From Our Readers – Comments & Suggestions 12-02-09

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Infection a Cause of FM?

Re: the article “Infection as One Possible Cause of Fibromyalgia,” by Dr. Pellegrino.

I totally agree with this! When I take antibiotics – Doxycycline, etc.- all my symptoms and pain disappear including my IC [interstitial cystitis/painful bladder]. I feel 100% better. In fact I feel myself again. Everything works as it used to. However the antibiotics stop working after one or two months and they have to be changed otherwise I am back down on the ground again. I have tried gabapentin [Neurontin®] and Lyrica® [pregabalin], and am now trying duloxetine [Cymbalta®], but none of them works as well as being on antibiotics. In fact most of the time all the other tablets do is either make me more sleepy or make me so numb all over my body that it causes other problems. I have always said that Fibromyalgia and ME are caused by a number of unknown viruses which have attacked the body. It’s just finding out what they are. – M

You might as well just say a cold or hick-up causes FMS! I realize to find a cure one needs to know how it starts but I really wish we could skip the disclosure and get to the resolution and “cure.” – K

FM triggered by bacterial infection? Dr. Jay A. Goldstein, who, unfortunately, retired [in 2003], sometimes used the antibiotic Biaxin (XL) for the treatment of FM and/or ME/CFIDS. [Note: Biaxin is used to treat bacterial infections affecting the skin & respiratory system, and with other meds to treat H Pylori-caused stomach ulcers.] In rudimentary terms, he felt that the composition of Biaxin, in particular, fought off many of the symptoms of ME and even FM. Before seeing him I noticed that every time I went on Biaxin for upper respiratory infections, I’d feel a drastic improvement with my ubiquitous pain. I also felt less “weak.” I mentioned this phenomenon to him, which led to his theory. I still think that FM and ME/CFIDS are a cocktail of issues: toxin(s), viral and even bacterial… To better days – L

Infection? Possibly. Trauma is more likely. Trauma of prolonged stress or physical injury. I was raised in a home where I was fearful all the time of my alcoholic father. The stress as a child was unbelievable. I was a tired, sick little girl with circles under my eyes all the time. I believe my fibro started when I was very young. The shock and stress to my body due to emotional fear is what I believe triggered my fibro, complete with fibro fog and pain. Surgeries and illness as an adult didn’t help… I believe it is a major, prolonged shock that contributes to getting fibro. – T


Think Lipitor® Caused Memory Problems

Just want to alert others that taking Lipitor [a statin drug] for cholesterol can cause brain fog and memory problems. It did with me, plus I had problems with balance and numbness; I was dropping things. My memory improved again after I stopped taking the Lipitor, thank goodness. My doctor prescribed some fish oil and other supplements, and we’ll try that to see what happens with the cholesterol. – L

Note: It is very important to discuss all symptoms that concern you with your physician, and especially where prescription drugs are concerned, to make no change except with his/her consideration & approval. See for example “Side Effects of Lipitor”


Had Bad Side Effects with Savella
® – Unfortunately

My experience with Savella has not been good at all. My doctor put me on Savella since I am in a major flare up and was looking for pain relief. It did help my pain, but the trade-offs were not worth it for me, personally. (I do know some are getting GREAT results with this new medication, so it is worth a try. Please do not be discouraged by my results. I’m glad I tried it because you just never know. If I didn’t try it, then I’d be thinking “what if?”)

I’ll highlight my problems:

• It was affecting my vision… I’d try to read and my vision was very messed up. It is like words JUMP out at me. Then some words just disappear no matter how many times I read and re-read. We tried lowering the dosage, but I still was suffering from additional side effects. These side effects were interfering with my ability to do the things I normally would on a daily basis.

• Added fatigue was another issue.

• “Utter confusion”, “not able to focus or concentrate”, “difficulty understanding simple things”, worse than any Fibro-Fog I have experienced. I had to carry a list around with me, otherwise I didn’t know what I wanted to get done each day. Literally walking around in circles, I was so confused.

I weaned myself off of it because my doctor agreed we gave it a good try and the side effects created more problems in the end. – E


Savella Has Helped Me a Lot

…It is the first real “working” Rx that has helped clear the brain fog and helped me feel like actually getting out of bed and “wanting to have a life.” The pain is still there, and I find myself overdoing and paying for it later, but to anyone out there with fibro – PLEASE give it a try. At least talk with your Dr. about it!

The only side effect I’m still having a slight problem with is increased heart rate. And that can get a little scary. But my PCP thinks my body will adjust with a little time. But I finally feel like there is hope for all of us with this dreaded disease.

