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Severe Pain.. Hate this....
19 Replies
julissarodriguez - June 5

Hello, my name is Julissa, and I have had Fibromyalgia for years .. dont even remember how long its been. However, ive noticed that my pain has been getting worse and worse during the past years. Now, its at a level that is interfering with my life. I am currently taking Tramadol 50mg, 2 pills, at one time as needed for pain. I am also taking Cymbalta, to "manage" fibromyalgia, and muscle relaxers, all prescribed by my rheumotologist. However, this isnt helping at all. The tramadol sometimes works, but I end up taking more than the dose inorder for it to work. I dont know what else to try or do. My doctor doesnt want me to try Lyrica due to the multiple side effects this medicine has. Is someone out there taking any stronger pain medications? I have also tried heat therapy. I sleep with a heating blanket around my legs every single night. Strangely, my pain is located mainly in my lower legs. Its weird how both legs hurt in the exact same spots. I also have back and arm/hand pain. But if I had to pick a spot where the pain is worse, I would say my legs... I hate this.. Its a condition I have learned to "deal" with, but I hate to think that there is no cure. I have tried vitamins, and that didnt help. Im glad I found a place where I can talk to others that have the same thing I have. Now I feel like Im not alone in dealing with this condition.

So, if anyone out there has tried any other medications, please let me know. I have another appointment with my doctor next week.

Thanks,

Julissa

 

Fantod - June 5

Hi Julissa - Welcome to the group! I'm not sure I agree with your doctor about not trying Lyrica. If they are concerned about the main side effect which seems to be rapid weight gain, you can be taken off of it if that becomes a problem. All drugs have multiple side effects but it doesn't mean that everyone will be affected. Eliminating one of the three drugs used to treat Fibromyalgia (FMS) right off of the bat without trying it first seems a bit irrational to me. Just food for thought.

The newest drug in the fight to manage Fibromyalgia is Savella. It was approved by the FDA in 2009. Savella has been used in Europe for decades. Some people have had very good results using it. Many rheumotolgists seem to have sample packs available for patients to try.

Also, has your doctor considered that your leg pain may aleviated by using a nerve pain blocker such as Gabapentin? I have quite a bit of pain in my legs. Mine is due to FMS and degenerative disc disease. My pain specialist decided that we should try Gabapentin to see if it helped and it did. I use it at night as the drug makes me sleepy. Any additional help with sleep is always a good thing when dealing with FMS.

Julissa - you don;t mention if you are taking anything for sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. This rapidly becomes a vicious circle. Getting restorative sleep is a crucial part of managing FMS. If you are not using a sleep aid like Amitriptyline than your doctor is not treating you properly. This is one of the basics of mananging FMS.

Also, if you use artifical sweetners in any form -get rid of it. That includes Splenda. FMS patients are typically very sensitive to chemicals and food additives. Artificial sweetners, lunch meat (nitrates), and deep fried foods are all likely to increase your overall pain levels. If you need a sweetner, use something made from the nontoxic Stevia plant. You can find Truvia or Sun Crystals right next to the rest of the sweetners in any decent grocery store.

I understand your frustration with FMS completely. We all experience a different set of symptoms which makes treating it very difficult. You are not alone. I hope that some of my comments are helpful to you. Take care and let us know how you are doing.

 

julissarodriguez - June 6

Hello Fantod.. thank you for replying.. I am going to insist that my doctor prescibes me either Lyrica or Savella and try those meds out. Honestly this condition, as you may know, can have good days and bad bad ones. Today was a bad one.. I spent most of my day in bed, sleeping. To answer your question about sleeping, I hardly ever get restful sleep. I am going to ask my doc to give me Elavil, or Ambien. I have taken both of these in the past but prefer Elavil. With Ambien I had episodes where I would wake up in the morning and completely forget what I did the night before, i would have no memory at all, and that scared me. That is scary... I would try and try to remember any little piece of my previous night and i couldnt, so i stopped it on my own. That was years ago though.

So like you said, that may be what is mostly causing my flareups. Also, my oldest son always makes little remarks like " Oh God, now what hurts mom?" and not only him, but other people too. I hate that, no one around me has ever experienced anything like this, so sometimes it makes me feel that they think im making my pain up. Just the idea of having this condition for the rest of my life depresses me. When I have told people that i have fibromyalgia at work, they look at me like they think Im making it up. I have never ever missed a day from work due to my pain. There have been days when I can barely walk but I tell myself that I must get up, that I cant allow this condition to take over my life. I work at a bank, doing customer service. I sit down about 7 1/2 hours a day. there are days when I sit there in so much pain but i keep working to support my kids.

