Thursday, January 21, 2010 skeetelmore65, Community Member, asks

Q: Does Lyrica been attributed to retention of fluid in the body?

I am suffering with too much weight gain off of Lyrica. I want to know if Lyrica has the attibutions of making fluid retain in the body? I can't seem to get it to go away. I am taking Lasix, but it only has helped a little in taking fluid from my ankles, and has not taken it from my legs or my abdomen. I am having a tough time breathing and need to know if Lyrica is just not for me. I have been dx with Fibromyalgia and there has to be something else also besides Neurontin. I am also wondering if Topamax is a good candidate for it. I heard of its weight losing properties and would like to know if it can be used for Fibromyalgia?
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Answers (2)
Karen Lee Richards, Health Guide
1/23/10 2:18am

Yes, fluid retention and weight gain are two common side effects of Lyrica.  If Lyrica is causing you that much of a problem, I would definitely talk to your doctor about it.

 

Have you tried Cymbalta or Savella yet? If none of the medications approved for fibromyalgia work for you, there are still a lot of things that can be prescribed off-label that you might try.  Here is an article about all the different meds used for FM:  Medications Prescribed for Fibromyalgia

 

You asked about Topamax.  Personally, I wouldn't touch Topamax.  It has some really serious potential side effects.  Here is a link to a page on our Migraine site that has quite a few articles about Topamax.  If you'll scroll through the list, you'll see a number of warnings about possible side effects:  Topamax 

 

Of course, you and your doctor will have to make the final decision on that, but I want to make sure you understand the risks if you're thinking about it. 

 

I hope you can find something that will help you without such unpleasant side effects.

 

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skeetelmore65, Community Member
1/24/10 5:11am
Dear Karen, I am just so desperate in this situation.I have 80+lbs. now. I seem to be getting bigger and bigger.I even started taking the Foresemide(Lasix-generic).I am so afraid I am having CHF because I have had two docs now seem not want to rule that out.I am going back to the Internist Tues. to have some more blood work,but I am so miserable I can't breath too well.If I eat anything I get full feeling and not only that I have this burning all over my body.It feels like little pin pricks in different places all over, then it burns similar to a sunburn after you scratch.I have the Topiramate here already.I don't have a decent PCP.He seems to be sick and out too and I can't rely that he'll be there to take care of me.The last two times...well,one I went in and the NP saw me and told me that he had an emergency and had to go to the ER. Well, after we went over things and she came back with my presc.(gave me a 600mg.prs.for Neurontin-and I was concerned @ switching straight from my Lyrica to it)so I went to weigh myself and saw him ducking into his cubby hole.I thought he hasn't even gone yet and it had been 30-45min. or more since the NP told me he had an emerg...I hope he isn't avoiding me.Why? The next time,I got ready(in which is a task on its own)and the office called me right b4 I got out the door and they said he had another emergency.What do you think? I even called to make an appt. knowing it had been close to a month and I wear 75mcg. Fentanyl Patches and they told me he was out and didn't know when he would be back in.I am getting a bad vibe.I only have two patches left.I know you just can't stop those either.What do you recommend I doing?I did however get a referral to a NS,another one.I just am not going to give up on myself.I really feel that my problem could be corrected and should have long ago.I have been suffering since I had my surgery Feb.'06 and this is ridiculous.I am a very patient person and not mean at all.I am easy going and a good person.I just want to have some life.I have a pain level of @ 7-8 on pretty much a daily basis.It is so hard to keep going on this way.I am scared out of my mind.I will tell you what they have dx me with and see if that should be causing all the paralysis and pain(feelings of being stabbed/burned,punched/pinched,my muscles are disapearing from my legs(I think they call that atrophy and it hurts where it is happening-it looks like I have rings being carved out of my legs,I have these intense burning places like on my left breast(like someone dropped a burning object-maybe like a cigarette landing there,my skin is so sensitive all over to touch-badly).That is just what I feel.Here is what they say that I have:Fibromyalgia,Cervical-Lumbar-Hip/Joint DDD,Spondylosis,Myofascial Pain,Cervicalgia,CM(Chiari Malformation-6.5cm, had an ACD & F spinal diskectomy C5-C6. That is all I can think of off the top of my hat. I know this is aking a lot,but do you or anyone you know have a clue to what this might be. Please help me if you can.You have helped me a lot by just being there and I appreciate it.So, if you can offer any other info,it would be greatly appreciated. @ the Topamax,what else besides Savella,Cymbalta,Lyrica or Neurontin is there? I would be willing to try anything to get close to the person that I used to be. Thank you so much for your response.Take care and always...GOD BLESS.. Karen Reply
Karen Lee Richards, Health Guide
1/25/10 1:10am

Hi skeetelmore65,

I will try to answer as many of your questions as I can.  I have heard from other patients who have gained 80+ lbs. in a very short period of time when taking Lyrica.  And unfortunately, when they stopped taking it, the weight didn't go away easily.  They've had a very difficult time losing it.  So if your weight gain and water retention began after you started the Lyrica, I would tend to suspect that is the culprit.  Of course, that much weight gain, especially in a relatively short period of time, puts a lot of stress on your whole body and could possibly contribute to other problems.

