had... inj.'s, pain meds that worked only for short time? Well, I could write the book!I'm certain Dr.s thought I just wanted pain meds. I became pro-active, basically diagnosing myself. I took all the info to new Dr.I finally started on Lyrica,tai chi ex., better diet.Am on 75 mg 4 a day. Do I need to ask for higher dosage as I still have full body muscle spasms and nerve twiching through back,shoulders neck and finally my head. It hurts so bad I can barely breathe.I really wonder Lyrica should be increased.Is there a pain med. that can be taken when pain level is close to 10.Have prescription for 375 mg Naproxen 1 twice daily(useless)Very hard to explain fibro life to someone else.I want to have my life quality back, as I have spent too much time nearly housebound,not knowing what was wrong. Felt as tho was losing my mind(fibrofog). I am so thankful I have at last found my way to a better life. After much reading I find many are taking nearly twice my dosage. Could I find more relief if Dr. OK's higher dose.What are other things I might add to my routine? Would like to hear from other fibro folks. Dr.'s are new at this in my area. How about acupunture or other therapies?.I am desperate to get back to my garden after years.Does weather(southern IN. cloudy, wet, miserable-depressing) play a role in fibro?
Fibromyalgia - struggling with muscle pain (twitching, spasms, mind & body weak from fighting)?
Question posted by 1fibronut on 13 Jan 2014
Last updated on 12 October 2017 by wmorast1960
9 Answers
I've had 12 surgeries on my belly and spent 18 months in the hospital. Soon after i got to come home I had 2 Grand Maul seziures within 2 weeks on each other. The docs say it was from the pain, stress and trama of the surgeries. Since then I have had problems with weak muscles and body pain. Nobody seems to know how to help me. I went thru the whole thing with pain meds and couldn't deal with it. Right now I'm on 800mg of gabapentin 3 times a day and 5mg valium 2 times a day and was just given 25mg Amitriptyline at bedtime. I still have the pain and muscle spasms. I don't know what to do anymore.
I'm new to learning about fibromyalgia as well I'm also having the spasms in my feet and legs, when sitting my hands go numb. I'm taking gabapentin 300mg x2 daily But taking the medication for two months now and feel like I'm getting worse.
Hello sparker2986. There is scope to go up on your Gabapentin but first are U taking a muscle relaxant (MR) for the muscle spasms which U do get with Fibro (FM). It is common to be on a MR. Personally I am 2 different types. Also drug therapy as to be combined with muscle treatment such as Hyprotherapy, massage or acupuncture. This should be done with a physical therapist as it should be a graduated programme tailored around U – Take care
Hi, Fibro is he'll! I've had it for 30 yrs. amytriptolene has helped me the most. A psychiatrist that knows about these drugs has helped me the most. I have to take 5. 50 mg at nite. The dr will help u with the right dose. It will make you sleepy in the first few weeks. But thAt gets better with time.
1fibronut,
Sorry you are in so much pain. I was wondering how old you are and if you are seeing a PCP or a Rhemy for the fibro? For your symptoms the Naproxen seems a very minimal amount for pain and the Lyrica a high starting dose to not cause side effects. Have you had any x-rays, CT's, MRIs and blood work to rule out other conditions such as arthritis, back, autoimmune and thyroid problems? Stress can also play a big factor in pain level.
Problems with your thyroid (fatigue and brain fog) and back (muscle spasms,nerve, neck and shoulder pain) can cause similar symptoms as fibro. Does anyone in your family have fibro or similar conditions? Doctors should do thorough history and physical exam.
Everything my mother had I've had only at an earlier age. Symptoms started in my early 50's and took several yrs for the fibro dx. I'm now 64. Fibro is still a mystery to Dr's who either don't believe in it or don't know how to treat it. You have to be proactive as you stated.
Another thing to help you and your doctor is to keep a journal with your pain level and other important information such as your activity, food and weather conditions. I live in Mich which has it's share of gloomy changing weather that factors in my pain level. Also mention how long it takes to get relief from your medication and how long it lasts.
