Fibromyalgia pain: Let's connect

Thank you very much!

Dear Clowns Cry Too,
Your email name says it all. Fibro is cunning and baffling. In my few years of living with it, I have now settled into Cymbalta 120 mg. dose once a day--I know some have had serious side effects, and while I am extremely sensitive to side effect of most meds, Cymbalta has worked for me. This year medicare Part D has even lowered the price--oh yeah! I confess I also take CBD gel pills that by at my acupuncturist's clinic, which I rely on for flare ups during times of stress or weather changes. I also use Excedrin headache OTC, which a neurologist recommended when the fibro seems to morph into neuralgia pain.

Otherwise, daily recommended doses of arthritis strength acetominophen especially in winter as of course the arthritis is part of it all. I try to keep to an anti-inflammatory diet-little gluten, little sugar, lots of grains, beans and produce, some dairy. I use yoga, meditation and prayer. Most importantly, I see my acupuncturist 1 to 3 times a week--which is where the story of my healing really began.

I am lucky to live in a city (Tucson) that has 3 community acupuncture clinics, part of the national community acupuncturist movement. They treat in a community setting in large rooms with many recliners, placing needles in just the distal points (acupuncture speak for points on neck, shoulders, legs from the knees down, arms from the elbows down, top of the head for chi energy.) They treat 8 patients at a time, 45 minute treatments, and the price can vary from 15 to 25 dollars a visit. Soft lights, healing music, noise reduction machines help make the clinic feel very private. At $15, the fee is affordable to go as often as I need to. Most urban areas have community acupuncture clinics now. Where do you live?

I am no hippy, but Western medicine can only do so much for such an all-encompassing illness like fibro, which has only recently been seen as a legitimate illness and not a figment of the the little woman's imagination, if you get my drift.Though I have also done yoga for 30 years, which has become a very light workout now as I round the corner to my seventh decade on the planet, yoga classes for elders and disabled folks are available so one can begin a yoga practice at any age or stage.

BTW--none of the opiods really helped and the side effects were too awful.

So, in short, after 3 years of making the management of this disease my top priority, I am managing to live a simple life. I see friends, get out of the house for a short coffee date or trip to the library more days than not. Otherwise, I stay home and putter, read, do my yoga stretches, take very short (15 minute) walks, see my doctors, and keep in touch with friends and family with my phone and my facebook page.I play with my kittens, who are also a big part of my health regimen, meditate, cook real and simple meals. When I can't follow through and show up places folks are planning on seeing me, I call and let them know it is a fibro day, and everyone has gotten used to Peggy's little disability. (At first it is hard to help people understand because fibro in an invisible disability, except for the pain-lines etched in my face and the occasional need for a cane.)

I am not saying this passage has been easy. I was a backpacker, social dancer, river rafter, avid runner and hiker, softball player up until my late 50's and then the limitations came and piled up.
It took me a long time to figure out what was going on. I grieved the loss of my healthy younger body for a long time. But then I decided to see a grief counselor to help me get over the loss of mom and then shortly after, my best friend Rachel, all in the same year as I was struggling with my health, and slowly I learned how better to deal with and accept loss.

So in short, I have been willing to go to any length to have a life, have mobility, and through trial and error, found ways to manage. I am committed to cultivating hope and use prayer as well. Two of our dearest friends died this year of cancer, so I also remind myself that we all age and suffer, and try to keep the bigger picture in mind. Good luck to you on your journey
Love, PeggyAnn

@peggyann69 Thank you for taking the time to “spell it out”. You have made so many good decisions that support the reality of aging and reflect acceptance of physical limitations with gratitude for every day.

@peggyann69 Thank you for your post I have Fibromyalgia for along time ,have heard of how much accupuncture helps but I fear needles and haven't been able yet to bring myself to do this after your post I'm more encouraged to take the plunge and do it

I encourage you to try. The needles the community coop uses are very very thin gauge--I hate needles too, but these are thinner than any sewing needles--these come in sterilized packs and then are put in medical waste bins afterward. If you feel any discomfort, the clinician will readjust, but usually the tiny ping of pain is because she/he has found a tender spot that needs the relief and the discomfort is resolved before he/she can adjust the needle. I love it--helps with insomnia and anxiety as well and many other issues. Good luck!

