From Our Readers – Comments & Suggestions 11/19/08

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Awaiting Milnacipran’s Approval

I took part in the Milnacipran clinical trial and am anxiously awaiting its FDA approval. I am currently taking Cymbalta, and it’s not working as well for me as the Milnacipran did. I wish they would hurry up. – Cindy


Save on Rx with Free Discount Card

I have no insurance and have been using this card for several years. I have saved a lot of money with it. Go to the site below, it has all of the information you will need including phone number if you have more questions.

Save on brand-name and generic Rx. 45,000 participating pharmacies. Nation-wide savings. One card covers entire household. – kjfms


Artificial Sweeteners and Migraines

I was eating a lot of food with artificial sweetener, but when I read about the side effects I stopped. My migraines have decreased a lot since I have stopped the artificial sweetener. I now use Stevia and it’s a good alternative. – Mimif

Note: For more information see “What is Wrong with Artificial Sweeteners?” by Dr. Scott Olson.


Effects of FM on Sexual Activity

Re: Abstract – “Assessing the effect of fibromyalgia on patients’ sexual activity.”

I’m glad this study was done. Now I can show my husband that I’m not lying to him about my low libido! He never believed me when I told him that the reason I don’t feel like having sex is because of my fibromyalgia! – loto


Herbal Help with Sleep

I also had a big problem with quality sleep and would not be functioning at all without herbal help. Some people respond favorably to melatonin, others (like me) do not. There are several herbal sleep preparations that you can try to see what works for you. Overall, I look for preparations with the USP certification (for quality control)…. L-Arginine and L-Ornithine are two amino acids that help the brain make the necessary neurotransmitters and hormones for quality sleep. They are usually taken in 2:1 amounts and usually come together in the same capsule. Start with one and see how you do. Then try two, etc., until you either reach 4 or you find you are sleeping well. If you get to 4, it’s probably not working for you.

GABA is another neurotransmitter that you can take directly. I used to take it with 5-HTP (serotonin precursor), and the combination worked great. Again, try one of each and see how you do. Work your way up to the maximum label dosage, if needed. I used to take 1 GABA and 3 of the 5-HTP. The one I am taking now is by far the best one for me at this stage. It is St John’s Wort (SJW, another herb that works with serotonin as an SSRI), and I take 450-750 mg per night and get really sound sleep without any side effects waking up. Sleep hygiene is ABSOLUTELY key. I go to bed every night at 11 PM and wake up every morning at 7 AM. If I had a really good night’s sleep, I will wake up before my alarm around 6:30 AM. Then I get up and start my day early, happy to have the extra 30 minutes. Good luck everyone! – Sandy


Prescribing Placebos Disgraceful

Re: “Prescribing “placebo treatments”: Results of national survey of US internists and rheumatologists”

This practice is unethical and should be illegal. It’s disgraceful that a physician would give a placebo to a Fibromyalgia patient when there is FDA approved medication available specifically for that illness. If the only treatment that a Dr. can come up with is a placebo, then they should refer the patient to another Dr. who actually knows how to effectively treat the illness. – outofstep


Cupping Helps My Muscle Pain

I was diagnosed with FM in 1991 and have had constant, horrible pain in my upper back muscles for over 30 years. Physical therapy would relax them, but as soon as the body work was over, my muscles would just knot up again. I have been treated with suction cups and the pain is GONE! Cupping is amazing… Please spread the word. – Cindy


What Worked for Me

I take Cymbalta and Lyrica for pain,

Ambien and time released melatonin for sleep.

I eat lots of fiber and avoid diet soda, milk, and ice cream for my IBS symptoms. (I do eat yogurt and some cheese.) I drink lots of water and substitute unsweet tea with stevia for soda.

I have joined a gym since I started taking Lyrica and that helps immensely with energy. I allow myself 2 cups of coffee in the morning but no more caffeine any later than that.

I have a wonderful chiropractor and massage therapist who does TMJ treatments. I also wear a night guard to prevent teeth grinding and clenching, which causes TMJ neck/back/arm pain etc. from compressed nerves.

For my allergies I use Allegra and Nasonex and when necessary I use a neti pot to cleanse.

I stretch at night. – Floridagirl


Xanax Danger

Xanax I hear makes you feel calm and helps you sleep. But it is not meant for long term use! And you have to be weaned off of it. My son was on it for years. Only thing that would help him sleep. But he had a massive seizure! He stopped the drug suddenly when he ran out. You can have a seizure 24 to 72 hours after stopping the med, so please get weaned off of it. Not worth it! – Gotdirt

Note: Xanax is a drug of the benzodiazepine class. For information on withdrawal, click here.

Things I Strive For

Here are a few things that I strive for – mainly to feel ‘normal’ and purposeful.

• Laughter is so important. When I’m not in severe pain, I try to keep my sense of humor and joke around as much as possible. It’s amazing what it can do for one’s mood.

• Another thing I try to do is do something for others. Generally it’s a supportive phone call or email. Just letting someone know you care about them can make a huge difference in YOUR life knowing the effect it has on theirs.

• Guilt has always been a big problem for me – so I’m always working on letting go of that. I listen to my body (or try to). If I don’t have to be at work, I lie down and make sure my body gets rest. I say no to people and don’t overextend myself.

• Little tips – I keep a toothbrush and toothpaste in my powder room which is on the main level (bedroom is upstairs). I also keep a notepad and pen on my coffee table by my laptop so I can write myself notes all day if I need to.

• Finally, it took years to develop the habit of choosing my attitude. It’s been VERY hard to hold onto that, but when I can, I try. Sometimes my pain is at an intolerable level so it’s almost impossible, but on other days, I try to remember the simplest of things that bring me joy and happiness and choose to be happy for that moment at least.

• Smile. When possible – at work, around my kids and my husband (again if not in severe pain) – smiling can change your world. I need to do more of it, that’s for sure. Look in the mirror sometime. That’s what made me decide. The look on my face normally looks terrible. I look miserable all the time. I don’t like it. That is one thing I have control over. – Janalynn

Note: This information has not been evaluated by the FDA. It is generic and anecdotal 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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4 thoughts on “From Our Readers – Comments & Suggestions 11/19/08”

  1. cpspa says:

    Thank you Florida girl and out of step for your info. I am going to use the rx card! I’m sure a lot of people will appreciate it that have no insurance.

  2. raetuttle says:

    Thank you, Janalynn, for your excellent comments. It has taken me a long time to realize and believe that I DO have control over my thoughts and attitudes and how I react to things. I have been dealing with fibro/CFS since 1991, and as one who chooses not to take a lot of medications, I’ve tried to find alternative ways of dealing with the pain, exhaustion, brain fog, etc., and it has not been easy. I work full-time and take care of my elderly mom so I have to function. Living one day at a time helps, as well as light exercise and reading/watching things that make me laugh. And I also try to do a lot of the things you mentioned in your article. God bless!

  3. oldwildcat says:

    I too took part in the clinical trial for Milnacipran. While it did have some positive effects, for me the side effects were much worse. My blood pressure went through the roof and I developed blisters on my face and hands. I had to be pulled at of the study due to the potential health risk. If you try it when it becomes available please be careful and make sure your physician monitors your blood pressure. Thankfully my blood pressure has returned to normal and the blisters have disappeared but I know that I can never take it again and it is disheartening when I would love to have some relief.

  4. AuntTammie says:

    I’d like to know more about cupping…like who does it, how exactly do they do it, does insurance cover it, how often do you have to have it done? Or is it something that you can buy and do yourself?

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