Reaching out!

I just can’t express just a miserable I am. Yesterday I actually had a good day, I did not overdo it or anything. Last night it started… The nerves into hands a feet driving me insane, robbing me of precious sleep. This morning the migraine started and I feel so much over-sensitivity and overwhelming pain in my ankles and feet and legs. I sometime wish I could rip them off. I have been weaning myself off meds and am mostly on Lyrica and tranzaidine. But today the pain was so bad I had to lapse back and take the pain meds and Xanax. I know I am suppose to keep track of every food and every pain and/or feeling. But when I get this bad I am so restless and want to throw this stupid phone out the window. In my pain and misery I decided this time to reach out instead of balling up in bed rocking myself and moaning wishing This would just end. I could use any comfort. I am just lying here crying like a stupid baby. Sorry I know we are to encourage each other but I can’t today

Is the pain from the fibro or from the withdraw of the meds? Before I was dx with fibro I had a neurologist giving me Vicodin. He said to take 1-2 every 4 hours. I took 1 every 12 hours. I am very sensitive to meds, which through all of this I have learned. I didn't know it then. But I thought I was taking less than I should and that I only took it as needed as I was taking so little. When the Rhuem diagnosed me, he took me off of it. I felt the most horrible pain. I asked the Rhuem about it and he said I would feel better once the meds got in my system, but I was not having withdraws. I asked the neurologist and he said, oh you're in pain, just take more Vicodin. My mind was telling me that neither one was listening to me and that I was addicted to the Vicodin. I had taken it for 3 months 2 pills a day every 12 hours. My body knew it and needed it. I ended up talking to the pharmacist who told me that I most certainly was addicted to Vicodin and to ween myself off. So I did.

Instead of taking it at the 12 hour mark, I pushed my body to get through the pain and I took it at the 13 hour mark. My body thanked me. Each time I waited just a bit longer. It started to get easier and I finally got off them. I didn't want to depend on a drug that was really making me feel worse when it wore off. I thought I was going to die the pain was so bad. The fibro hurts, but the pain from my body telling me I needed that drug hurt more. And I wanted to be there for my kids, not be a zombie like I had been for 3 months. (this was years ago.) Anyway, I gave up the hard drugs. They didn't really help me. They made things worse. Really gave up most drugs and just take vitamins now. I am going to ask for some muscle relaxers just to have on hand in case. If your pain is withdrawal then you need to ween yourself off, not just quit. You will feel terrible.

If the pain is fibro, I'm sure you have heard this before, but, drink water, take vitamin D-3, magnesium, CoQ10, MSM, B-12. I also take St. John's Wort. It really made a difference. Take a bath in Epsom salt, this gets magnesium into the body through the skin. I like Dr. Teal's lavender salt. It relaxes me and puts me to sleep, so do it before bedtime. I hope you get to feeling better. The flares are so hard and they rob us of so much.

Thanks guys, I have been going through withdrawal trying to get off the meds. I just started to feel human again after all the withdrawal craziness. Now what I have seems like my old fibro nonsense I have not had in awhile. I know I should get up to take the Epsom salt bath but just can’t bear getting up. I will have to get the vitamins. I do fear the mental state will be an issue. I heard tramadol has something in it that helps with depression. I am going to put the phone down for a bit in hopes to find peace in sleep

We've all had those days! Days were crying and trying not to scream because the pains unbearable. I'm glad you reached out! It's what we're here for! =) I'll be praying for you, hope you get some sleep tonight and are feeling better in the morning!!

Gentle Hugs!


Ascarlettrose, you are anything BUT a stupid baby! You were able to form thoughtful ideas about your pain and commit them to "paper." There is no way on earth that I could do the same thing when I hurt like that, absolutely NO way. You're stronger than you realize!

I think that you may have some "throwback" days where you have to get the old meds back for a day or so. Getting off pain meds, Lyrica, Cymbalta, some anti-depressants can be extremely difficult to do from what I've read. I've even heard of a few people who went to rehab to help get off the opiods, etc.

Just remember that every day without them is one step in the past for them, as you look out your rear view mirror at them. If it seems too difficult to get off them, may I suggest that you look up past discussions on the matter by going to the top right corner where it says, "Search Living with Fibro"? You might find some good insight on how others have handled it. Or else check out discussion boards on other fibro sites. But please make sure you check with a doctor before taking anything, etc.

Wishing you all of the best on this!

Gentle hugs,

Petunia Girl

Amen to that!

