Home Forums General Discussion Now it's Fibro with Lyrica?!!!

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  • #299838
    Michele
    Participant

    I had my nose pressed up against the glass watching everyone play! Hope I can figure out how to get past my cookies feature next time!

    This has been a really rough couple of weeks for me. My last post included the discovery that a second round of blood work showed all inflammatory markers normal with one band of lyme showing up on a western blot. (I will send to Igenex next week for a confirmation…but I know my doctor is still thinking RA.)

    Today at a painmanagement clinic that I waited for weeks to get into, the doc prescribes Lyrica and says it looks like I have Fibromyalgia. Since every previous doctor said it did not look like Fibro, and I was just hoping for some help with pain, this really waylaid me. I did not expect another dx, just some pain management that wasn't vicodin and addictive.

    She also said to stop looking to seeking out tons of doctors because in some cases they just don't know what's wrong and won't say that. Get on with your life and stop obsessing about fixing yourself. Whoa!!!! What a message to give someone who can barely get around because of the pain.

    Why my joints and muscles hurt SO SO SO bad and I'm getting a different diagnosis with every step into the doctor's playground, I am thoroughly confused. Even my D levels are not conclusive.

    What is Lyrica anyway? All I know is that it is a “new” drug pharmies are pushing for Fibro. Is it a basic pain med. or not? Has anyone had success or bad experiences with this medicine?

    This is a cool board setup if only I can figure it out. How does one move those expressive little emoticons over?

    Hey Jennhere, I feel like throwing sand. Stop me before I get in trouble!

    Michele

    #309281
    DianeWI
    Participant

    Hi Michele,

    I was prescribed Lyrica about 3 years ago.  I took a total of 3 doses and quit.  I have a lot of IBS and GIRD and liver swelling and each time I took the Lyrica, I would blow up like a moose.  I was more miserable with it then without. 

    Its suppose to help FMS people and maybe it will help you.  We are all different and since I also have chemical sensitivities, I may be more at a disadvantage then most when it comes to taking drugs.  You could take it and have great results.  How do you know until you try?  Its worth that much.

    With the FMS, I really had a major turn-around with muscle and joint pain when I got on the Carisprodol, a muscle relaxer that I take at bedtime.  Maybe that could help you too.  It took maybe 3 months for me to notice a difference.  I can't honestly say that it helped immediately.

    I have been to pain support groups and boy I'll tell ya….when they start talking about not obcessing about our aches and pains, that is an immediate anger trigger for me.  Nobody knows just how badly one can feel until they are sitting in the group as a patient.  Doctors can often be a bag of wind in these cases.  Talk is cheep!  I feel for you on this one.  They can talk the talk, but we walk the walk and we are the experts, not them.  Need I say more?

    Hugs to you!

    Diane

    #309282
    Goodwife
    Participant

    Michele,

    Have you tried a naturopathic doc?  One could probably recommend  a path to follow that doesn't involve addictive drugs, etc.  For example, a woman from our church had terrible arthritis – not very old – 60 maybe – every joint ached.  She went to a naturopathic doc who, along with some dietary changes, recommended aloe vera gel daily mixed with fruit juice – took about 4 months, but she gradually became pain free and you wouldn't even know that she was the way she was.  I do believe she still drinks the gel on a daily basis, but can't be sure.  This woman recommended the naturopathic doc to us, and my hubby had GREAT results with the extreme swelling in his hands, through dietary changes and supplements, etc.  Good Luck:D

     

    L (hubby SD) – AP 14  months 

    #309283
    AK Girl
    Participant

    After 6 months with a doctor, I started crying :crying:for the first time out of frustration. She actually got angry and told me if I didn't get it together and walked into an office like that other doctors wouldn?t treat me. She practically threw a depression test at me and said take this and walked out of her office. I was shocked then really ticked. :angry:I haven?t returned nor do I plan to. I got my 2 cents in :Pwhen I returned from Virginia Mason in Seattle and she wanted me to return and I let her receptionist know the entire why's I wouldn't be returning.

    This same doctor took me down by 10 MG?s of Predasone a week for 2 weeks total of 20 MG?s and then when the flares were so intense and I wanted my pain meds refilled she wouldn?t do it, :headbang:I landed in the emergency room again, no insurance. The Emergency doctor immediately gave me a triple dose of my pain meds and said Predasone should never be decreased by more than 5 MG?s a week at the max.

    We are still the paying clients do they forget that? They put their panty hose or pants on the same way we do in the morning. They are just people well educated but not gods.

    Hang in There, Gail

    #309284
    Michele
    Participant

    My step in to “pain management” with Lyrica was the most frightening experience I have had yet with this disease. (RA / Lyme / ?)

