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Chat Transcript: Eunice Beck, RN, PWC

  [ 1347 votes ]   [ Discuss This Article ]
www.ProHealth.com • August 13, 2001


Our guest for today's chat is a member of the Immunesupport.com family. Euncie Beck is ImmuneSupport's Coping Corner advice columnist. Eunice is an RN with over 30 years experience, most recently in a Pain Management Clinic. She is also a PWC, about 10 years since diagnosis, and has also been diagnosed with Fibromyalgia for about a year. She is currently unable to continue working, and is fighting in the long term disability wars that many of us can relate to.

Question directed to Eunice Beck:

SSassy8000: I was wondering how you deal with your CFS, and fibro? I am also dealing with being newly diagnosed and am confused with all the new stuff that I don't know about. How do you cope with fibro and CFS with your doctors, especially with the element of pain and muscle spasms?

Eunice_Beck: Sassy, I'm lucky to have had good doctors, but self-education is very important.

SSassy8000: Ok, I do agree that self-education is important, but what do you do when your rheumy doctors DON'T seem to want to answer your questions and concerns?

Eunice_Beck: Sassy, it is sometimes difficult to get doctors to listen. Sometimes it takes some Doctor shopping to find one that will work with you. Shopping can be a negative if you are asking for pain meds. Medical people tend to see that as drug seeking.

SSassy8000: I was dx (diagnosed) with this less than two months ago, I was not seeking meds, I was seeking affirmation and a listening ear, and I got neither. She "didn't have time" per her statement.

Eunice_Beck: Sassy, it may take you time to find a doctor who is helpful. Perhaps a counselor would be helpful too.

SSassy8000: Then if the doctors are treating like this is real, then why aren't the gov't agencies doing that as well?

Eunice_Beck: Sassy, some of the gov't agencies are trying to do so, but government always moves slowly.

Question directed to Eunice Beck:

ginny: Hi Ms Beck, I've been researching FM/CFS since 1997. That is when my FM was stirred by Hep-b.

Eunice_Beck: ginny, sometimes there is a trigger. Mine seems to be stress.

ginny: I agree, now mine is stress and I have developed seizures as of 9 months ago.

Eunice_Beck: Ginny, feel free to take info to your doctor, or ask him questions about things you have read. I think it is most important to teach yourself in the first year after diagnosis.

ginny: EB, I do as of about 2 months ago.

SSassy8000: EB, I am still trying to learn more about this.

Eunice_Beck: Sassy, immunesupport is a great resource, but there is a lot of other info on the web as well.

Question directed to Eunice Beck:

Englishlady: Do you think that doctors still have a negative view of FM/CFS or do you think that their attitude is changing?

Eunice_Beck: Englishlady, I do think attitudes are changing, as the government agencies are starting to treat this as real.

Question directed to Eunice Beck:

dee2: Eunice what does PCW stand for?

Eunice_Beck: Dee, PWC stands for person with CFIDS. I think we should also use PWFM.

dee2: Yes I think so too. FM is quite similar to CFS in the fatigue area.

James: Dee2, "PWC" means "Person With Chronic fatigue."

Eunice_Beck: Dee, many people think that it is probably the same disease, with different symptoms for different people.

Question directed to Eunice Beck:

ginny: Is there a med. test to tell the difference between FM and CFS?

Eunice_Beck: Ginny, there are some specific diagnostic criteria for FM with the use of tender points, but nothing yet for CFIDS.

Question directed to Eunice Beck:

dee2: Eunice what are some good questions I should ask my rheumy? I'm seeing him for the first time and I want to get the maximum help for my pain and fatigue.

Eunice_Beck: dee, that’s a great question, and one which might need a whole article. Probably first might be "Are you familiar and do you have patients with FM?"

Question directed to Eunice Beck:

Englishlady: Do you think FM is treated more seriously because it has diagnostic criteria available (the tender points)?

Eunice_Beck: Englishlady, I think perhaps this is true. Once we have a diagnostic marker for CFIDS it will have more legitimacy.

Question directed to Eunice Beck:

SSassy8000: If you had to make criteria, EB, what would they be?

Eunice_Beck: Sassy, the diagnosis criteria for FM is related to particular tender points at particular places on the body, usually where muscles join joints.

Question directed to Eunice Beck:

Guest34: What do you suggest for pain medications?

