I have been going through a lot lately and could really use some serious support.
Several weeks ago I decided to wean myself off the Lyrica because I was bloating and gaining weight. Not long after that I was walking down a couple of stairs and my calf muscle "popped". I don't know if its a side effect of comming off the Lyrica, but my muscles feel very tight. After about a week I was finally starting to be able to walk sorta normal- with a cane of course (which I have been using on a regular basis now anyway). Then, I was at the gym and dropped a 25lb weight on my foot (right where my toes connect to my foot), I broke at least one toe and everything was very purple!
I am having a really hard time baring the pain. Everything already hurt, now it the pain is so intense I am not sure how I'm supposed to cope with it. It is so bad that just functioning is hard. I gave up working over 10 years ago, so I don't mean functioning in that way. I mean functioning as a person; walking, moving, thinking, talking, typing....
Basically, I would like to know how we are suppose to cope? Has anyone weaned off Lyrica, and know what the side effects are? Is there any med that will work in place of it? I take Percocet on an as needed basis.
Hi Kim, I am sorry you are having a tough time of it. I highly encourage you to work with your doctor to come up with a treatment plan to try. Does your doctor know you are weaning off the Lyrica? It is really important to work with our medical teams - if they don't listen then it is time to consider getting a new team. Regarding your current pain levels, what have you tried to manage it? I find that taking Epson salt baths, gentle physical therapy exercises, controlling stress, and getting enough sleep work well for me most of the time. I also do a lot of deep breathing and visualization exercises. Please hang in there and keep us updated - and involve your medical team if you haven't already. Hugs.
I have been on lyrica for over ten years now its something I have ran out of at times or tried to go without at time and the fact that it works to numb nerve ends when you stop taking it all those ending start to fire again If this is something you are set on doing cut it down very slowly if possible to give your body a chance to a just the cold turkey is hard core painful muscle spasms and weakness cold sweats hyper sensitivity to temperature changes bad sweats it just wasn’t worth it to me I couldn’t eat sleep or even move just hurt a lil weight gain to me is worth the relief lyrica gives me also I take Siberian root 3 times a day look it up see if it might help you too traded in my pain meds for it works better then they ever did got a lot more focus and energy now Good luck honey Blessed Be Anna
It sounds like you and I have a lot in common. I have had to stop working. Have had fibro 10 years now. Even stopped driving. I also walk with a cane everywhere I walk. When I don't use a cane, I'm in a wheelchair. My muscles, even though they feel relatively strong when I can use them, are unreliable. I can't count on my legs to just not "give out" under me. I am doing so much in the way of fall prevention. I am certain the last thing I need is another painful injury on top of this crap. I'm so sorry you dropped a weight. OMG that sucks!!! In that regard, try adding some anti-inflammatory foods to your diet. You might be surprised how much cinnamon, ginger, and cayenne pepper can do to reduce inflammation from injuries.
I have many times like you are describing where I just am overwhelmed by the very thought of even getting out of my bed. I tried Lyrica once and since it didn't help me within 2 months, I came off it. I don't take anything for my fibro. I do take a combo of antidepressants. I also take 2 migraine preventatives. I have one migraine rescue drug and take valium 5mg as needed when I just cannot tolerate being conscious.
There are times when I actually cannot even brush my teeth, let alone prepare food for myself or groom myself very well. And forget about coherent talking. I stay entirely confused for hours at a time.
The only thing I can tell you is this: These drastic, extreme pain times don't last forever. Someday, somehow, it will lessen and you will be able to function a little better. Who knows when but, it is something to look forward to. Keep your eye on that prize. I love a quote I read once saying "The night is not forever". And that's true, right? The sun does come up, and that's true of us too. We have ups and downs. You are in a super low spot. Don't put pressure on yourself to try to do a lot. Don't beat yourself up because you are having trouble thinking and talking. I agree with Auburnm, try to control what you can control. I really believe in essential oils as relief and healing. Even if you can't sleep, make yourself rest. Deep breathing. I have a magic blanket which has made a HUGE difference for me. My nerves crave weight against them. I used to pile on like 6 blankets. You should check this out since it sounds to me like we are very similar in our severity. Most of the folks I talk with don't have to use canes like you and I do. Here is the link for the blanket. It is pricey but, its not a pill with side effects and it works instantly. Its the best investment I ever made. I have a twin sized one and mine is 16 pounds. You figure out how much weight you need from a chart and whatever size you want. Can choose fabrics also. http://themagicblanket.net/index.html
I so hope something here helps and you get some relief soon. I have been where you are and it is frightening to think you cannot cope with life. But don't lose confidence, you can do it. It is crazy hard and miserable but, you can.
