Letters From Our Readers – Comments & Suggestions 06-25-08

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LyricaR warning – especially for bipolar patients

I wanted to tell fellow suffers that while Lyrica [the first prescription drug to receive FDA approval for Fibromyalgia] seems to be wonderful for relieving pain, if you are bipolar, as I am, you need to be very careful taking this medication. One of the rare side effects for the general public, but not so rare for those of us who are bipolar, is mania. You will find “mania” listed in the fine print of the list of side effects.

I started taking Lyrica 50mg three times per day as prescribed by my rheumatologist, and enjoyed some degree of relief from my fibromyalgia pain. My physician increased my dosage to 75 mg three times per day, and within a week I started to experience symptoms of hypomania [persistent elevated or irritable mood, with symptoms such as rapid speech, distractibility, or decreased need for sleep]. The symptoms became worse, and only began to resolve after the Lyrica was tapered to 0 and the blood levels of medication dropped. It was my psychiatrist who researched the side effects of Lyrica and found that mania can be caused by this drug. Once I stopped taking Lyrica I returned to my baseline without need of further intervention. – Elaine

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Sharing article on FM pain by Dr. Pellegrino

I sent your first article [“Fibromyalgia – Ultimately a Disease of Amplified Pain” http://www.immunesupport.com/library/showarticle.cfm?id=8892] to many friends who have the same or similar conditions and to those who would want to know more. I do hope this will be a lead to a significant cure.

I also printed out your article about depression.* I think I may be there and hope to see my doctor soon and discuss it with her. I am, however, allergic to all of the meds that can be prescribed for this condition. But maybe some analysis and counseling could help. I also have MCS [multiple chemical sensitivity], making it very hard to find any meds to help with pain, sleep or mood. Thanks again for your information. – Glenda

* Note: We’re not sure which depression article this refers to, but perhaps it is the recent Q&A with Dr. William Collinge, in which he responds to questions such as this one: “In counseling patients with depression, do you tend to suggest a combination of drugs and alternative therapies? Is there something you tend to try first?” Or it may be “A Systematic Review of Chronic Fatigue Syndrome: Don’t Assume It’s Depression.”

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Pain & suffering – different things?

Re: “The Mind-Heart Connection: What Is Stress and the ‘Stress Response’?”

This article reminded me of a concept by Dr. Zinn who taught meditation to cancer patients at his clinic. He wrote a book called Full Catastrophe Living, and in it I read about this: “Pain and Suffering are not the same thing – suffering is our reaction to pain.” It might seem to not mean anything, or to be just obvious, until you think about it a bit more.

Like this article, Zinn is saying that it is the way we REACT to pain that is important, it is the one part of the experience we might be able to have some control of. When we stub our toe, we might jump up and down and yowl loudly, or we could CHOOSE to remain calm and just notice the sensations coming through our body from that stubbed toe. If we do the second option, there will actually be LESS pain. Plus, as the article points out, there will be less bodily reaction, too – our heart will not go so fast, etc. Ultimately, we will SUFFER less if we do not react to pain, but just notice it and observe it. That does take some courage though. – SP

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Light dishes easier to handle

From the “Tips for Managing Daily Life” string on the ME/CFS & FM Message Board.

Early on in my illness, I got rid of my heavy pottery dishes and replaced them with Corelle. Corelle dishes are very lightweight and so much easier to lift in and out of the dishwasher. Also, they don’t break if they drop. I know this sounds like a small change but it has made a big difference. – Romalaw

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Found unbelievable pain doctor in Pittsburgh

From the very active “Please Post Your Good Doctors” string on the ME/CFS & FM Message Board, which includes requests and recommendations for specific towns/areas.

I have been going [to a new doctor] for 15 months…after numerous other doctors. He is the most caring doctor I have ever encountered. If you are in pain he will see you. He talks to any patient that calls in to talk to him. Immediately. He wants to be updated weekly, via phone, on your condition… If you don’t call he will send you a letter asking you to please call him and tell him how you are doing…. He asks your opinion on different meds before he prescribes them and also listens when you talk. He takes his time. Sounds unbelievable but it is absolutely true. – Believeme31

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Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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7 thoughts on “Letters From Our Readers – Comments & Suggestions 06-25-08”

  1. rickj44 says:

    I started taking lyrica two years ago and notice no difference, @ 75mgs. I then decided to try again, and worked my way up to 150mgs before i had to stop again after 1 1/2 months.
    For some reason this medication increase my pain and it was very noticeable when laying down to sleep.

    I tryed to get through it but had to stop, for lack of sleep> I was waking up at 3 am sometimes 4 am in so much pain i could not lay down any longer. Felt like my nerves where on thr outside of my skin and i am laying on them.
    My upper body got very senstive to pressure. Its that way anyways but with lyrica it was even more senstive.
    Not sure how a drug that is suppose to decrease pain increase it in my case.

    The same thing happens hen i take drugs for High cholesterol.