 

As for switching straight from Lyrica to Neurontin, I would suggest asking your pharmacist about that.  Lyrica and Neurontin are both classified as anti-convulsants so it may not be a big problem – but I don't know that for sure.  Your pharmacist should be able to answer that for you.

 

I can see why you feel like your PCP might be avoiding you.  If he is, that is highly unethical.  However, even if we give him the benefit of the doubt and assume he really has had other emergencies, etc., it sounds like he's much too busy.  You need a doctor who can see you when you really need him.  It seems like it may be time to find another PCP.  If he's not available to give you another prescription for the fentanyl patches, ask his office who is covering his patients for him while he's out.  A doctor can't be away indefinitely without making other arrangements for his patients to be taken care of. 

 

If he doesn't have another doctor in his office and you have to go to somewhere else, you'll need to get a copy of your records to take with you or make sure his office has sent them to the new doctor because most doctors are not going to be comfortable giving fentanyl patches to a patient they don't know. If you don't have a pain management specialist, this might be a good time to start looking for one. 

 

I'm not sure what to tell you regarding other possible medications.  The link I gave you in my previous answer above covers everything that is normally used to treat fibromyalgia.  The fentanyl you're currently using is a lot stronger than is usually used to treat FM, but is understandable with your other diagnoses.  Have you ever talked with your doctor about an intrathecal pain pump or a neurostimulator?  These can often be good options when oral meds and patches no longer help enough.  Here is a link to more info:  Pain Pumps and Neurostimulators

 

God bless you, too.  I hope your appointment with the internist Tuesday goes well. – Karen

 

 

 

 

 

 

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skeetelmore65, Community Member
1/25/10 7:14am

Dear Karen,

     I want to Thank You first of all for the kindness and all the help you have shown in my situation. It takes a special person to care and understand to truly do what you have done for me. I feel so scared at times, but I know I am meant to do good things and I will carry on and that is because of good people like you.

     I think when it comes to my PCP, he is busy and I just think that he may not be the one who needs to be taking care of my medicinal needs. I am greatful for all the help he has shown me and has got me this far. He has given me referrals to NL and NS, so I can't say he is so bad. It's just frustrating not being able to even get yourself together to get to the doctor. It is so hard for me to do anything, but I do push myself to keep going. I am a very strong willed individual that is very compassionate as well. I want to get well so maybe I can help others find a good place to be in as well. I know I am not addicted to the meds that I am on, but I am dependant and that is a difficult place to be in when you live in a small town. It is so hard to find someone that isn't miles away to take care of you and I just pay dearly for those road trips. I just want peace and I know I will never be completely out of pain for all that I have been dx with, but if I can just get a happy medium...I'll be happy. Do you know that even the Mayo Clinic in AZ said that I was too chronic and they wouldn't see me. That is bad. It really put me at a disadvantage. I surely felt that they could have done something, but didn't even give me a chance.

     I am going to call my PCP early in the morning and see when he is going to return just to get through this month. In the meantime, I am going to seek a pain management facility. I have heard of a good one in Memphis,TN on Poplar. That is not too much of a trip for me to make and I could handle that once a month. I do also have a back up plan just in case he is avoiding me or my situation. I have an appointment with my old PCP that I saw as a child. He knows of my situation. I only chose the one I am seeing now because he is the one who told me of my last pregnancy and he is a good guy(also a DO). That does mean Doctor of Osteopath, right? I thought that would be good since he did know something @ bones.

     I have a question @ an old, well not that old sample of medicine that I received a yr. or two ago. It is Skelaxin. I have heard of it being good for Fibro, right? I wanted to use it, but it was given as I said when I was taking I think Percocette. The exp. date is also 12/09, so I figured it wasn't that old and could at least be used in case I needed it and it took a while or so to get my meds. I don't think that will be the case, but I always like to think ahead. Instead of taking my Norco for breakthrough, would it be okay to use the Skelaxin, since it is for rest and musculoskeletal conditions.

