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Ondrus

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Thu, Oct 3 5:17pm · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain

I know that self-diagnosis is a dangerous thing, but I also know that those of us who suffer with unknown pain keep searching for the answer. Recently I read quite a lot about CSF Leakage, and I truly believe that is what is going on for me. Does anyone have first hand experience with cerebral spinal fluid leakage? I would love to hear from you about what symptoms brought you to the diagnosis. The more I read about it the more I find I have almost all the symptoms. I have an appointment with a neurologist on the 21st. I hope I can deal with the non-stop headache till then. I also hope he doesn't laugh at me for trying to be my own doctor. Please let me know what you know about this problem. Thanks

Mon, Sep 30 6:50pm · Cymbalta in Chronic Pain

I have just started Cymbalta as of last week. My doctor had me try it last May, but I became very sick with severe intestinal distress and weight loss. We were not really sure that it was the Cymbalta because I developed a UTI just after starting it. Then there were several anti-biotics which may have also caused the problem.

I should tell you that I have a long laundry list of problems: GERD, constant migraines, fibromyalgia, costochondritis, Raynaud’s, Sjogrren’s, high CK level, leg cramps, neuropathy in my feet, osteoporosis-arthritis in my neck, back, wrists, and hands. (Other things as well, but I won’t bore you!). The only pain killer I can take is Tylenol. Recently I came to realize that as fall/winter approaches, I always become a bit depressed, especially since cold weather causes me to tighten my muscles. Not so great for fibro. So my doctor, who is a very good listener has suggested Cymbalta along with the Lyrica I already take.
I am only taking 20mg every other day to start. So far, there has been some intestinal upset, but not too bad. If this works out for 2 weeks, I am supposed to try 20mg everyday. Then we’ll see after that.

Those of you taking Lyrica and Cymbalta have given me hope that there may be some days ahead without pain because of your positive comments. I have read that Cymbalta doesn’t usually have an effect for one to four weeks. I will be marking off the days on the calendar. Thank you for writing about your experience. I appreciate hearing your stories.

Tue, Sep 3 7:05pm · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain

Hello. I am a 71 year old woman who has dealt with fibromyalgia for most of my adult life. Fortunately, I have a physician who acknowledges and validates the pain. He has worked with me through the last 10 years to find the right level of medications without having me take more than I should. He has guided me toward appropriate exercise, yoga, massage, cognitive changes, and relaxation. In October, he wants me to take a class about dealing with chronic pain ( which the Mayo system is teaching).

Fibro is not my only challenge. I have had a headache since September of 2014. Botox has helped a little, but it never totally goes away. I have Sjogren’s and Raynaud’s syndromes and take Plaquenil for a high CL level. Last fall I began to lose my sense of taste. Now my tongue stings around the edges. I have GERD. My balance has gradually deteriorated. Neuropathy in my feet has certainly not helped that problem.

In spite of it all, I feel pretty lucky because I’m maintaining some quality of life. Lots of days are not so good, but then some good ones come along, and they really give me hope.

Thu, Jul 18 10:37am · Fibromyalgia in Autoimmune Diseases

About 3 or 4 years ago when reading a fibromyalgia journal, I saw that there was research into finding a blood test for fibromyalgia at the University of Illinois (Champaign). It said that the test would be very expensive. I have not found any more on this topic. Did anyone else hear about this?

Wed, Jun 12 8:04am · Cymbalta in Chronic Pain

A year ago in April, my PCP tried me on Cymbalta for my fibromyalgia. After 3 days I had diarrhea so badly that I ended up in the ER. It was complicated by having a UTI. Within a few days I lost 8 pounds which for me was not good because I am very thin. After getting well (3 to 4 weeks of being pretty sick) we tried the Cymbalta again. Within a day, I was back to being sick. We put Cymbalta on my growing list of meds I can’t take. Lyrica has been somewhat helpful but I’m not ready to do a commercial for it. My best medicine has been varied but regular exercise.

My fibromyalgia acts differently from that of most fibromyalgia patients I know. It comes and goes in huge waves. I will have a wave of bad days lasting as long 3 or more weeks. Then I will have a reprieve for a while. Right now I am extremely grateful for a “downtime “ of nearly 6 weeks with pain only reaching up to about 3 on a 1 to 10 scale. I’m waiting for this unbelievably good period to end without warning. That is how it usually goes for me. Does anyone else experience high and low waves like this? What do you think causes the come and go?

Sun, Jun 2 2:15pm · Fibromyalgia in Autoimmune Diseases

I am 71. I have had fibromyalgia since the 80s. I also have Raynaud’s, Sjogren’s, and Sicca Syndromes as well as unnamed auto immune diseases. When the fibromyalgia is bad, nothing seems to help except perhaps a warm bath. Due to GERD issues I can’t take most pain meds.

For the last 2 and a half years I have been going to yoga, tai ch, Strong Bodies class, walking, zumba gold, and trying to play pickle ball when I feel up to it. The more physical activities I do, the better I feel. I had to quit tai chi after a while because my balance is very poor and I could not do it. The yoga in particular has been good medicine.

My fibromyalgia comes in waves. Several weeks of feeling almost “normal “, and then the chest, shoulders, neck, and back start to ache. (Headaches as well) The pain usually peaks after 2 to 4 weeks and then suddenly subsided just when I think I’ll never feel well again. It’s a cycle I’ve begun to recognize . I’ve also learned that staying positive, staying busy, and doing things for others really help. Otherwise fibromyalgia can be too depressing.

Tue, May 28 7:50am · Botox for Migranes in Chronic Pain

I am a 71 year old active female. I had a severe headache since the fall of 2013 and tried everything for relief. Most pain killers were out of the question due to GERD issues. Oxygen therapy worked for a while, but it became less and less effective. Last February I had a Botox treatment for migraines. My head felt better, but my face changed. My left eyebrow arched severely and looked very strange. It was so obvious that people asked what happened. I decided Botox was not for me. I wrote online to the doctor telling him about the result. He said that he could place the needles in different positions so that it would not be a problem again. May 2nd I decided to try it again. Unbelievably, I have not had a headache worse than level 1 (out of 10) since then. I feel like I got my life back again!

Wed, May 8 7:51am · Problem with Tongue in Autoimmune Diseases

Thanks for your input. Since I wrote about this minor problem, I have heard that loss of taste is relatively common in older people. I am 71, so I guess it is reassuring to know this is probably not a sign of anything too worrisome. Nevertheless, it is a bit disappointing to not enjoy the taste of a good meal. The ENT said to not brush my tongue during teeth brushing and to avoid mouth washes. He said to use saltwater instead. He said it is probably a result of the Sjogren ‘s syndrome. So far, no change. Is this reversible, or do I just need to accept it?