    It was supposed to wear off in 5-7 hours and I am still sedated 12 hours later. My anger is huge. I didn't know it would put me into sedation. I couldn't even get up to go to the bathroom. My eyelids are still droopy. I took the medicine before I went to bed as suggested and when the medicine metabolized the effect woke me up like someone was reached inside me and grabbing my brain, face, and heart and started squeezing and pulling them.
    And it felt like I was floating around and not able to control my body.

    I would like to make this doctor take her own prescription so she sees what it does. That should be a new requirement for doctors.

    If I knew how to get those anger and head banging emoticons over here they would be there.

    Where to go? What to do? Who to trust?

    We don't have naturalpathic doctors covered on our insurance plan. They are out of network. So the expenses would be putting us far into debt. I certainly wish I had some available to me.

    This certainly isn't an upbeat post. But if anyone else has a heads up that Lyrica is NOT a pain reliever but a powerful sedative, that would maybe help someone avoid this journey. If you need sedation with your pain relief, Lyrica is it.

    (Oh, irritablility is one of the side effects. Gee, I wonder why? Anyone who goes through that experience is going to be wisherwashered.)

    Michele

    #309285
    superperroRA
    Participant

    Michele, have you had an anti-CCP blood test for RA? If that one shows positive, then the probability of false alarm for RA is small (like 5%)

    #309286
    linda
    Participant

    Hi,

    I know there have been several negative posts about Lyrica, but I have been taking it as needed for 3 yrs for fibro and it has worked wonderfully for me, with no side effects. It was one of the pain meds rx'd for me when I was weaning off of vicodin. It is non-addictive, not a narcotic or anti-depressant. That is why it is becoming a popular med for pain, no addiction or dependence associated with it, and none of the side effects associated with anti-depressants. It was originally made for people with neuropathy. I think it's worth a try, what have you got to lose?. Ask your doc for a sample pack, then you won't spend the money on a whole rx. It won't stay in your system long enough to do damage, and everyone has different reactions to pain meds. As a pain med, it is one of the safest.

    I also encourage you to try acupuncture, water therapy, or some other form of alternative pain management in addition to Lyrica. Acupuncture has the same effect as narcotics, it releases endorphins, but obviously it is not addictive. Someone mentioned a muscle relaxer, that might help, especially at night with sleep, but they also cause drowsiness most of the time.  They knock me flat, so I don't use them, but again, that's just MY reaction, it doesn't mean it will be yours. Good luck with whatever you decide,

    linda

    #309287
    Jennhere
    Participant

    Michelle and AK- I've seen your docs.  :angry:  <-- says it all. These people are clueless.  Giving over our health”care” to them is akin to Russian roulette.  I know, I know… be politically correct and don't bash the entire profession cuz there are some out there who are just God's gift to the sick.  Whatever.  Unless you've been seen by one of these heartless demons, and been in the kind of pain that makes you wish you were dead… Michelle, I'm trying never to take one of their chemical concoctions again.  I hope to continue along on the mino path + healthy food and exercise.  I'm so over the medical fields inertia here in this country. :headbang: Clearly, it's every man, woman and child for themselves in our system of health…”care”.

    #309288
    Michele
    Participant

    I am SO glad this works for some people. I certainly am learning I react to medicines very differently than other people. Linda, did you go through a period of titration with Lyrica of having to be sedated and “out of body” experiences before the medicine took effect? Or did it just work for you? Should I be patient with it and ask for a small dose? The non-addictive part of it is highly attractive. But let me tell you, I've never had an experience quite like this with any medicine. It makes me even more tentative to seek help and just stick with vicodin. At least it cuts 25% of the pain.

    I've been down the acupuncture road and while I love the person doing it, it was not effective for me. 🙁

    What's also concerning is that I left a message at this pain management clinic 5 hours ago and have not received a return call. I tried not to be too grumpy, but I'm sure my frustration was apparent.

    So when you have RA, I know there is joint pain…is there also muscle pain everywhere?

    My first CCP was a 9 (but I'm not sure the range of the lab…I thought it was 0-5, but your question makes me want to verify this with my doctor.)
    The second CCP in a different lab was a 6 with negative being less than 20 U.

    Thanks for the feedback on this one.
    Michele

    #309289
    linda
    Participant

    Hi Michele,

    I had no adjustment period to the Lyrica, but I did start out at the lowest dose. It never made me feel drowsy, irritable or foggy, in fact, it did just the opposite. I felt better emotionally and physically, and had more energy. this is common with Lyrica, despite the fact that it is not an anti-depressant; it's not a euphoric feeling like with narcotics, nor is it an emotionally dulling feeling like with anti-depressants. You just feel, well, better. I think it's because the pain keeps us down, when it's gone, I know I'm happier!  Another trick my pain specialist used was Lidoderm patches, you can wear them for 12 hours, they really numb the area, and again little or no side effects.