     @ the Fentanyl. I was going to request that he bring me back down to the 50mcg. and change them every 48hrs.,since I have found that to be the best thing for the people who suffer so badly on the third day as I. I agree @ being prepared as well to the records and seeing a new doc. He would have to be up on my situation before he could. I understand that.

     I will check into the Pain Pumps and the Neurostimulators. I thank you for all the help you have given me. May God bless you...always..Karen

 

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Karen Lee Richards, Health Guide
1/25/10 10:17am

It sounds like you have thought everything out well and have a good plan. 

 

About your Skelaxin question – I can't tell you whether it's ok for you to take.  That's something only your doctor or possibly your pharmacist could tell you.  I can tell you Skelaxin is a muscle relaxant that works by blocking nerve impulses (or pain sensations) in the brain.  Whenever you're thinking about taking another medication, you might want to check for possible interactions with meds you're already taking.  You can click on this link for a good Drug Interaction Checker

 

As for the expiration date, I don't think that should be a problem.  Some medications may lose a little of their potency past their expiration dates, but most are not dangerous.  For future reference, this article will tell you how you can store extra medications so that you can keep them fresh indefinitely:  Storing Medications Safely

 

Keep in touch and let me know how your appointments go. – Karen

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skeetelmore65, Community Member
3/ 7/10 2:36am

Karen, I just wanted to update you. I was taken off Lyrica bc of all of the weight gain and put on Neurontin and Topamax. My new NL told me that he thought I had Migraine. I didn't say anything, but knew that there was more to it than that. I had an episode to where I had a pain in my lower back and closed my eyes and also put my hands over my eyes. I saw something similar to a strobe light or rings/ripples of lights in my eyes. It scared me to death. I had to go back to see my NL and he now has a copy of my CT Scan to go over. I told him of my concern of what I was feeling. After he switched me, I felt like my body was on fire and this has gone on for 2 wks. and I am concerned that maybe I am allergic or something. He took me off the Topamax(25mg.) and he even commented that it was such a low dose. I wanted to stay on it bc I took it b4 for only a few days and felt great, and it also has a rep of people losing weight,in which I need bc now I weigh 199 and that is scary.

     I just wandered what u thougth of the situation. I feel like I have something bad. Maybe even MS or Mitochondria disease since my muscle are just disapearing b4 my eyes. It is painful too 4 them to do that. Can u help me in what u think would be a good regimen of meds to try to help me. I already take the Fentanyl Patch, in which, I hate, but it does work and seems to be working okay...except 4 the third day is usually painful.

     I know this message may be a little cluttered up bc I am tired and not thinking to well bc I am on fire. I don't know if Neurontin and Lyrica are that different. Could it be that it just isn't out of my system yet?

     I just want to get some of my life back. So, help me if u can. I would thoroughly and Bryan, my son, needs surgery on hid Jaw line.Jou take of urself and I hope u can jelp... Got to go...so tired and in pain. So, take care of urself and always FOD BLESS

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Karen Lee Richards, Health Guide
3/ 7/10 11:09pm

The visual disturbances you described (strobe lights, ripples, etc.) could very well be related to Migraines.  That type of Migraine is called Migraine with Aura and you can have all kinds of odd visual experiences.  You may or may not also have a headache.  I'd recommend you do some reading on our Migraine site, MyMigraineConnection.com and maybe even ask a question or two about what you experienced.  They have much more expertise when it comes to Migraine-related things than I do.  That may or may not be related to what you experienced, but it's worth looking into.

 

You asked about how different Neurontin and Lyrica are.  They're both anticonvulsants and have basically the same mechanism of action.  Lyrica is more potent, so it should take a much smaller dose to get the same effect.  That's supposed to help minimize side effects, but I've heard of quite a few people having problems with Lyrica's side effects – particuarly the weight gain – so I don't know how well that's working.

 

You said that your muscles were disappearing.  Have you had tests done that show they are actually deteriorating or is it possible they are just deconditioned from not being able to use them as much due to the pain?  I know for several years I thought there was something seriously wrong with my muscles because they just became weaker and weaker.  But I found out that the muscles themselves were ok.  I was just so limited in what I could do because of the pain that they had become terribly deconditioned. 

 

I'm afraid I don't know what else to suggest as far as medications go.  Have you ever looked into any alternative therapies?  I use myofascial release therapy and acupuncture regularly.  They have done more for me than most medications.  Here are links to more information about both:

 

Myofascial Release Therapy

 

Acupuncture

 

Hope some of this helps and you're feeling better soon.  – Karen

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deborah fay, Community Member
12/ 1/11 9:35pm

ok

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By skeetelmore65, Community Member— Last Modified: 01/09/14, First Published: 01/21/10