@peggyann69 Thanks I think I will you have encouraged me thanks I,ll talk to my Dr. about suggestions for one in my area.

Hello, I am very new here. After many traumas, I was diagnosed with fibromyalgia and chronic pain and fatigue syndrome and just recently neurodermatitis. I never had a pimple in my life. All of this is so new to me. My psychiatrist put me on Effexor 2 years ago and lied to me about weight gain and side effects on it. I was like a zombie 24 hours day. I finally had enough and told him it wasn't working for my pain which he prescribed it for me. I was talking 150mg and I started weaning off last week and have been on my own. The withdrawals are horrifying but I'm not stopping this process. I was told that this process is different for everyone. And my anxiety and panic attacks during this process is pure hell. So I was given Buspurone. And told that I could also take Benadryl and chamomile caplets. Which work good. Is anyone taking anything else for these issues ? Thank you very much ❣️

After being in horrible abdominal pain since last July and being told nothing was wrong — except perhaps fatty tissue, I had emergency surgery to remove right bowel and lower small intestine. Keep searching for answers. Don’t give up. Listen to your body.

@shadowandlady
Welcome to this group! There is actually another group all about Effexor and weaning off. I do suggest you seek it out.
Everything you are talking about regarding the impact of weaning off the Effexor is 'normal'. The secret to coming off the Effexor is to do it VERY, VERY, VER1Y slowly.
I am currently in the process weaning and I am taking it very slow. So far, so good. There are those who reduced too much, too quickly and actually found themselves in the hospital with severe anxiety, vomiting, stomach pain and more.
For me, I have been on Effexor longer than I can remember. I was taking 75 mg tabs, 2 in the morning and evening for a total of 300 mg. I began my reduction by cutting one of my evening pills into 1/4s. I reduced only one of the pills by 1/4 every other night for 3 weeks. When I saw I was OK, I took the reduced amount every evening for 3 weeks. When I was OK on that, too, I reduced the evening pill another 1/4 every other night for 3 weeks (that is a total of 1/2 of one pill at night). I did well, so I started taking the dosage every night. I am currently reducing another 1/4 of an evening pill every other night. I expect to do it for 3 weeks. If all goes well, I'll then take that dosage for 3 weeks every other night.
I am sure you see the pattern. 1/4 reduction of one evening pill every other night, followed by 1/4 reduction every night.
You need to read your body. If withdrawal is too bad, then remain on the dosage until no longer having symptoms OR go back to the previous dosage.
Hope this helps!
Ronnie (GRANDMAr)

I read both of your notes on Fibromyalgia/Chronic Fatigue. I was treated for this for 27 years. Then I moved and have a new doctor. She tested me for Lyme Disease and other tick borne diseases.

All these years, as it turned out, I have had Lyme Disease and Rocky Mountain Spotted Fever.

Now, I've found out, the Lyme Disease has morphed into Morgellons Disease. The treatment is the same as for Lyme Disease, antibiotics. You may not have Lyme Disease, but if it turns out you do and you have to take antibiotics, please, AND THIS IS VERY IMPORTANT, make sure you have lab work every month you are on them to test how your liver and kidneys are doing.

Because mine morphed into Morgellons I will probably have to be on antibiotics for 2 or 3 years. Hopefully, you won't have Morgellons.

One more VERY IMPORTANT note. Do not tell your doctor you think you might have MORGELLONS. Just ask him if he will test you for Lymes Disease, otherwise, he/she will look at you and think you're crazy unless you know him personally. But, really, there is no reason to even mention Morgellons. Just ask to be tested for Lymes Disease because you read somewhere that Fibro...and Fatigue have the same symptoms as Lyme Disease.
Good Luck, God Bless,
Elizabeth. 🥀 ❣