Eunice_Beck: Guest, it is always best to start with the lowest range of pain meds. Usually NSAIDs are used first.

Question directed to Eunice Beck:

Englishlady: What have been the most helpful treatments for you personally?

Eunice_Beck: EnglishLady, I have found CO-Q10 to be most helpful. I am also on low dose Prozac, and Doxepin to sleep.

Englishlady: Oh really, I had thought about CO-Q10 but wasn't sure. Is it mainly for energy or for something else? Do you take it every day?

Eunice_Beck: English lady, I also take Pro Energy from Immunesupport, plus other vitamins etc.

James: Many of the products discussed here today are available at www.immunesupport.com. Please refer to this website for further information about supplements and pricing.

Question directed to Eunice Beck:

dee2: Having so many symptoms that come with FM how can I get the rheumy to cover all the problems I have without sounding crazy?

Eunice_Beck: Dee, sometimes our symptoms do sound crazy, but if you doc. is acquainted with FM, they will seem less so.

dee2: Thank you Eunice I hope my new rheumy is familiar and has treated FM before. If not I will look for a new one.

Question directed to Eunice Beck:

ginny: EB, What do you know about CFS/seizures? I'm a Lab Tech. Last week was my last week to work due to seizures, and now I have lost my driving privileges.

Eunice_Beck: Ginny, as far as I know seizures are a separate issue from CFIDS/FM, but it certainly is possible to have both diagnoses.

Question directed to Eunice Beck:

Guest34: My name is Anne and I am on the west coast and I cannot tolerate NSAIDs. Using Talwin currently which is a big help.

Eunice_Beck: Guest 34, Talwin is also a good drug. If we can stay away from Narcotics it's better but sometimes they are necessary.

Question directed to Eunice Beck:

dee2: How long does it usually take for herbs and supplements to work for FM?

Eunice_Beck: Like most treatments, it is trial and error. My first doc started the CO-Q10, and it worked, but I have tried other products that don't.

Question directed to Eunice Beck:

Guest34: What is CO-Q10?

Eunice_Beck: CO-Q10 is an enzyme that works at the cellular level for energy production.

Question directed to Eunice Beck:

ginny: EB, Can you recommend something for the pain in my legs? Also my legs feel like hard rocks in the calves. The last two weeks my arms and forearms are feel the same.

Eunice_Beck: Ginny, sounds like you might be retaining fluids. It's also possible you are having muscle spasms. Are you taking a muscle relaxer?

ginny: I am now on Topamine, Effexor, & Synthroid. I know one side effect is retention. Lasix does very little. It really doesn't feel like retention. Yes I am.

Question directed to Eunice Beck:

Ann: I am new to this site. I have had FM 5 yrs. Workers Comp. Injuries so little help from them. All I know I have had to learn on my own.

Eunice_Beck: Ann, workers comp probably won't deal with a diagnosis like FM, only the injuries they can document.

Ann: W/C is paying for treatment, Doctor, Rxs, magnets, etc. But little help because of allergies.

Question directed to Eunice Beck:

dee2: What particular vitamins do you take Eunice?

Eunice_Beck: Dee, I take lots of Vitamin C (EsterC from ImmuneSupport) because, I tend to get lots of colds. etc. I also take Vitamin B and E.

Questions directed to Eunice Beck:

SSassy8000: So CO-Q10 is a natural vitamin to give a person more energy?

dee2: What are the amounts of vitamins, pro energy and CO-Q10 do you take?

Eunice_Beck: Sassy, and dee. Yes CO-Q10 gives more energy. I take 200mg/day. I also take double strength Proenergy 3 times a day.

Question directed to Eunice Beck:

dee2: What is Ester C? What amounts?

Eunice_Beck: Dee Ester C is a Vitamin C formula that Immunesupport has. I take 2/day.

Question directed to Eunice Beck:

ginny: It feels as if all muscle and ligaments are tangled.

Eunice_Beck: Ginny, physical therapy might be helpful. I've been going and it has helped my fatigue and pain.

Question directed to Eunice Beck:

SSassy8000: So it is OK to take supplements, vitamins, and the like with prescription meds? Then how do you know what will be beneficial, go to the pharmacist, doctor, or health store specialist?

Eunice_Beck: Sassy, with any meds, it is good to try one new thing at a time so you know if it helps. But you can take supplements with prescription meds.