Thanks alot of responding and for listening to me vent about how this fibromyalgia disorder has affected my life...

Julissa

 

Fantod - June 6

Julissa - Ask for Savella first. It seems to have less side effects than Lyrica especially in the weight gain department. And, it is critical that you get back on some sort of sleep aid.

As for comments made by others, this is a common problem. Pain is subjective. Some people simply refuse to acknowledge something that they can not see. I want you to know that Fibromyalgia (FMS) is recognised by the the Centers for Disease Control, the World Health Organization and the National Arthitis Foundation. To get your family and friends on board, there are a couple of things that you can do. Go to Amazon and order the "Fibromyalgia for Dummies" book. It has good basic information like any of the other dummy books. Read it yourself, and pass it around. If you don't want to share this site with others, go to the National Arthitis Foundation website and use the "search" function to find the section on FMS. Send your family and friends a link. Knowledge is power.

I know that having to work, raise a family and take care of your own needs has to be so overwhelming. I am completely disabled due to FMS and some underlying health issues. I would like to be more active but it is just not possible. You can ask questions, vent and contribute anytime on this site. This is a nice group of people and we are all here to help each other. Take care and good luck with your appointment.

 

julissarodriguez - June 11

Hello. Just wanted to let you know that I had my appointment with my doctor on yesterday. As I mentioned before, I was taking Ultram(Tramadol) 100 mg or more every 4 hours as needed for pain, i was also on Cymbalta (highest dose)for FM, and mild muscle relaxers. Yesterday, after seeing how much in pain i was in, she changed all my medicine cocktail combination. I was told to first add in Soma muscle relaxers to the already cocktail I was on. If that didnt help after a day or so, then to stop Cymbalta and start taking Savella. I was also give Norco, or Hydrocodone 325mg to use as needed for pain thru out the day.
Last night I started the Soma, and it made me feel loopy but didnt help with the pain. I fell asleep quicker last night but no real big difference painwize. Today, I took Hydrocodone in between by Tramadol, and that helped some what , but not how I expected. Tonight, I took Soma, and Hydrocodone hoping it would knock me out and I could finally get a long waited full night of sleep. To my disappointment, the muscle pain woke me up from my sleep. Its about 3am , and Im in one of the most painful flares Ive had in months. I dont know if this new combination is going to work. These meds are strong from what the doc told me. Why arent they working on me? I am running out of hope here.. I hate to think I am going to have to carry or live with this disease for the rest of my life...

 

Fantod - June 11

Julissa - I'm sorry that you are having such a difficult time. Once a chronic pain cycle has started, the harder it is to stop or manage. You are going to have to allow some time for these new meds to work. It could take a couple of weeks or even a month or more to notice a difference. I know this is not what you want to hear. FMS can be very difficult to manage and your situation is a prime example.

Have you considered seeing a pain specialist to see if they have a different take on your situation? You can call your local hospital physician referral service and ask them for a recommendation.

I know that you are completely miserable. Things will get better. Hang in there. We are all here for you. Take care.

 

appleannie - June 11

Julissa,

I was a little iffy about lyrica, so I did hours and hours of research. My doctor and I decided yesterday that I am going to try Mirapex. It's a medication that's just been approved to treat fibro that was historically used to treat Parkinson's. Scientists have found that Parkinson's and fibro share some pathological aspects. You can google fibro/parkinson's/demonstrable pathology and find some good info. I couldn't post the link here.

It's pretty fast acting- I just started taking it yesterday, and my energy levels are a lot higher today. I just had trigger point injections yesterday, so I can't comment on how it affects my pain yet.

 

Noca - June 11

Dilaudid is the only drug that takes the edge off my pain. I take 16mg a day. The rest of my drugs I'm not sure do anything for my pain. I start gabapentin today at 300mg.

 

fancithatt - June 13

Hi Julissa, I use Savella and I have had good results with it. I tried Lyrica and Cymbalta but neither one did anything for me but drive me crazy lol needless to say I didn't do well with their side effects. Good luck and remember your dr works for you and your this site is a great place to come to.