    Just thought i would share this information>

    Rick

    1. sandyc13 says:

      My doctor also prescribed Lyrica for muscle pain. He started me at 50mg. ,one at bedtime. This was with the intention of gradually increasing it after one week. He said to give it a month to see if it works for me.

      After about the first week, my pain level INCREASED dramatically. Stupidly I continued on it for almost a month(but did not increase the amount) . The pain was unbearable (level 10) and I had to wean myself off of it.

      Since I was at such a low dosagae, I don’t think the doctor believed my pain was coming from the Lyrica! But after 3 weeks being off it, I am back to my original pain level of 6-7.

      The doctor said many of his fibromyalgia patients take both Lyrica and Cymbalta.

      I am reluctant to try Cymbalta with my history of side effects from medications. Plus, none of the other antidepressents I have tried for fibromyalgia helped at all.

      That was my experience with Lyrica.

    2. cpspa says:

      I used to take Lyrica for FM as well. I gained 15 pounds the first few months and had almost daily headaches. It didn’t help me with nerve or muscle pain-didn’t seem to be doing much at all except putting a dent in my wallet. I quit taking Lyrica, but have stayed on Cymbalta and Tramadol. I am gradually losing some of the weight gain, and my headaches are not as frequent or severe. We, as patients, need to be aware of what’s going on with our bodies and don’t always take the pills our doctors prescribe if they are not doing anything or making symptoms worse. Listen to your bodies and do what’s right for you!

    3. hurtygirl2 says:

      Lyrica really helps to relieve some of my pain (75 mg three times a day), but it makes me very sleepy, so I can’t drive if I take it in the daytime. So, for that problem, I just don’t take it in the daytime – I take 2 at bedtime and it really helps me to get to sleep (in combination with several other medications I take regularly). If I take more than that, I get swelling in my feet and ankles.

      Another problem I’ve encountered with Lyrica is that it causes weight gain – at 3 a day, I rapidly gained about 20 pounds (within several months)… And now, having cut down to just 2 (150 mg total) at bedtime, I can’t get rid of the weight. I’m in so much pain that I can’t get out of bed in the mornings, much less even consider doing any kind of exercises. I try to have a healthy diet, but sometimes it’s impossible to get to the store if I’m in too much pain to drive.

      Anyway, I just wanted to put those observations out there. If anyone has had a similar problem or a solution (rather than quitting Lyrica altogether) I’d be appreciative of some advice (or consolation!).

      Thanks!

      1. LOSREIPD1 says:

        I took Lyrica several years ago when it was first released. I gained 30 lbs, my hands and feet were swollen and I wanted to sleep all the time. I have been off it for years. The other day my doctor put me on Neurotin and it almost killed me. I had out of body experiences. I was given this in place of Lyrica.

        I have decided to stay on my daily regime of methadone and hydrocodone. They are the only meds that relive the pain enough so I can function. Just wanted people to know what it might do to them. God Bless.

      2. lovecarebear says:

        I also have fibromyalgia & chronic Fatigue Syndrome.& osteritis,osteoporosis,Sleep anea,and day sleepness. The Doctor put me on Lyrica. I take it twice per day . Once in the morning & once in the evening.It has helped with the pain. but it really makes me swell all over. and gain about 20 pounds within one and a half months. I don’t no what to do. Because I don’t want to get fat. But I don’t want to hurt all the time either. I can’t never plan anything because I never no how I’m going to feel. I also try to help take care of my Dad & Mom. They are 81 & 77 years old. My Mom has Alztimers, she has had it for about 10 years. My Dad is in pretty good health. But he’s beginning to get wore down. Also I take care of my Husband. He has a bad heart. We have been married for 41 years. The Doctors don’t give us much hope for him. Then my brother had to have one kidny removerd because he had cancer. And he doesn’t have a wife to take care of him. So I try to help him also. I no I push myself to much. When I do, some of my family does’nt understand why I get down so bad. But they don’t understand Fibromyalgia. I try leaving lititure of it laying around thinking they might would want to read on it . But they never pick it up. Life is really heard sometimes. But I try to remember all the good. And thats what keeps me going. And that I no God is with me. My prays & huggs are with you. Try to be strong. And keep your chin up. Take care & God bless

  2. hurtygirl2 says:

    I have taken both and had some of the same problems you had (weight gain with Lyrica, as I mentioned before). With Cymbalta, I had severe swelling in my feet and ankles and sores in my mouth – needless to say, I am not taking Cymbalta any longer.

    I have MCS, so there are so many medications I have been prescribed that gave me horrible side effects (in addition to not helping my pain). There was one medication that helped me a lot a few years ago – Bextra (similar to Vioxx – and was also taken off the market).

    It seems like there is nothing that doesn’t have some problem associated with it! But I agree that we should listen to our bodies and do what’s right for you – I don’t think there are many doctors out there who know us as well as we know ourselves…

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