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8 Replies
Fantod - February 9

I read your response to a question posted by Axxie and I am really worried about you. I know that you are new here and quite overwhelmed with Fibromyalgia. I am going to give you a crash course on it so you have a better idea of what you are dealing with. Knowledge is power.

Fibromyalgia (FMS) is a disorder of the central nervous system that causes widespread, chronic pain. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medications. OTC remedies like Tylenol and Alleve do not the address the type of pain caused by FMS.

FMS is recognised by the World Health Organization, The Centers for Disease Control and the National Arthitis Foundation. It is correctly referred to as a syndrome.

There are three prescribed medications used to treat FMS. They are Cymbalta, Lyrica and Savella. The longer a chronic pain cycle continues, the harder it becomes to manage or stop. I can understand that drug side effects are unpleasant but you really should not be adjusting your medication without talking to your doctor first.

If you are having difficulty with paying for your prescriptions there is help available. Ask your doctor for samples. Go to the drug manufacturers websites and find the section on consumer assistance. There are vouchers available and other programs to help you pay for them online.

It takes time and a lot of tinkering to find the right combination of medication for each FMS patient. There is no set formula for treating it as all of our symptoms vary. If you have issues with constipation due to medication add Benefiber or something like it to your diet. I use it every day. And, constipation can also be part of IBS which is yet another perk of Fibromyalgia.

Also, call your local hospital and the United Way to find free clinics in your area. See if the hospital has a rheumotologist who does pro bono work and/or a free/reduced cost clinic. You can also use Google to search by typing in free clinic and the name of your metro area.

Catholic Social Services has counseling service available on a sliding or no fee basis. You don't have to be Catholic to use them. I'd like to gently suggest that you consider getting some extra professional support to help you during this difficult time in your life. Cognitive behavioral therapy would give you some tools to help you better manage your situation. Many of us see someone for help managing our lives.

One of the reasons that you are so tired and sore is lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. If you are not on a sleep aid, you should be. Treating the sleep issues associated with FMS is crucial. If you can not afford a sleep aid like Amitrityline than try a homepathic remedy like Calms Forte or Melatonin. You can find them in any decent health food store or the Vitamin Shoppe. Make sure that you understand how to use them and any risks associated with taking them.

Diet is also very important. If you use anything with an artifical sweetner - toss it. That includes Splenda. If you need a sweetner, use something made from the nontoxic Stevia plant like Truvia or SunCrystals. You can find them in the baking aisle right alongside the other stuff. Avoid deep fried food, lunchmeat and red wine (nitrates) which will all probably make your pain levels worse too.

A good primer for understanding and educating other people about FMS is "Fibromyalgia for Dummies." You can find it on Amazon. Like all of the dummies series, it contains good basic information about this infernal syndrome.

Cher0208, you are not alone and things will get better. The hardest thing to accept when living with chronic illness is the limitations that it places on you. Work on being grateful for the things that you are still able to do no matter how piddling. Try not to focus on the losses which only increases your stress level and your symptoms. The sooner you apply this concept to your life, the better. I hope that my comments have been helpful to you in some way. Happy belated birthday and take care.


Cher0208 - February 9


I can't express enough how much I appreciate your post. Thank you so much. I know I shouldn't have lowered my dosage w/o speaking to my doctor. I will go see her on Saturday and admit to her that I decided to wean myself off. I know she won't be happy but we have to figure out a plan together. I am starting to feel pretty bad again. And I also appreciate the information on contacting the drug manufacture's and finding free clinics. My cobra payments are $642 a month so the stress of wondering when I will lose my health insurance is definitely throwing me over the edge. I am only beginning to understand fibromyalgia now. Even after my diagnosis, I was sure that ALL of the doctors were missing something and that there was something much worse going on or at least in addition to the fibro. I have always had high level anxiety and I'm never afraid to admit that I have gone to therapy before. I have had a few that somehow after leaving their office I was even more self righteous and angry. But there was one from my foster care center that was just a counselor, she was amazing and she even taught me breathing exercises that I still try to do. is most definitely time to find someone professional to help me through this time.