 

julissarodriguez - June 13

Hello everyone .. thanks so much to everyone for responding. I always look forward to coming here to read the responses and let you all know whats going on with me. Like you all have said, we are all in this together. Well, I has been a few days, and the norco and soma have helped. I also decided to stop cymbalta, and start taking savella. I took my first dose of savella tonight. I will let you guys know how this whole thing turns out for me. I know this may sound a but foolish, but I hate to think that I am taking narcotic pain medications. For years, I have taken only Tramadol. At first, I was taking Tramadol 50mg, one every 8 hours as needed. Then I had to increase it to 1 every 6 hours, and so on. A few days ago, I was taking at least 3 or 4 every 6 to 8 hours just to feel some pain relief. This is when my doctor decided to add Norco or Hydrocodone 325mg, and Soma into the cocktail. I am so afraid of ending up hooked on these meds, but at the same time I really need them to help me with this unbearable pain. Have any of you all ever taken Norco and or Soma? Did you all notice any signs of dependancy?

Julissa

 

tooolgrl - June 13

Hi there Julissa, I am so sorry you are hurting so badly, I totally empathize with you, as my pain is a 10 lately all the time. My lower legs and back are usually the worst for me. Then my ribs hurt and if anyone touches me I hurt as well. I take tramadol as well, but I take 4 50mg pills at night, as well as a gabapentin, which my doctor just started me on, and 150mg of trazadone. During the day I am on wellbutrin and lexapro. I am still in horrible pain all the time, and still have trouble with sleep. I wish I could help you more but just wanted to say hi and hope there is something out there for us pain sufferers. I go back to my doctor in a couple weeks and am going to ask her for something better as it is increasing difficult to go to work..Let me know how you are..Sandra

 

julissarodriguez - June 13

Hi...First, I would like to vent. Today is a horrible day. I woke up and my head feels groogy..I cant think, if I try to think about something, it makes my head hurt more. I also have severe pain running down my legs, its one of the worst days I have had recently. I feel like I cant get out of bed..I just dont have the energy to get up. I lay in my bed and tears just run dowm my face, I just dont understand why ...

 

Fantod - June 14

Julissa - I hope that today is a better day for you. Take care.

 

julissarodriguez - June 14

Hello Fantod.. How are you? thanks for always replying. Yea, yesterday was very bad for me. I stayed in bed almost all day, and after the meds kicked in, I managed to get up and do a few things, like cook for my kids. They loved it! :-)

I hate to sound like a "complainer", but these meds that my doc gave me are making me sick. The pain is better (today,anyway) but the nausea is bad. For example, last night I drank my Tramadol, one Norco,Soma, and Savella. This morning, when I woke up, I felt nauseas, and groggy. I made it to work (im here now), but I still cant "think". My head feels "foggy". I dont know if that is a new symptom of FM, or the meds she has me on. What do you think?

Julissa

 

fancithatt - June 14

Hi Julissa, I hope you are feeling better. I take Savella, soma, and darvocet. The soma does make me groggy so I try not to take it if I have to drive or I take it at home or going to bed. The Savella has not ever made me feel sick to my stomach. I do know from experience that I can't take Norco because it makes me sicker than anything. Dr said I was allergic to it. Changing so many meds at one time makes it hard to track down which is making you feel bad. Did you step down from the Cymbalta or just quit? Because that can make a difference too. I hope this info helps you some and I pray for relief for you soon.

 

julissarodriguez - June 15

Hello fancithatt ,

Actually my doctor took me off Cymbalta cold turkey,and started me with Savella. Im sure youre right. It could be that. My body was used to taking Cymbalta and Tramadol only. now, Im taking Savella instead of Cymbalta, Tramadol, Norco, and Soma. I am going to take half the dose of Norco, and Soma, and see if that makes me feel better. My doc told me that I would feel miserable or worse than normal for at least 2 weeks before I would see improvement. So, i guess I will let you all know how that goes.

So, regarding Savella, has it helped you ? What other meds were you on before trying Savella?


thanks,

Julissa

 

Fantod - June 15

Julissa - I think that you are going through withdrawl and experiencing the side effects of new medication. It takes time to get all of this out and into your system. Hopefully, in a couple of weeks, you'll start to notice an improvement.

Thanks for asking how I am, I appreciate it. I'm having some trouble with fatigue right now. It seems worse than usual. As you know, you just have to go with the flow. Keep us up to date on how you are doing. Take care.

 

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