That's a good idea about waiting a little longer each day to take the Vicodin. I'm glad you were able to get off of it, KJ, and be a lot more "present" with your kids. Pretty scary how easy it can be to become addicted to it.

Your supplements sound healthy and helpful but it might be a good idea for ASR to ask her doctor or pharmacist if they would interact with anything she's on, especially in regards to the St. John's Wort, in case it can cause Seratonin Syndrome in conjunction with some of her other meds.

Dear Scarlett,

I checked your profile to see which drug you were talking about discontinuing. Is it the Tramadol, and if so, is there a reason you are stopping it, if it is working? I know it could very well be a side effect, that is why I ask, and why I no longer take it. Is there a plan to replace it with something else, since the pain is returning?

Sometimes we don't realize just how much a med does for us, until we stop taking it!

So sorry you are going through this, regardless of the reason!

Sending some love,


Thank you for this post. I had meant to say this. Especially with the St. John Wort. Somehow I forgot. I didn't take anything with prescribed meds except the vitamin D-3. I didn't start the other vitamins until I was off of all meds. I do like to have a script for muscle relaxers just in case. I don't have one right now, but I want to get it again. I knew I needed to say talk to your dr. before taking anything. Sometimes this fog really gets in the way. Glad you had my back, Petunia Girl.

We aren’t here just to comfort; we are here to understand, to comprehend, to relate. I relate rose. I even have a baby monitor now in my room and in my boyfriend’s room. I sure can’t sleep with anyone when I’m as miserable as I get. He knows to come when I’m crying or screaming. He’s partially deaf and has his TV so loud…

Do not be ashamed if you have to use your pain meds. Pain makes us crazy. I refuse to be curled up and crying anymore if there are pain meds. I can’t stand it. I encourage you to see you dr and show them this post Rose and say you have to have relief.

St. John’s Wort can be dangerous if you are on any psychotic meds. You really need to check with your dr before taking it anyway. No one needs B12 unless your body doesn’t absorb it; otherwise, you just pee it out. I have to take the shots because I don’t have the part of my intestine that absorbs it. Your heart can be affected by Mg. Just be careful.

I have not personally wanted to stop taking my meds but since I moved to Florida the dr I am going to is lowering my dose of gabapentin from 2400 mg daily to 900 I now have flares everyday I am in so much pain some times I wonder how much more I can tolerate I am holding hope for another dr to prescribe Lyrica with it or up my dosage I handle the body pain along with pain meds but the burning drives me insane.
I really hope you find something that works for you or if getting of meds is your goal I hope you accomplish it.
Sorry about my ramblings up above I just want you to know you aren’t alone. I often feel defeated of it wasn’t for my kids I would probably climb in bed and never come out.
I really hope things get better:)

I’m so sorry honey. We are here for support, on good & bad days. This illness is terrible & whom better to vent to than people like us who truly feel your pain? I pray that your pain subsides & you get a good night of rest.

Dear Scarlette

Just think for a minute.......if we are to support each other that implies that we are going to need support. Hopefully not all of us at the same time. Also it is important that we share with one another how we are feeling, what helps us, what works against us. So, you have no need to be sorry.

I am so sorry to hear that you have been feeling so miserable! It seems so unfair. But it can take a long get diagnosed find a doctor that cares and believes us and will listen to work with such a doctor to find the right combination of meds to really help us. And all the while we are in agony.

And nobody wants to spend all or most of their time in bed, but truly I find that some days I am in bed most of the day. It happens to me when I have been out and about shopping and mixing with people. I am a people person and I enjoy the interaction, but when I have to struggle through the fibrofog or stand or walk very much then the pain won't let me sleep that night. Finally about 5 or 6 am the pain will ease and I will fall asleep.....hopefully. I have found this to be my cycle so I don't go out very often. I am only relaying this to you because I am wondering if you have found out what your negative cycle is?

Have you found anything that helps you? Massage? Heating pads? I have found that a small pad with lavender in it that I heat in the microwave helps me when I have a bad migraine and I must be in the dark. I lay this pad over my eyes.

I can imagine just how frustrated keeping track of everything because it hasn't seemed to bring you any answers. Unfortunately fibromyalgia is a strange illness lurking in our bodies often not responding to pain meds that they once did. So, our meds have to be tweaked or changed from time to time.

It seems that we are always trying something to give us some ease from our pain........and there are times when nothing seems to help and we have to ride out the wave of pain and when it finally subsides we are wiped and have to spend time in bed.