For me the fibro goes hand in hand with my osteo-arthritis. I'm on Norco 10/325x4 daily for pain from arthritis and spinal stenosis. I take Prozac 20mgx1 for depression from the chronic pain, Flexeril 5mg x3 for muscle spasms in shoulders, back and legs. Klonopin as needed for anxiety, Ambien and Lyrica 75mg at bedtime for the fibro and arthritis which makes it hard to get a good nights sleep. Prilosec for ulcers developed on Celebrex and Armour for my thyroid. During an 8yr time period I have had 4 shoulder surgeries,knee replacement, carpal tunnel and ulna nerve release, bunion, gall bladder, thyroid and 2 cataracts removed. We need to be able to get pain relief without being made to feel like drug seekers. The more evidence you have in tests and exams the more likely you're able to get the help you need. Also follow your Drs advice in treatments and medication. Allow enough time to see if his treatments help. This will show the dr you are willing to listen and give his recommendations a try before asking for something stronger. If your PCP is uncomfortable treating your pain, have him refer you to a pain management Dr. As your needs change so should your doctors plan to keep you comfortable allowing you to maintain your quality of life. These are just some thoughts as I've experienced similar conditions. Hope you are able to get some relief and get back to your gardening. Good luck!
Linda
Hello Fibronut and a warm welcome 2 DC - One has 2 B proactive with this diagnosis and undertake ongoing research as the condition is so misunderstood even by Dr’s. Clearly the Dr Feels that U do have Fibro (FM) as Lyrica is used to treat this condition. I must warn U that U will gain weight and possibly crave sugar. I think that U may also have a condition called Chronic Myofascial Pain (CMP) as CMP alone can cause all the symptom that U are experiencing plus muscle twitching occurs with CMP. I have both conditions but I had CMP 1st for 9years then developed FM in the last 3 years. All too often people diagnosed with FM have CMP also, but the symptoms of CMP are attributed to FM. U have now described your muscle spasm in more depth. Has it been diagnosed as a full body muscle spasm? I had something similar when I laid down. I would get aggressive pins and needles that started in the soles of my feet and worked their way up my body.
I could not feel then past my chest then suddenly I would go stiff and could not move at all for about 5 minutes. This was a number of years ago now and it self-resolved itself. I think that it would be wise to have a neurological consolation If U have not had one already to rule out a neurological condition. I was advised to and they did a neurological exam, a brain MRI scan, an EEG and an anti-GAD antibody test to rule out "stiff person syndrome." Plus a condition such as Dystonia can be ruled out. I can understand why Smalltown37 as suggested Dystonia has I was a lot like this. CMP can cause movement disorder, muscle jerking and tremors. However all my neurological teat came back ok. FM & CMP can cause muscle spasm. Severe muscle spasm for me occurs because I have pushed my body too far. Fascia, muscles, ligaments and tendons with CMP are weak and the muscle etc gets contacted. Muscles, ligaments and tendons without CMP try and take over and get targeted with muscle spasm. A pain Dr can rule out if U have CMP. If U have FM only and or CMP then as others have said U need 2 B on a muscle relaxant. FM is neurologically based condition thus non steroidal anti-inflammatory drugs such as Naproxen is not advocated. Dr’s will prescribe Tramadol for pain. And a sedative 4 insomnia which is common with FM. U also should be on a graduated exercise program to stretch your muscles. Acupuncture, hydrotherapy is good for FM & CMP also. However if U do have CMP this will need to B treated first before stretching etc. Bruthd has covered Lyrica and weather. Devin Starlanyl site is a good place 2 continue your research in my opinion. With the right treatment an improvement to your quality of life can B made, but one must remember that there is no cure for FM or CMP, but the right treatment regime 4 U will make a big difference – Take care
i'm taking Lyrica too! 150mg 3 times a day, i think that is the max! and i'm starting to get blurry eyesight , going have to talk to Dr about it, also taking cymbalta, get your Dr to give you cymbalta see if that helps, the main thing to talk to your Dr!, good luck. i've have had fibro 25 years or more.
firewolf3251-25 yrs 2 long 2 suffer.Lyrica and blurry eyesight, that seems to be a problem 4 me 2, also weight gain. Can't wait to see Dr.-another week.
