement/FMLA. But have you tried D-Ribose? It is a sugar that people with FMS lack in their muscles. Please read up on it and see if it might help you! I take it 3Xday in water (very little flavor--tastes sweet). FYI, I also take the GNC vitamin pack (for women) and other supplements. I have been on this regimen for 2 weeks now. Last night I told my husband that this is the first time I have felt "normal" in a LONG TIME. Today is another great day! Wishing you a better day today!

 

ladybug2007 - July 21

Well I would love not to take meds but it is inevitable for me to take them. I take Savella and Tramadol. Of course I was on Provigil and I was a new person. I actually wanted to get out and do things but since the insurance company has denied the med after a year, I do nothing. I went to the Rheumy today and was told up front he will absolutely NOT prescribe narcotics for fibro, he will if I have disc degenerative disease but not for fibro. I said I don't like taking meds anyway but I do want relief and I guess taking the maximum dose of Savella and Tramadol is OK but I am trying other things such as changing my diet and doing some stretching.

 

rnsarah32 - July 27

Hello Everyone, I'm 25 years old and was just diagnosed with Fibromyalgia. I've had the pain, the fibrofog, sleep distrubances, and depression/anxiety for about 5 years now.

My Dr. thought it was simply Depression/Anxiety. I was on Lexapro, Wellbutrin, Cymbalta, and Zoloft, none were effective. The side effects of Cymbalta were just terrible and the other 3 worked to control the anxiety for about 6 months, but then would stop working.

At the same time when I was complaining about pain, my Dr. had me see physical therapy (which did nothing for me). I spent out of pocket to see a massage therapist and to work out to try to get the endorphins flowing and a stronger core..STILL didn't feel good. Finally he told me maybe I should get a breast reduction to help with my back pain...(my breasts are only C's!)

....Finally when I found a new Dr. I had X Rays and MRI's all of which were normal except I had a bowing of my spine (not large enought to be scoliosis) and a loss of the curvature of my cervical spine. Again, my new doc thought it was depreesion that contributed to my pain so he prescribed me a SSRI and told me to see a Chiropractor. I saw the Chiropractor so much that my insurance wouldn't cover it anymore. This same new Dr. also prescribed me meds for ADD (which was really fibrofog I guess).

FINALLY, about 2 months ago I saw a Rhuematologist who told me it was FIBRO...I never really looked into fibro, i thought it was more myofacial pain syndrome...anyway she prescribed me Savella. I weaned off of the Zoloft to prevent Seratonin syndrome and tried the Savella. It was terrible! I couldn't go to work after being on it for a week because I was so nauseous, high temperature, sweaty with chills. My head felt like it was going to explode (never felt this bad on a med before). I called the Rhum. and she told me to STOP taking it. She told me my only other option was Lyrica, but I told her no because I didn't want to gain the weight and cause MORE pain for myself. She told me that she couldn't help me then and I should see a psychiatrist (who would be better to get the right doses of these SSRI/SNRI meds to work for me) ....

but I just don't have the strength anymore to deal with this. So basically, I'm completely weaned off of everything and I don't know where to go from here.

I was considering just asking for old fashioned pain meds, but I've hinted at it a few times to my current Dr. and I just felt like he thought I was med seeking. I DONT KNOW AND I'M SOO FRUSTRATED!

I'd also like to add that I bought a TENS machine which helps a tiny bit, but I still don't feel the way I want to feel- NORMAL. The last thing I did was schedule an apt. with a Neurologist, but not sure what my options are.

Please give me some med advice or some words of encouragement. All I know is I'm in pain, I'm tired and I have no hope. I don't know how people have this for decades and are still functioning. Any advice, PLEASE?

Thanks,
Sarah

 

junerd - August 2

Hi Sarah, I'm 74 and have dealt with FMS since 1986. I have during that time used every drug out there, but the encouragement that I can give you is the flares will pass and change over time. I weaned myself off of Cymbalta recently and now take aspirin and dextromethoraphan only as needed and that gives me more relief than the expensive (even with insurance) SSRI/SNRI being prescribed today. You have to research and find what works for you, you have to be brave and believe in yourself. A doctor with which you can build a good relationship is most important. Keep repetitive motions to a minimum and remind yourself to relax your muscles when you are feeling tense. I don't know how helpful this may be to you, as it is repeating so much of the advice that is already out here, but I do know that no matter what you do it will get worse and it will get better. Enjoy yourself during the good times and be good to yourself during the flares.