But your time in bed is times of agony. You see when I am in pain I cannot stay in bed because the pain at the trigger points is so acute that I have to get out of bed and sit in my recliner with a heating pad on my lower back and another one on my upper back and neck.

Does music soothe you? Have you tried it?

Have you tried any creams to put on your feet, ankles and legs and wherever you feel pain? I use Diclofenac 10% and it helps. You will need a prescription for this Another over the counter cream you could try is Arnicazalf(no English on the tube).

Do you have restless legs? I use the prescription Mogadon for that.

I hope something here is helpful for you. Keep coming to our community and I hope you are finding some comfort and support and encouragement. Quite a few people have responded to your Discussion so that means we care.

Gentle hugs



You are so right about weaning off the vicodin. Even Lyrica is one you get dependant and must wean off it. Some people do become dependant to drugs very fast!!....others it can take 10 x as long before and they can just stop cold to be safe do it slowly and observe to see if you are having any withdrawal symptoms. Go slower if you let your doctor know.

I also agree about epsom salts baths!! they really help as do my electric blankets and TENs. They really help me greatly even on very bad nights/days. Also try to watch great movie, read or listen to music something to help take your mind off the pain. Call a friend! Just something to distract your brain.

Also be very careful with mixture of lyrica, xanax plus narcotic pain medication.

Hello Scarlette rose,
Please try savella. If your doc will not give it to you find a new doctor. I felt like you, the savella has me feeling really near normal. I buy it in Canada. It runs aoubt .75 cents a day. In the states it is rarely covered and costs 5.00 per tablet. I swear to you it is great. Check out the blogs,
Gentle hugs.

Thank you everyone for your suggestions. Some I currently do others I will try. Sorry for no communication yesterday but it was so bad I could not lift my head without it sending straight to the toilet to throw up. I have had the restless leg the whole time through this nightmare. Talk about wanting to rip off an appendage. I feel a little better today. Still have the migraine but I back on the pain meds. Disappointing!!! But a much lower dose. I am going to ask for the Savella this time. They gave it to me before and I went as far as filling it and then I threw it away. I have an almost paralyzingly fear of trying new prescriptions. They have given me several new ones and I just tear up the script when I can’t convince myself to try it. My biggest fear is that I will die trying something new. But at this point it would be a relief so in guess I have reached the point of trying it. I am hoping if I keep up with the pain meds I will be able to get out of bed. The kids are handling Halloween but I did want to try and sit outside with them. I do hope to get some sleep. I have been in bed for 3 days and nights and have barely slept. Thank you so much for your support. The kids will come in and look at me to see if I am alive and my husband gives me the helpless look like he has no clue what to do. Of course I don’t really know so I can’t help him help me. So to keep me going I would read on this site. So thank you all for helping me keep going when I want to give up. Pray I get some sleep today. Thanks again,

First off stop feeling ashamed of taking your pain meds and take them without concentrating on them so much I know that may sound blaise but doing that all the time will burn you out and take up energy that you could use to keep track of something you enjoy ,instead of constantly having to concentrate on how ill you are,it is not as if the balance of meds will be a cure,listen to your body if your in pain something about it if not,don't worry about the meds your body will tell you when you need them. That is a good thing to do occasionally but your very words you are using tells me you are burning out on it. Even Doctors don't understand the real nature of a chronic debilitating illness such as this one and the toll it takes on our lives,we can't work anymore and it still like we have a full time job seeing doctors and keeping track of everything hoping to "cure"it and feel normal again,it doesn't happen except if we are very fortunate for very short periods of time. So unless you are in a lot more pain or have other new symptoms ,you canbasiclly just make that a ditto on paper or in your convestion m,and mind as to what is going on with you at least until after the holidays,because they are almost upon us and you need to conserve energy to get through those,even healthy people do that .To us it is far more important,as we have so much problems with fatigue as it is that anything extra takes us out of action sometimes fr days and you wanrt to be able to enjoy as much of the next three months as you can as they can be what gets you thourgh till summer comes with it's heat.Good luck and be gentle to yourself,you deserve it.

I dunno what to say because this is exactly how i feel and i don’t know what to do. You aren’t alone at all. Hugs to you and I’m going to say a prayer. I promise. As soon as i log off. Im glad you reached out. That’s why we are here. I know i don’t know you that well but i have a big heart and i love you. I love all of you and i just hope someone can find a cure for this and give us some peace. We’ve had it harder than anyone would ever understand. You will get through this. Think about all the flares you’ve gotten through. This won’t get us. I know it hurts. I’m sorry. So sorry.
Feel better.