It has helped me get back into living my life, not as before I was diagnosed, but I’m not lying in bed 24/7! I’m able to enjoy being with my husband, family and friends for the first time in longer than I care to remember. – S


Interstitial Cystitis Mistaken for Endometriosis

Re: the abstract, “Early identification of Interstitial Cystitis may avoid unnecessary hysterectomy”

While they were sure I had endometriosis before my hysterectomy, it turned out I didn’t even have a cell of endometriosis. – N


Recommending Info Site for Interstitial Cystitis

I have interstitial cystitis [painful bladder syndrome] and don’t take meds because of their side effects. The main thing I do that helps tremendously is avoiding foods that cause the flare ups. It may help to keep a diary to help determine the foods that are the worst offenders for you. (When you have pain, what did you eat prior to that?) I know that’s not fun, but it will help in the long run.

A great website for additional info on I/C is The website also has a list of foods they recommend avoiding. The list is long, but most people do not have to avoid all of the foods. I don’t…

There are many other suggestions also on the website besides what foods to eat and not to – I just found that the foods were mainly what caused my flare ups, and when I avoid the foods, it calms down. The same is true with stress – it can also aggravate the condition, but not always. – E


When I’m Asked “What do YOU do?”

The first time I was asked “What do YOU do?” it took me by surprise. I was at some friends’ party, and I had never met this couple my husband and I were talking to. I stammered a bit, and finally said that I was disabled and unable to work anymore. The guy said – get this – “That must be nice!”

Now, folks, I am usually a very nice person, but this really set me off! I said, “NO, it isn’t nice. I LOVED my job, and would give anything to be able to return to it.” I meant it. I knew from the time I was 5 years old what I wanted to do, and it’s been a big part of my life, so I told him this too. I wasn’t rude about it; I just explained to him in a matter-of-fact way. But it obviously made the couple very uncomfortable, and they scooted away as soon as they could. I didn’t care. I wanted to let them know that disability isn’t a holiday!

Now when somebody asks me, I tell them I’m a researcher or an insurance wrangler, and then change the subject. – K


Quick Way to Find Anyone’s Past Posts on the Message Boards

Q: Sometimes (especially on the FM board), I will post something, and it will take forever for me to find the post if I haven’t been here for a few days. Am I missing something? – K

A: Click on the person’s username on any of their posts (or on your own name if you want to see any of your old posts). That takes you to a special page for that person. There, you can click on “Posts” and you’ll find a full list of links to past posts with titles & dates. (Starting with the most recent.)


Why Do Some People Avoid Flu?

Re: “Flu – What Is It That Stops Many People from Getting It?” by Dr. Sarah Myhill.

Excellent article from Dr. Myhill. I think she hit all the points that are extremely important and I found this article very helpful and informative. – R


“Dependent,” Not “Addicted”

I have fibro and osteoarthritis in all my joints, along with neuropathy. If I didn’t have the Vicodin I couldn’t make it. As it is, it only makes the pain bearable. People who do not have our pain just do not understand, and some simply just do not care.

I am not a drug addict. I take my meds only as prescribed. I know I am dependent on them, yes. I depend on them to help me make it through another day.

And yet even with the drugs, there are days that I stay in bed most of the day. And every day I have to make myself get out of bed to just face another day of pain…. S


Tips for Traveling with Fibromyalgia

I found this article, “Traveling With Fibromyalgia” very informative. Here’s another – “Traveling with a Disability or Chronic Illness” [by Karen Lee Richards, a co-founder of the NFA, who is now Health Central’s Patient Expert on Chronic Pain]. – G


What Works for My Sleep Apnea

I have sleep apnea, and I use a CPAP machine. It has been a lifesaver for me. I tried different masks, and I settled on the nasal pillow type, together with a chin strap to hold my mouth shut when I’m sleeping. With this setup, I can sleep on my sides as well as my back, and I don’t need a messy humidifier. The other masks would come off or leak if I turned on my side, and the ones that allow breathing through the mouth really dried me out, without a humidifier, and using a humidifier is more of a hassle. You have to fill it, it takes up space on your nightstand, it can spill, and it promotes growth of mold. The chin strap and the nasal pillow setup is far better, in my opinion. I actually find the machine kind of soothing, and I sleep like a rock. – R


Low Dose Naltrexone Helping Pain

LDN sure does “something,” as the rheumatic pain I had in my arms seems to be gone. I’m still on a very low dose, 1mg now, and realize it’s helping a lot. It’s not going to reverse everything, nothing will, but I have less pain/aches and do feel more energy. Dosing is critical and each person has to find their dose. I couldn’t do this without the LDN Yahoo groups. And hearing the success stories, gives me more hope. – J


I’m Making My Own Kefir

If you’ve thought about making your own kefir milk, here is a YouTube that shows how to do it. It’s easy to order the starter grains online. I’m lactose intolerant, but kefir helps lactose digestion so I get my milk. Also they say the ‘beneficial yeasts’ in kefir help prevent overgrowth of ‘bad’ yeast (Candida albicans). I make my kefir into smoothies with fruit because it’s too sour on its own, to my taste. – H


“Alternative” Therapies – a Misnomer

I’ve struggled with this terminology for a long time, for maybe 20 years since I started with “alternative” healing. To me this is the only way to heal. To put into our bodies what our bodies need and what our bodies are losing as we age. – J

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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