The rough times make it all seems so hopeless. I'm sorry you're going through so much. I came off Lyrica about a year ago. It was a horrible experience. I was having some very serious side effects from blurred vision to congestive heart failure. Vertigo and dizziness. I'd suggest not working out until you are sure you are stable that way. I don't understand why your Dr. didn't offer you an alternative. I take Cymbalta, while it doesn't help as well with the pain it does help. Also I use Tramadol rather than percocet it seems to have more holding power.
As far as functioning that gets better my mind was very cluttered and confused when I withdrew from Lyrica. It made me seriously ill. Many years ago when I gave up drinking I didn't have nearly the issue I did coming off of Lyrica. It caused more pain, made me dizzy, sick to my stomach, I lost my appetite. Not a huge issue being that the Lyrica made me gain seventy pounds, but nothing tasted right. They also put me on Lasix for the bloating it made the swelling go down. I lost twelve pounds of water in a day. It took a few months to get passed it, but I'm getting there. The Cymbalta really does help. So did seeing a pain specialist. He came up with therapy to help relief the tension , to deal with the hot spots and so forth. Recently he put me on a topical for the hot spots that has worked miracles. It's lidocane based with bacofen, ibuprofen and gabapentin . I probably didn't spell any of that right. At any rate it's a compound. Medicaid even pays for it. You rub it in to the worse areas. At first I thought it was a long shot but it works. I work with Dr. Engen in Wheat Ridge Colo. A brilliant doctor with an amazing attitude. I've also been using a T.E.N.S unit which is helping disrupt the pain. For me it's become a matter of scheduled pain management. I agree with Auburnm if you don't already have one put together a good medical team. Make sure all the doctors you work with work together. Most importantly keep them in the loop. If you are having a problem don't try to tough it out. We all do that, we don't have to. You have the right to take care of yourself. I hope I've helped even a little. Be Blessed.
Hi Kim, sounds like a really tough time you are having, sorry to hear that. I have to agree with Aubumm, with your medical team. Both injuries that you spoke of I think should be seen by your medical team. I do not take or have taken Lyrica but I don’t see these injuries as side effects of discontuning this med. although I am not real sure what you mean by “popped” with a muscle. I would think that popped would relate more to a joint. As for your foot, I hope you were just attempting to move that weight at the gym, that is quite a bit of weight for a FM person to be lifting. I would see my medical team on this as well, but also ice, ice, ice it!
I am weaning off of. Savella, almost off at this point for similar reasons weight gain and sweats. It was a good med for me other than these side effects. All meds do not have the same side effects on every person. Talk to your doctor about a different one.
I am so sorry that you are going through this. As someone who someone that has had fibro for 28 years, I have been through a lot of Drs and different treatments. Lyrica was not right for me either. I had 3 strokes and a heart attack while on it. My husband thought he would lose me for sure. I also had complex migranes. I tell you all this to let you know, that some meds are just night right for the fiibro group. I have move from my home in Louisiana to a home in Tn my husband bought us for the summer. I spent the money and got the best mattress on the market. I know everyone can not do this. But getting away from stress and sleeping well are major factors to how your fibro reacts. Also, whatever brought it on is another thing to look at. I find that keeping a journal and making myself realize what happen is passed now I look after me. Calm youreslf. Get some organic products that will help you sleep. One I use is very cheap but very good. It is call lavender night lotion. You get it from Avon. It will actually relax you. In the morn after a shower, use Avon energy lotion, which picks you up. You will find sense of smell does a lot. I am not one for even the least of exercise, because my body will kill me the next day. No matter how many times a week or how light I suffer. I allow myself to go to bed when I am ready if the restless legs are not there and get up when I want. Talk to your Dr. if you need to ask for a fibro specialist. I got lucky. My Drs wife and partner both have fibro. He is very knowledgeable. Enough to tell me no more meds, I am allergic to them all. But there are new things coming out all the time. Look up some of the new studies, ask your Dr about them. But I must say this. God gives me a lot of help. As a Pastor, I lean on Him every day. When I lean on man everything falls through. Get closer to the Lord and ask for some help. He will never fail you. My prayers will be with you. Tender hugs and love.
Kim
I’m sorry that you are going through this. I too was once on Lyrica and had to come off, but my doctor at the time did not have the good sense to reccomend a gradual weaning, so I can’t really help you there. I do remember that coming off was nearly as bad as being on it tho & it took me a long long time to lose the weight. The swelling was very painful from what I recall. My doctor immediately placed me on gabapentin afterwards, so I’m not sure what was withdrawals and what was new side effects. I will say that neither worked for me.