Question directed to Eunice Beck:

dee2: Thank you Eunice. What about the vit. B & E? What type B vit.? like B-12 or others?

Eunice_Beck: I take just regular vit. E and a B complex. I also take vit. B12, sublingual-under the tongue.

Question directed to Eunice Beck:

dee2: What herbs don't mix with prescriptions drugs?

Eunice_Beck: Dee, that is a difficult question, and one better asked of your doctor.

dee2: I will ask the doc.

Eunice_Beck: Dee, or you might talk to an herbalist, they usually have some understanding of rx meds, and the supplements.

Question directed to Eunice Beck:

Guest34: How do you arrive at correct amounts of vitamins and are there any other enzymes you use and is it safe to take enzymes?

Eunice_Beck: Guest, I think that is where self-education is important.

Question directed to Eunice Beck:

ginny: Will I be like this the rest of my life? And yes I do get lost quite often.

Eunice_Beck: Ginny, we all hope that there will be progress in treatment, and we all have ups and downs.

dee2: I get lost to especially trying to find my car in the parking lot.

Eunice_Beck: Dee, I have learned to take special note of where my car is, and that I have my keys!

dee2: Thats a good idea. I try to take note to but a lot of times I forget anyway. To write it down I mean.

Question directed to Eunice Beck:

Ann: Do others have comprehension and reading problems?

Eunice_Beck: Ann, yes, I have some comprehension problems, especially if I have a headache.

dee2: Yes, I can never remember what I've read have to read it over and over all the time.

cheermom: I've always been like that; sometimes have to read things twice especially if I am not interested in the subject.

Eunice_Beck: Cheermom, sometimes I have to read it twice even if I am interested.

SSassy8000: Yes Ann, I do quite often, and I do get lost, and the same way I can't remember, and my comprehension STINKS!

Ann: Thank you. At least I am not alone.

Question directed to Eunice Beck:

dee2: I get throbbing, numbing kind of pain, especially in my feet. Very numbing like it's swelled up with pain.

Eunice_Beck: dee, I have similar type pain in my feet, with some loss of feeling. Neurontin helped me a lot.

Question directed to Eunice Beck:

Guest34: What is Neurontoin?

Eunice_Beck: Neurontin is an Rx medicine, sometimes used for nerve pain.

dee2: Does immunesupport sell Neurontin?

James: Neurontin is a prescription medication. ImmuneSupport.com cannot fill prescriptions.

Eunice_Beck: You'll have to talk to your doctor about Neurontin.

Guest34: What amount of Neurontin?

Eunice_Beck: I take a very large amount, but it is good to start slowly to see what works for you. It can cause significant drowsiness.

Question directed to chat room:

cheermom: Dee, have you tried Vioxx?

dee2: Never tried Vioxx what is it?

cheermom: It is an anti-inflammatory type drug.

Eunice_Beck: Dee, Vioxx is a new NSAID that is not supposed to bother the stomach.

Guest34: I took it and even though it's not supposed to, it bothered my stomach.

Eunice_Beck: Guest34, that happens unfortunately.

cheermom: But better than most; it is used in patients with arthritis. It gives me heartburn. I have to take Nexum.

Eunice_Beck: Cheer, many of us who take NSAIDS also have to take something for our stomachs.

cheermom: Yes, I know.

Question directed to Eunice Beck:

dee2: Does Vioxx help the pain lots?

Eunice_Beck: Dee, like most other drugs, it works for some, not for others.

cheermom: Celebrex helps too! Of course, you cannot take both at the same time.

Eunice_Beck: Cheer, Celebrex is a good drug too.

cheermom: Yes, I interchange them.

Ann: And if you have asthma you can’t take any of those prescriptions (like me).

Eunice_Beck: Ann, asthma does occasionally cause some problems, but I have had no problems with NSAIDS despite asthma.

Question directed to Eunice Beck:

Guest34: How can you discriminate between muscle and nerve pain?

Eunice_Beck: Guest34, nerve pain usually tends to be more tingling or sharp, rather than achy.

Question directed to Eunice Beck:

dee2: I have a lot of nerve and joint pain along with fatigue and headaches 24/7.