 

littleloey - August 5

Thank you Sarah for your words of encouragement. Although I realize that flares come and go, it seems like I have stayed pretty constant for a long time now. After more than a year and a half of Drs. and every test you can imagine, they have finally diagnosed my walking difficulties as being caused by the pain in my lower back being from the FM and a worsening of my scoliosis. It's not really the pain that is so unbearable to me as it is the fatigue. It is just overwhelming when I am either walking or standing. The Dr says I can not do either for more than 10 minutes per hour. I know that I can not do either for a continuous 10 minutes probably more like 5. my pain level would be through the roof by that time but I would be so exhausted and weak that I can hardly walk at all. Everyone thinks I'm falling to the side and they are always reaching out to grab me before I fall, even strangers in public. It is really embarrassing to be seen like that. I always thought of myself as being a really strong woman, physically and emotionally, I've sure been shown differently by this.
I feel like such a whiner any more. I know from this forum that so many out there suffer much worse than I do, that makes me feel really guilty for complaining on this site. But, I don't want to make all the people close to me miserable by listening to me complain. So, I guess it just all pours out when I get on here. Sorry. I'm rambling.
I pray that all of you have many more good days than bad. I know God is with me every step of the way, walking right beside me so I take comfort in that and luckily my family understands my limitations and supports me in every way they can. When I think about it, I have so much too be thankful for.
Thank God for grammar and spell check it's the best solution I've found for fibro fog! LOL
I wish you all a restful sleep tonight

 

January - August 7

littlejoey - have you googled "fibromyalgia viral" or something like that? Lots of people think there might be a viral component to chronic fatigue. I sometimes take low dose antivirals, and for me, they work wonders with the brain fog and the really severe fatigue. The problem is finding a doctor who will work with you! They just want to dish out antidepressants. I had Epstein Barr Virus and many other viral infections throughout my life, so who knows if something has yet to be discovered about a viral link with fibromyalgia. There is a doctor on the web, Dr. Dan Dantini, who talks about viruses and fibro. Also, Dr. Jacob Teitelbaum thinks there may be a connection. I have read about how easily we can contract encephalitis from bug bites - that can cause some of the symptoms of chronic fatigue and who ever thinks to check you for encephalitis if it's a "mild" case?

 

littleloey - August 8

Hi, January
Yes I have googled viral Fibromyalgia. I do know that Epstein Barre was one of the things my Dr. did consider and ruled out. My Dr. is very open and very supportive. Maybe next time I see him I'll discuss this with him. I'm very fortunate to have this Dr. He'll talk to me as long as I need to talk and he really listens. Most times he spends 40 minutes or more with me. A rare find these days.
I do feel like this fatigue is something more than FM. I think that I will research a little more about the possibilities of it being viral.
Thanks for your feed back.
On another note, I did get some good news this week. My private disability insurance carrier had denied my claim. I appealed their decision and 2 of my Drs. sent all their records from this year. They called me Friday and said that the records totally supported my claim, so I will get my disability payments after all. That eases my mind, at least I will be able to pay my bills. As we all know stress doesn't make FM any better.
There are so many suffering so much with this. You are all in my prayers.

 

January - August 8

Glad you got your disability - I know that's a tough process.

 

hdrider1975 - October 5

Hi there. I'm fairly new on here but I thought I'd add my two cents.

I tried Cymbalta, didn't notice a lot of change so my doctor put me on Savella and Lyrica at the same time. I gained 45 pounds (OUCH). I was also on percocet for the pain. I talked to my husband, he said he thought I was a zombie and that he didn't like the change in my personality. He would never want me to go off of any medication that was helping but he didn't see it helping. So I decided to ween myself off of the Savella first then the Lyrica, then finally the percocet. Can you say HUGE mistake? I have never felt worse. So apparently the medications were actually working and I just didn't realize it.

I finally found a wonderful RA doctor who "gets it". He has me on Cymbalta (60 mg once a day) again, a low dosage of prednisone (10 mg once a day), Hydroxychloriquine (200 mg twice a day) and percocet for pain. Now I should mention that I do have rheumatoid arthritis as well. I tried the topical cream some of you have been talking about and found no relief, for me, from it. The prednisone has made a huge difference for me! HUGE! I can't stress how much it has changed my life.

So for what it's worth - there are so many different medications out there and so many different combinations they can try - keep trying! Don't stop until you find something that actually works for you.

Good luck and blessed be!

 

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