We can't just expect a doctor to give us a pill and make this nightmare end. We have to help ourselves. It took a year to accept it but alcohol is not an option for me ever. Not beer, wine, nothing. Sugar is the same thing. They both cause a lot of inflammation in my body and it takes me a week or more to recover. I was a vegetarian and I think I know a lot about food/nutrition, well more than most people around me. Anyway, your post was extremely helpful and uplifting for me. Thank you again.



Fantod - February 10

Cher - You are very welcome. I just wanted to be sure that you were aware of options to help with your situation. Dealing with FMS is practically a full time job all by itself. Its hard to think at all when you really don't feel good. I'm relieved to hear that you'll be seeing your doctor and discussing Savella. The longer a chronic pain cycle continues, the harder it becomes to manage or stop. Hopefully, she'll make a recommendation for something else that might work. Hang in there girlfriend - we're all in this together! Today's motto: "If you are going through hell, keep going." Winston Churchill


January - February 10

Hi Cher, I agree with Fantod, who really knows her stuff. However, I must note that while the current aggressively-marketed fibro drugs work for some people, they are a nightmare for others.

Please, before you start fibro drugs, do a lot of research, and be suspicious of websites that are hosted by drug companies - they are focused on selling drugs and making money for the shareholders more than they are focused on your health. I copied info from a few websites and posted it here tonight. Granted, it is negative info, but you should be aware of it. A lot of the strange "symptoms" I see listed on this forum are also side effects of some of the fibro drugs. If you take herbal supplements, you be very careful about using them with prescription drugs, check everything with your pharmacist.

There is no test to find out which neurotransmitter is out of whack in whom, and doctors tend to throw drugs at you and see what sticks. This is hardly a "scientific" approach. There is a good book called "Your Drug May Be Your Problem" which talks about how illnesses like fibro can be confused with drug reactions, interactions, and lengthy (way more than the 2 weeks they tell you) withdrawal symptoms. If you are taking prescription medicine, be aware that you can trigger withdrawal symptoms by decreasing the dose!

I highly recommend Dr. Daniel Amen (books and PBS shows) to help you understand neurotransmitters, and to get some ideas for natural supplements. If you can, try these before you go to the serious drugs.

Everyone's different. I personally have done much better with older drugs that have been around for decades.

Best of luck to you.


Cher0208 - February 10

Hi January,

Thanks for posting. I am definitely wary of new drugs. I would definitely prefer to be on something that has been around a while. So I'm going to speak to my doctor on Saturday about that. The thing with Savella was after slowly graduating the dose up to 100 mg a day, I began having dizzy spells. Sometimes I would have to just plop down on the floor wherever I was because my vision went black and I felt like I was going to pass out. Now, it sounds worse than it was because as a teenager I would get very heavy periods and the same thing would happen if I got up too fast. Anyway, my doctor and I decided to cut down to 50 mg. a day and one day in the car I had such an episode. Thank God I wasn't driving. First off, I couldn't take a deep breath which has been happening lately anyway. My chest felt tight. But suddenly I started to feel dizzy and started seeing black spots and everything was sounding far away. My boyfriend pulled over and asked me to get out to walk but I couldn't. At this point I was having a panic attach in addition and I just wanted to go to the ER. Instead we went to the park. I was breathing as deep as I could given my chest was tight. I did some light jogging once it lightened up and eventually went home. I didn't feel right until the next day. The dizziness has never happened when I was sitting down. I should also had though I have been getting more and more sensitive to caffeine. At this point I don't consume it at all. Earlier that day my boyfriend was drinking an energy drink that he takes before working out. I literally only took 3 sips of it. I really believe the energy drink in combination with the Savella did it to me. Now that scared the crap out of me. I thought I was having a heart attack or who knows what. So one way or another Savella isn't meshing with me. Yes, the pain is better on it but I can't walk around light headed. Anything that does that sounds dangerous. And every time I go to a doctor (since being on Savella) my blood pressure is low. So we'll see what she says on Saturday.

You know it seems more and more than fibromyalgia is a sensitivity thing. I'm sensitive to noise sometimes, to light, to smells, to foods, to caffeine. I have been avoided starch, caffeine, alcohol, sugar, chocolate and anything else that I have read to avoid. And thank GOD!!! Today is a good day. Maybe like 5% pain and no fibro fog. I'm at work and feel totally clear.