Hello firewolf3251 and 1fibronut. I live in the UK and the maximum dose for Lyrica is 300mg a day. I believe that it is the same in the US. C your Dr if it is affecting your vision as this is clearly an undesirable side effect and there are alternative drugs for Fibro (FM). On that note you may like to research a drug called Flupirtine for FM. It is not licenced in the US or UK but is going through the process in both countries. I am on it as the clinic that I attends specialises in FM, Chronic myofacial pain and pain in general. They have a licence to prescribe it and it is very good; I have notice a great improvement in my FM from the first tablet (it works rapidly). The muscle relaxant (MR) component out shines that of Valium which is a very a good MR (but most Dr’s will not prescribe it) and the drug as a whole is much better than Lyrica or gabapentin, plus no weight gain or sugar cravings either – Take care
thank you Emeraldgirl i'll check on it, .
Your welcome
The spasms sound like what I went/go thru. I have Dystonia. Toe clenching is a biggie for me but do a google search for it. Many health issues cause Dystonia & plain old spasms & there is a difference. Also could be a side effect from your meds. U need 2 figure out pretty quick as Dystonia is a problem child all in its own. But not many drs are willing to say it is Dystonia. Do look it up watch videos and talk to dr about yr spasms
Dystonia?No 1 has ever brought this one up. Will research, thanks for info. Told friend I could see toes & fingers twitching-she told me I had 2 much time on my hands. Really,few people get it.
Only Nero will even think of it but a movement dr will think to check. If u watch the video & that's what u look like I'd definatly bring it up. Also there is a major difference between Dystonia & spasms/cramps. Even meds bring it on. But make sure you are open to exploring all health issues also. Having Dystonia is not something you want to have unless you are prepared for a MAJOR life change. Feel free to ask any ?'s.
Oh it is a neurological issue but so is fibro & other health problems. It is important to have an open mind when going into research about this. What the difference is is severity and amount of cramps/spasms
My personal search for Dystonia has relieved me somewhat, at this point my muscles twitch,no real pain there. Worse pain comes in shoulders, neck and head.After reading about Dystonia, my heartfelt concerns go out to anyone suffering this.
Good to hear. Just keep on mind there r many types. Keep searching for answers. There are a few drs still out there that care.
Thanks for your comment above to my answer. I wonder if Botox injections might help your toe clenching. My 24/7 toe clenching was caused by a stroke over 5 years later which Botox greatly helped. But even so, it might help you. I told the doctor that my toes were more difficult to sleep with than my worst migraine. The podiatrist wanted me to get a bone scan, but because it was caused by my stroke, the neurologist said no point in that. Since you have Dystonia, I wouldn't think that a bone scan would be helpful for you, but you might ask about it. The Klonopin has completely controlled my myoclonus--thank goodness. Otherwise there would be no way to sleep. Hope that your Dystonia is better controlled. All the best to you.
My Dystonia is severe & is also set off by needles. Botox is out of the ?! Too many ponts to be put in & not helpful. The drs discusses it. I ha a block done with real bad results. I have baclophen pump now. It is something that I have gotten used to to a point.
I don't know how long your pain lasts after needles, but the Botox to relax the toes takes 2 injections. But I do understand if that's too much. Sorry that you have such a severe case of it.
Hello The last few nights I have been kept awake by spasms in my leg/feet where I have to get up and walk around or massage my legs to stop the spasms. I take zanax at night, .5 which helps. I thinkwhen you are trying to sleep you are more aware of the spasm. The Xanax seems to help me. I am not so aware of if through through the day when I am doing other activities.
Well, Bruthd, I know just what you are talking about.Have you tried Ambien for sleep?I have that nighttime leg thing going on.Sometimes I can actually feel it going from toes,feet to legs-like somebody has filpped a switch.Last night,after having a great day, while watching Pacers play(my fave) I felt my toes twiching(tingling) and the feeling up thru my legsthen lower shoulder area.By half time I was writhing in pain w/a hot poker in my neck up into head.By the time I got down to my b-room-well didn't make it to bedroom my right side was weak, went to floor. thought I was not going to make it thru this horrible pain.Anyone would think I had lost my mind. Remembered to do breathing excercises.Helped.Didn't lesson pain, but calmed me down.So, I get what you are saying-and I don't know.Is it worse when we are trying to rest?