Eunice_Beck: Dee, the headaches, I finally had to go to an Rx for migraines although my headaches are much like yours.

cheermom: Me too, dee2. I have a lot of headaches.

dee2: The headaches have gotten a little bit better since I ordered the Cuddle Ewe quilt though.

Englishlady: Hey dee - how does the quilt help - I heard about it but don't know if it’s worth it?

dee2: Feels great English.

Englishlady: How long have you had the quilt dee?

dee2: Had the quilt for about three weeks now.

SSassy8000: I am not familiar with the quilt.

dee2: Sassy it's suppose to relax the muscles so that you have less pain when you sleep.
So far I'm feeling moderately better with the quilt and to me that’s more relief than I’ve gotten from docs.

Englishlady: And it already feels better - that's pretty fast. hmm, maybe I'll have to get one..

James: Cuddle Ewe quilts are specifically designed for body pain conditions like fibromyalgia. More information regarding Cuddle Ewe over-quilts can be found on www.ImmuneSupport.com

Cheermom: What does the quilt cost?

dee2: Mine cost $278 for the queen size quilt

James: The quilt is a physical sleep aid, which goes between the mattress of a bed and the fitted sheet. Many of the products discussed here today are available at www.immunesupport.com. Please refer to this website for further information about supplements and pricing.

dee2: I tell all my FM buddies about how great the quilt is. I got a special deal for the quilt as they were selling quilts with free shipping.

Question directed to chat room:

cheermom: Have you tried massage therapy, dee2?

dee2: No, but I’d like to cheer. I know it would help a lot.

cheermom: I have found that to be a wonderful treatment.

Eunice_Beck: Cheer, massage is really helpful, and if you are on Medicare, it will pay for it if done in your doctor’s office.

cheermom: Eunice, I am only 38 years old, I am not on Medicare.

Guest34: Medicare pays for message therapy if your Dr. prescribes it?

SSassy8000: REALLY? EB if it is done in the doctor’s office?

Eunice_Beck: My rheumy has massage therapists in his office, and it is paid for. I don’t know if it would be with just an Rx.

Question directed to Eunice Beck:

Ann: Do others have major IBS as the result of the meds (only)?

Eunice_Beck: Ann, although meds may contribute, the IBS can be a part of the disease.

SSassy8000: I had IBS before I was Dx with Fibro, and CFS.

Eunice_Beck: Sassy, I had IBS before too but it wasn't diagnosed.

Question directed to Eunice Beck:

dee2: What did the doc. say about your headaches did he help you EB?

Eunice_Beck: Dee, I tried something else for headaches first. My first doc gave me a diuretic called diamox, which relieves pressure in the brain

Question directed to Eunice Beck:

SSassy8000: Diamox-is that for migraine headaches EB?

Eunice_Beck: Sassy, I have also found some help for IBS, with an Rx drug called Lomotil.

SSassy8000: I have constant migraines rating 10 on the pain scale.

Eunice_Beck: Sassy, diaxox is more for the pressure/fog kind of headaches.

Ann: I have used a magnetic headband for headaches before with good results.

Cheermom: Also, Levbid is a good anit-diarrheal drug; it is sublingual.

Eunice_Beck: Sassy, are you able to take imitrex or zomig? They are very helpful for migraines.

SSassy8000: Yes, I am and I am going to see my family doctor when she gets back into town.

Question directed to Eunice Beck:

Guest48: What can we do for the weight gain Eunice?

Eunice_Beck: Guest 48, a difficult question. My exercise in physical therapy and watching what I eat is helpful.

Question directed to Eunice Beck:

dee2: To what degree is your FM controlled EB?

Eunice_Beck: Dee, I have had to leave work since the FM Dx. I am somewhat better.

dee2: That’s good EB a little better is a lot better.

Question directed to Eunice Beck:

Guest41: This week my physician gave me EFFEXOR to try, as I am in the mist of a three week flare-up, cant seem to get it under control. What do you think...I’ve got severe chemical sensitivities?

Eunice_Beck: Guest41, effexor is a good drug, but you may need other Rx as well.

James: Unfortunately, our chat with Eunice Beck is coming to an end. Her time is very valuable and we must bring this to a close.

SSassy8000: Thank you for coming EB-you gave me plenty of resources to ask my doctor.

Eunice_Beck: I think it is time for me to say goodbye, but you can email me with your questions or comments at Copingcorner@prohealthinc.com



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