I do hope that you went and had your foot checked out and have been following protocol by keeping it raised, taking anti-imflamitories & icing it (20 on/20 off).
As far as functioning, it’s a personal journey & I don’t know how long you’ve been on it, but here are some things that help me, but please consider that I also do not function well & accept the fact that I may never function right again, it’s a work in progress, you’re going to need outside help, and some days, weeks still really suck and I feel like I’m back at square one, but I’m not because I’ve learned so much.
Relaxation techniques. This is very important. Epsom salt baths (if you’ve got a tub), guided meditation (there are free podcasts that can help with this, self massage, relaxing music (pandora has a yoga station), gentle massage (it’s something they have to get special certification to do), easy hobbies (puzzles, cross stitch, crochet, coloring), and just mindless distraction (Netflix, Hulu, or dvr a ton of Here comes the midwife or 30 rock because Liz lemon is amaze balls).
Pacing. Break things up into very small (silly small) increments. Then rest when you finish one small thing. Continue. This works with exercise too. Set a kitchen timer. You are not capable of what you once were. It’s not your fault, but you must learn to respect your new boundaries.
Therapy. I’m not a fan of PT. but I also have cfs & am just too exhausted to bother. But I love my talk therapist. I unburden & she helps me learn ways to cope & look at things in a more positive light. She is amazing. I also see a psychiatrist, but I’m not so hot on her, I only see her in order to survive (crippling depression & all).
Find a like minded group. Hey, this place is a great start! I will say try not to join a rolling pity party group or other negative group that makes you feel worse. It’s hit or miss. It needs to be supportive & positive. I belong to a couple really great ones that have made a real difference.
And education & research. Be smarter than your doctor. Trust me, it’s not hard. Be your own fibro specialist. It’s easier to challenge old and dumb ideas that way and stay involved in your care.
I hope this helped and wasn’t too rambling and misspelled.
Hello Kin,
I am not know why you are going off of Lyricabut after my experience of going off of cymbolta
I can speak with experience . Stay on it. Is the lesson I learned.
I felt it was no longer giving me much benefit although I was doing well on it.
I had been taking for a long time and likely forgotten how I felt off of it!
Have you just stopped taking? Or are you tapering off?
Is your Dr aware of you stopping? He needs to be aware and there to help you .
I have more to say but I have to go to work.
I will return tonight and will get on and tell you about my experience.
Oh my gosh I just skimmed the previous reply and it mirrors what I am saying at least what little I have read!!
Will return.
Hang in there. I going to tell you to stay on!!
It's tough always being in pain. Here's one of the many ways I cope with constant pain: I focus on my most painful area and concentrate on the pain. Then, I consciously send it to my little finger. I concentrate on the pain now in it' new spot. I thought this up in my twenties. I was expecting my first child. I thought Lamaze was stupid. I figured if I put my pain somewhere else on my body, it wouldn't hurt as much. It worked! So, I did a repeat performance with my second child. I arrived at the hospital fully dilated (10 cm) thanks to my now ex-husband who didn't want to be embarrassed by a false alarm.Then, I had to wait 45 minutes until Mya Ob/Gen got off the golf course. I waited patiently, pain free, until he came. This year I happened to see Montel Williams on Dr. Oz tell him he uses the method I used, only he puts his pain in a box. Try it. It might work for you.
Hi Kim. At first you need to know that Im not a fluent english speaker. Im very sorry for what you are suffering. Its very important that some doctor give proper advice. I used to take Lyrica but I didnt quit it in one day, it was progressive. Now I take Cymbalta 30mg each day. Now Im trying to quit the sleep medication (Clonac) but, again, progressively. Im not sure if this will work, only time will tell. I discover that to have good sleep its a key in this condition. I have many good days, some bad days and few very bad days. I hope you find the answers as soon as possible. Hugs, Daniela.
All the ladies gave you very good advice. So, I'll only add a little. Just know that there are a lot of people who are sending you good thoughts & energy. This is just a phase. I find the worst of it during my cycle (I don't have a period any more, but the body still has a cycle). Using a calendar to keep track of the severity (1 - 10 scale) can help you with future flare ups, thus preventing activities that make it worse on those days.
I also am sorry you are going through a hard time. A couple of years ago I had a very difficult time - my body just absorbed so much emotional stress (a situation that had been going on for almost 10 years) that nothing seemed to help. My doctor prescribed several sessions for "balance" physical therapy. This helped a lot as I was not walking straight and my balance was off. Perhaps this could be helpful for you. I learned about strengthening my core how to stretch, etc. so as to avoid falling and other accidents. As far as meds, I've tried many. I'm on gabapentin and some pain meds. But, I think it's time to make new adjustments - this needs to happen from time to time as the meds lose their effectiveness. Having a pro-active medical provider is vital. They need to work with you - best not to do it alone.