I'm totaling stabbing in the dark here, but I hadn't heard that fibro could cause "full body muscle spasms and nerve twiching through back,shoulders neck and finally my head". If it's not usual, again I'm stabbing in the dark, what about a muscle relaxant? Or what about klonopin which controls my muscle jerking called myoclonus? Someone please correct my ignorance.
Hello Sara U R not ignorant. U R correct Fibro does not cause all theses symptoms but another condition does. I have shoulder pain so taking time 4 me 2 respond 2 this question - take care
Myoclonus is another monster on itself. I agree u need a muscle relaxer. Ignorance can b a bliss! :-). But ignorant u r not
I'm open to all suggestions. Have never heard of myoclonous,but am researching it.My PCP is great and open to all discussion. Would like to think I can alleviate as much pain & muscle spasm soon enough to enjoy this year. I literally can't remember 2009-2012. Sounds horrible & it was. Prior pain doc focused only on immediate pain-don't get me wrong-as long as I took the meds I was out of pain but life was on hold.I thank God for my Children, my wonderful and inspiring Grandchildren and this great partner who (chooses) to put up with me The folks stayed with me, are with me on this journey. I appreciate your comments as they open new avenues toward concouring the beast inside me. Truly, Somedays I feel some sort of (being) is having a real good time at my expense by playing games with my muscles!lol
You are fortunate to have a supportive family. And thanks for getting back to me about yourself. Many on here do not have understanding from their family and in fact are criticized for their pain. I too am very fortunate to have a loving supportive husband. I also have fibromyalgia and a lot of other medical problems. Hope that you can find some relief from your muscle spasms. The Klonopin completely cleared up my jerking which I need to take every night. But the doctor will be more willing to give you a muscle relaxant since there is some dependency with the Klonopin which also is an anti-anxiety medication. But it also has cleared up my underlying feeling that something was wrong in my life when nothing was. Now after a major stroke, there is a lot wrong in my life, but I have gratitude for all that I do have after some years of mental struggling with it all. And the Klonopin has stopped the sudden times (almost like a panic attack, but not that bad), thinking that something bad was about to happen for no reason at all. It was all biological. You take care.
Hello Fibronut, I like your name as it probably applies to all of us who suffer from this syndrome/disease. You will have to monitor how you feel taking Lyrica if you increase the dosage. I take only 25mg at bedtime and find some relief. If I bump it up to 50 I get "hung over" from it. My dosage is low but I have been unable to take Savella or Cymbalta as they made me a crazy zombie which was worse than the fibro. For me, the fibrofog comes and goes. I know there have been articles written saying weather doesn't affect fibro but there are many of us who disagree with that. I find it is worse in very damp and cold weather. If you have an MD who is understanding that's a great thing. You're right, some of them think we are seeking pain meds and unless someone has experienced fibro it is very difficult for them to understand what we feel.
Also, many times we don't "look" sick so people think it's all in our heads. Stress definitely affects fibro. Pain meds work best for me at night but you have to find what combo works best for you. When the weather permits I walk 1-2 miles a day. Can't do impact aerobics as it hurts the joints. I've had this 25 years and am finally learning to do as much as my body allows and give myself permission to rest when I need to. Blessings to you. Keep the faith. Bruthd
So far I don't have side effects.I just can't handle that spasm that starts in my feet,visibly arching my toes,then up thru my legs my sides,arms and fingers twitch and my arms-the worst is when it goes to my shoulder,neck and my head. I will be sitting with the family, trying to laugh and just be with them and all the while I;m trying to figure out how to get this burning rod out of my body,I don't know how you can make it on 25mg. I really think upping my dosage,maybe adding Ambien could be the answer for me.
Related topics
lyrica, muscle spasm, pain, fibromyalgia, muscle pain, muscle, acupuncture, massage therapy, meditation
Further information
- Lyrica uses and safety info
- Lyrica prescribing info & package insert (for Health Professionals)
- Side effects of Lyrica (detailed)
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