    I know there are docs out there that are clueless, but the pain specialist I went to literally gave me back my life. He is definitely a keeper.  He is a D.O., which for some reason seems to make a difference when looking for pain management. Like all fields, there are good docs and bad docs. I had to fire my AP doc because of negligent care, he was the most arrogant doc I have ever seen, including my rheumy that let me gain 70 lbs and become dependent on vicodin. It was the pain specialist who finally helped me. I forgot to look where you live, this guy is in San Antonio, TX.

    I'm not sure you should judge your doc on his statement to you about obsessing about your illness. They see a lot of patients whose illness completely defines who they are, to the point that when they start feeling better they become depressed because they have lost part of their identity. It happens more often than we would like to think, to the best of people. I hope he meant that he would like to help you  regain parts of your life that you have had to put on hold due to the pain. I'd give him and Lyrica a chance; I think it was John McDonald or Joe M who said they give their doc 2 chances. I believe finding a good pain specialist is as important to AI dx sufferers as finding a good AP doc, so don't give up if he doesn't work out. I'm encouraged by the fact that he gave you a diagnosis of fibro, if he's open-minded enough to accept that as a real disease he's probably open-minded about other therapies as well.

    I hope this helps, linda  🙂

    #309290
    AK Girl
    Participant

    Michele,

    I have muscle pain too. I just got back from my Dr and he gave me samples of Lyrica and took my first one an hour ago. This should be interesting. Gail

     

     

    #309291
    linda
    Participant

    Hi again,

    I forgot to addres the fibro pain. There are trigger points that are usually affected; the sides of the neck, inside the shoulder blades, the muscle just below the elbow on the top part of the arm, the hips, the inside and just below the knees, there are more, check the internet for a chart. You may not even be aware of them until your doc starts pushing on them to see your reaction. They feel like a bad bruise, altho there is no bruise. Also, some have burning feelings in their muscles. Some mornings I wake up and feel like someone beat me up while I was sleeping.  There are several other symptoms of fibro, you may have some of them. These include fatigue, insomnia, fibro fog (lack of concentration and memory problems), IBS, headaches, depression and restless leg syndrome, to name a few. Often anti-depressants are prescribed at bedtime to help with sleep. Many people feel like they have the flu, but it just doesn't go away.

    There are no tests at this time for fibro, but they have found something called substance P (I think), as well as other abnormalities, in the spinal fluid of people with it. I have had 2 rheumies tell me that everyone that has a painful AI dx has fibro to some extent. I don't know how I feel about that, but studies have shown that fibro often develops after some sort of trauma or injury to the body, this could be an illness, injury, or surgical procedure.  I can tell you this, the Lyrica does not help with joint pain for me, but it does wonders for the burning in my neck and shoulders, and the bruised feeling at the trigger points. 

    linda

    #309292
    Joe M
    Participant

    Hi Linda,

    It wasn't me who said to give a doc two chances before finding someone new, but I am curious about one thing.  How does a doctor let you gain 70 lbs?  Isn't gaining weight kind of up to the individual and what they eat?

    #309293
    linda
    Participant

    Hi Joe,

    I had not weighed more than 125 my entire adult life, (5'4'').  I was 41, on 15mg prenisone and the max dose of vicodin at the time I started gaining wieght, about 10 lbs every 1.5 to 2 months. My eating habits had not changed. I tried to tell him this was not normal for me, but he was not concerned. I was pretty much bedridden and didn't have the energy to pursue it until I wasn't getting any relief from the vicodin. The pain specialist I began seeing told me to see an endocrinologist, who discovered with a simple glucose test that I was borderline diabetic, probably from the prednisone. She put me on a diabetic diet, at the same time the pain management kicked in and I was able to wean off the vicodin completely and get the prednisone down to 5mg every other day, as well as exercise a little. I lost 40 lbs in 4 months  😀 then went back to my rheumy to get refills. He asked me how much vicodin I needed and I said “NONE!”. He was surprised, but happy with the results of the pain therapy. However, this doctor, who I had been seeing for 4 yrs, did not even notice the 40 lb weight loss.  I asked him to look at my weight from my last visit 4 months ago, then he looked at me like, “Oh yeah, I remember you.” His response was, “Good work, see me in 3 months.” 3 months later I had lost the rest of the weight, he didn't notice and I didn't bring it up.  Ask me how much I hate prednisone!!!  :X

    This was an office with 7 rheumies who saw hundreds of patients every week, their waiting room reminded me of a cattle call. If I took up more than 5 min of his time, I felt like I was imposing. Personally, I think he was a nice man, but had too many patients to manage. Sometimes, he seemed burnt out, I can't imagine how one wouldn't be; seeing a hundred or so chronically ill patients/week who aren't improving has got to be depressing.

    Thanks for asking about the weight gain. I've finally worked out the insurance and financial aid kinks for the remicade, I start next week. How is Michelle doing?

    linda

    #309294
    Joe M
    Participant

    Michelle is still doing great, thanks for asking.  Symptom free.

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