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Letters From Our Readers – Q&A Session 5-16-07

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Where Can I Purchase Device Mentioned in Abstract?

Q: Where can I purchase the following, mentioned in your article “Acupuncture-like Electrical Stimulation on Chronic Tension-type Headache: A Randomized, Double-blinded, Placebo-controlled Trial“? – G

A: The article abstract you mention does not indicate what “acupuncture-like” device was used in this trial – whether it was “electroacupuncture” or perhaps a “transcranial electro-stimulation” device. Various electrotherapy devices are available for purchase – with a physician's prescription. The publisher will allow you to view the full text of this article for a fee, but you might want to query the authors directly via the e-mail address provided in the abstract. (For background information on electrotherapy see the article “Cranial Electrotherapy Stimulation: A Non-Drug Neuromedical Treatment”).



Question About Lupus & Dealing With Pain

Q: I am 41-year-old native-American Indian. I was told I have Fibromyalgia. I have swollen muscles and I hurt so bad I cry… I have red spots and bruises appear on me for some unknown reason. It’s hard to get a doctor to treat people with Fibromyalgia. I have a pain doctor who helps me a lot. She thought at one point I had lupus so she sent me to a doctor who never took any blood work. She just looked at me and said, “You don’t have lupus.” without even putting her hands on me. Now I just deal with the pain as much as I can… I also have IBS, a tear in my right hip, sleep apnea (I sleep with a CPAP), I stay nauseated, and I have to get my bladder operated on. I thank God every day though. I am maintaining or trying to. I just need to learn how to deal with the pain and the crying at times. – Patty

A: The doctor you were referred to for possible lupus should have done blood work. It may be that he or she didn't see the classic butterfly rash on your face so assumed you don’t have lupus. However, not everyone with lupus has the rash, so it's important to look at other things, including blood work. The Lupus Foundation has a set of questions to help you determine if you should talk to your doctor about possible lupus.

If you haven’t seen a rheumatologist yet, that would be a good next step. Not only do they regularly treat FM, but they also treat lupus – and they are often the best diagnosticians. If the doctor who said you don’t have lupus was a rheumatologist, then you need to ask your doctor for a referral to a different one. You deserve to have a doctor who will do the appropriate testing and work with you to find the best treatment options for you.

Also, you mentioned that you are going to have bladder surgery. Please be sure to read "Guidance for Fibromyalgia Patients Who Are Having Elective Surgery" and give a copy to your surgeon. It has excellent suggestions that can make a big difference in the level of your post-surgical pain and your recovery time.



Why Have I Lost My Sense of Taste?

Q: I am a 57-year-old woman with Fibromyalgia for three years now. Three months ago I lost my taste buds totally. I have not been able to taste food and it is just awful. I have my sense of smell still but no taste. My mouth feels like a sewer everyday and I have to force myself to eat and when I do sometimes its just bitter or no taste at all. There are so many foods I cannot eat anymore. I am taking pulsatilla pills but nothing yet. I had an MRI that came out negative. I went to an ENT doctor and he has NO idea what has happened either. I have not had any sinus problems, colds or flu or trauma to my body. I just have Fibromyalgia, which some days is very bad with pain.

I have learned to live with fibro, but this loss of taste is very hard to live with and I have a very low quality of life now. Do you have any answers? I am just beside myself and hate it. – Marla

A: We’ve never heard of loss of taste being directly related to Fibromyalgia. However, there are a number of other illnesses and deficiencies (such as vitamin B12, zinc, folate) that can result in a loss of the sense of taste. WrongDiagnosis.com provides a list of links on possible causes of loss of taste (with & without loss of smell). Hopefully this list will help you and your doctor pinpoint what is causing your taste bud problem.



What Causes Cracks on the Tongue?

Q: I was wondering about cracks on the tongue. I take all kind of vitamins and minerals. I have Fibromyalgia, diabetes, and many other problems. I have asked the doctor and he says it is normal. Well, it isn’t. I get this several times a month. I split down the center of the tongue, than several deep cracks throughout the tongue. I also get lumps that go with it. What do you suppose it is? When this happens, I cannot eat or drink certain things. – A

A: Although most Western medicine doesn’t seem to regard cracks on the tongue as something to be concerned about, Chinese medicine considers the color and texture of the tongue to be a significant diagnostic indicator. What the cracks indicate is dependent upon the color of the tongue, the location of the cracks, and when the cracks occur. If you’re willing to try Chinese medicine, a licensed acupuncturist should be able to help you learn what might be causing your problem.

Note: This information has not been evaluated by the FDA. It is general information and 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 regimen without researching and discussing it in consultation with your professional healthcare team.

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One thought on “Letters From Our Readers – Q&A Session 5-16-07”

  1. PennyinOhio says:

    I am a medical writer who writes for the Interstitial Cystitis Association, and I am concerned about this patient’s comment on bladder surgery. If the reason is interstitial cystitis, I caution her that bladder surgery does not necessarily resolve the pain problem. That’s because pain in this disorder is thought to be centralized so it is no longer truly based in the bladder. There are many more treatment options offered by urologists and others who understand that these disorders–fibromyalgia, irritable bowel, interstitial cystitis, and lupus–can often occur together. In fact, if your letter writer is in Oklahoma, urologist John Forrest of Tulsa treats many native Americans with IC and might be a good resource for her. The Interstitial Cystitis Association can help with information and lists of IC physicians in your area. Go to http://www.ichelp.org or call 800.help.ica. Your physician should definitely do bloodwork, and I urge Patty to have this investigated thoroughly before she considers bladder surgery. Successful treatment of lupus or associated problems can often help the bladder symptoms.

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