Anyway, you guys are all recommending some great books to me and I can't wait to read them. Like Fantod said "Knowledge is power." With the right information I can make better day to day choices and stop making this thing worse than it has to be. I appreciate all of your input. Thank you all!


January - February 10

Cher - PLEASE SEE A DOCTOR SOON AND INSIST THEY READ OVER THE SIDE EFFECTS OF SAVELLA WITH YOU AND ADDRESS THEM! Print this off so you have it with you, in case you forget what you have been going through. It is clear that you are suffering from anxiety. I am concerned that you are mixing in things like caffeine and maybe other supplements. Savella is a serious medication. I have copied some information about Savella which I got from I put in caps the side effects you have clearly mentioned in your post. You may be experiencing even more than you have written about. These are SEVERE side effects. Get some help, and don't let them dismiss your complaints. You may want to speak with a good pharmacist. Take in a list of EVERYTHING you take.

Severe allergic reactions (rash; hives; itching; DIFFICULTY BREATHING; TIGHTNESS IN THE CHEST; swelling of the mouth, face, lips, or tongue); bizarre behavior; bloody or black, tarry stools; confusion; dark urine; decreased concentration; decreased coordination; excessive sweating; FAINTING; fast or irregular heartbeat; fever, chills, or persistent sore throat; hallucinations; memory problems; muscle pain or weakness; new or worsening agitation, ANXIETY, depression, PANIC ATTACKS, aggressiveness, impulsiveness, irritability, hostility, restlessness, or inability to sit still; pale stools; red, swollen, blistered, or peeling skin; seizures; severe or persistent headache or DIZZINESS; severe or persistent nausea, vomiting, or diarrhea; severe or persistent trouble sleeping; stomach pain; suicidal thoughts or attempts; tremor; trouble urinating; unusual bruising or bleeding; unusual or severe mental or mood changes; unusual WEAKNESS; yellowing of the skin or eyes.
Hopefully, everything will be OK. But get checked out and take good care of yourself, Cher. There are other meds besides the SNRIs (Cymbalta and Savella) - they just don't sit well with some people, but you have to speak up!


January - February 10

PS to Cher, please read my post entitled "Savella information" from 2/9/11. Some people have apparently had heart problems from this drug...


Cher0208 - February 11

Hey January,

I have way more symptoms on that list than what you put in caps. Today, I realized that I needed to write down a list of things to bring with me to talk about with my dr. I just didn't know where to begin. Also, I read your post earlier on Savella. That is some scary stuff. What scares me the most is the side effects you listed above about tightness in the chest and difficulty breathing. Now I'm thinking I should have gone to the ER, thank God I'm OK. The nutritionist has me on whole food supplements from Standard Process. They're basically just foods broken down into different supplements and my doctor assured me that they don't conflict with the Savella. I have had about three days with no stimulants including caffeine and sugar and I can feel a tremendous difference. I'm hoping she can recommend something better for me. Today has been such a great day in terms of not having any pain and feeling so much less "foggy".

Initially, when the Dr. prescribed Savella I wanted to ask her for something that's been around longer. But I didn't speak up. So I'm looking forward to seeing her on Saturday and having a nice long, detailed conversation about all of this. I'll let you know how it goes.


January - February 11

I realized AFTER I posted the Savella info it might scare some people -- please don't be scared, just make sure you pay attention and ask questions. Show the doctor the list of side effects, don't let him dismiss your concerns. Glad you are getting in to the doctor soon - I think you said Saturday. You might want to check with a pharmacist in the meantime. Sometimes doctors don't understand about the side effects!

Glad you had a better day today. I can tell you are overwhelmed. We have all been giving you suggestions - but I think the best thing to do right now is to simplify everything. Just cut it down to the basics. Start with Fibro for Dummies. Get yourself a counselor who works with chronic illness. Stay away from liquor and caffeine. Avoid St. Johns Wort or 5HTP - they can be trouble if you are taking Savella. Make sure you are eating healthy and SLEEPING enough. Get yourself calmed down and then decide what your priorities are. You seem to be pulled in a lot of different directions and under stress. So just take it easy Cher. It will get better. Hang in there.



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