Please know we are here for you. Take courage. Our hugs and good thoughts are with you.
Just like Barbie just said, everyone is giving good advice. I am just like Barbie as I get worse during my cycle also and I have not had a period in more than 7 years, just something our bodies remember. I do not use any medications other than valium 5 mg when I get really bad. I use magnesium oil three times a day (really helps muscle spasms and calms you down also ) I also use turmeric (all natural anti inflammatory). I have been able to increase my exercise (walking) to about 35-40 minutes a day (that really helps, even though it hurts too). Let your foot heal before you do anything, and just remember that we are all sending good thoughts and prayers your way. You will have better days coming. Gentle hugs
I am so sorry you are having such a hard time. As if getting off Lyrica wasn't enough, dropping a weight on your foot--ouch!!! No wonder you are having trouble functioning.
I have no experience with Lyrica or any other fibro drug. I read so many bad things in here about them, so many people trying to get off of them, plus I am allergic to a wide spectrum is prescription drugs--I wouldn't touch any of then with a ten-foot pole! I did have to ween myself off of welbutrin years ago--not at all fun!!
Do you by any chance live in a state in which medical marijuana is legal? I do, and that helps more than anything. I take tramadol, but you are clearly higher up the pain spectrum than I, it probably wouldn't help much.
Coping is really hard when things s*ck, but I am sure you will soon have a easier time with it once the foot heals and that nasty drug is out of your system.
Are you eating a lot of anti-inflammatory foods? I find those help a huge amount. Dark leafy greens, especially spinach, plus broccoli, asparagus, fish like tuna and salmon, berries, and so much more. I know if I don't get my spinach every day I pay the next day. I am attaching a pdf listing inflammatory and anti-inflammatory foods. I hope it helps.
Meanwhile, know I am praying for you, and for everyone here, every day.
Hi did you come off the Lyrica with your Dr recommended titration doses. If you come down too quickly you can do more harm than good.
The pain relief you have come off is the the neuropathic one probably the most important one.
I know Lyrica gives so many bad side effects I have gone up nearly 3 clothes sizes and I feel awful.
You have hurt yourself when you thought you should be getting better. It’s a massive blow to you! Your feelings and your stress Levels all together making you feel depressed. Maybe talking to psychiatrist it has to be someone away from the family.
Taking drinks etc that help you lose weight which is all Plexus is entirely up to you. Costly not needed if you start with gentle exercise such as swimming, short walks and gentle stretches. Build up until you are strong enough to do what you want. A heavy weight like you dropped on your foot was way over the top to start with.
Keep calm keep healthy keep safe and use your Dr when needed. Val
Hi Kim, I'm so sorry about everything that has happened to you.I don't take any prescription pain meds.I've tried all of them while seeing my previous rheumatologist I changed to a hermit NP Kathleen columner.she said the meds for me wouldn't be good.Bentle stretching exercises and Aqua therapy d he recommended.I also do pacing,ice/heat,and if I need medications which is rare 1-2 a month I take 1 extradgte Tylenol every 6 hours and 2 Motrin every 4 hours it works.I also pray and read scripture it also helps.I play with my DoD Heidi and take her fir 6 walks EVERYDAY,watch funny movies and tv shows.I'm going to join The Daughters Of The American Revolution my grandmother was a member so I'm busy doing family genealogy.I hope all the advice will help and it be GOID to talk to your Dr and ask for their advice.
Thank you all for the good advice. It’s just what I needed!
Val, I wasn’t actually using the 25 weight. Even tho I have been going to the gym for several years now, I still use mostly 5-10 lbs on free weights. I workout with my Dad and was helping him put 45lb weights on the benchpress when the 25lb-er fell off the rack onto my foot.
Kimberly, you are right about the tramadol. I have tried it in the past and I may as well have. Taken a baby aspirin. Lol I do eat lots of greens, fuit, etc I watch my spinach intake bc I tend to retain water and I don’t want to end up with gout. I live in NY state and a law has been passed for medical marijuana, but not implemented yet. And sorry Val, but I would try it if it is available to me. It will only be available in oil for tho. I talked to my doctor about it and she thought it might help. So, in answer to your questions, I have been working with my doctors regarding all my meds.
I do have insomnia which doesn’t help matters.
again, thank you for all your help,
gentle hugs, Kim