1. < Fibromyalgia

Fibromyalgia pain: Let's connect

Posted by clownscrytoo @clownscrytoo, Oct 22, 2016

Is there anyone here that suffers from fibro? I had the 'tender spot test' several years ago and I had 17 out of the 18. I try my hardest to get through the pain with my 4 hydrocodone/acetaminaphine pills a day, Tiger Balm rubbed into areas that are the worst, light exercises, and distracting myself with hobbies or chores, etc; but there are many occasions where none of that helps and I spend most of the day holding down the couch, getting up about 30-45 minutes after that, walking/standing around the house for 15-20 minutes, or sitting for about 15-30 min. I do not drive and my husband works 6 days a week, overtime almost every day, so I'm alone a lot. my wonderful husband is very supportive and I am very grateful for that, but my only other friends are online, out of state, and I will probably never even get to meet them. when extreme pain takes over, my depression takes over and it is so difficult to find hope. does anyone have tips for fibro, whether diet or over-the-counter meds (I've tried them all, I think), or anything, besides hobbies and such? I've tried every over-the-counter med, and the Tiger Balm does cover some of what the pain pill doesn't help, but I'm hoping one of our members might have some knowledge that could help. I'd really appreciate it.
hugz,
Clownscrytoo

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

lioness | @lioness | Jan 20, 2018
In reply to @kellye5 "HI @jlfisher56. I have all of your symptoms including numbness and some cognitive and speech issues...." + (show)
@kellye5

HI @jlfisher56. I have all of your symptoms including numbness and some cognitive and speech issues. I will be seeing and integrative MD in Winston
Salem next week. However, I have found that heat and regular massage helps most. I will not take fibro meds except advil when really bad. I do not sleep well and have chronic fatigue. The neuro symptoms are becoming more frightening and hope to gain some information on that soon. The joint pain can be breathe taking is exhausting but massage oh and chiropractic care if done regularly doe relieve some of the symptoms keeping me able to work as a principal 5 days a week (most weeks).

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I've suffered
From dry mouth for years ,also dry eyes ,wonder if this goes along with fibro like he CFS ?anyone know?

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LynneB | @lynneb2110 | Jan 20, 2018
In reply to @kellye5 "HI @jlfisher56. I have all of your symptoms including numbness and some cognitive and speech issues...." + (show)
@kellye5

HI @jlfisher56. I have all of your symptoms including numbness and some cognitive and speech issues. I will be seeing and integrative MD in Winston
Salem next week. However, I have found that heat and regular massage helps most. I will not take fibro meds except advil when really bad. I do not sleep well and have chronic fatigue. The neuro symptoms are becoming more frightening and hope to gain some information on that soon. The joint pain can be breathe taking is exhausting but massage oh and chiropractic care if done regularly doe relieve some of the symptoms keeping me able to work as a principal 5 days a week (most weeks).

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Yes it does. Alas.

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LynneB | @lynneb2110 | Jan 20, 2018
In reply to @kellye5 "HI @jlfisher56. I have all of your symptoms including numbness and some cognitive and speech issues...." + (show)
@kellye5

HI @jlfisher56. I have all of your symptoms including numbness and some cognitive and speech issues. I will be seeing and integrative MD in Winston
Salem next week. However, I have found that heat and regular massage helps most. I will not take fibro meds except advil when really bad. I do not sleep well and have chronic fatigue. The neuro symptoms are becoming more frightening and hope to gain some information on that soon. The joint pain can be breathe taking is exhausting but massage oh and chiropractic care if done regularly doe relieve some of the symptoms keeping me able to work as a principal 5 days a week (most weeks).

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My rheumatologist had told me that flexeril helps some fibro sufferers with the all-over pain. I don’t love flexeril, especially at first, but the side effects wear off pretty quickly (for anyone who is considering trying it).

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jlfisher56 | @jlfisher56 | Jan 20, 2018
In reply to @kellye5 "HI @jlfisher56. I have all of your symptoms including numbness and some cognitive and speech issues...." + (show)
@kellye5

HI @jlfisher56. I have all of your symptoms including numbness and some cognitive and speech issues. I will be seeing and integrative MD in Winston
Salem next week. However, I have found that heat and regular massage helps most. I will not take fibro meds except advil when really bad. I do not sleep well and have chronic fatigue. The neuro symptoms are becoming more frightening and hope to gain some information on that soon. The joint pain can be breathe taking is exhausting but massage oh and chiropractic care if done regularly doe relieve some of the symptoms keeping me able to work as a principal 5 days a week (most weeks).

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I was watching a Doctor Dan Claw, Director of Pain and Fatigue Center of the University of Michigan. Explanations and reasons why drugs work in fibromyalgia ...due to "chemicals/transmitters" in the brain are the main focus. He is not "happy" with opioids for fibromyalgia and has seen positive clinical trials of cannabis but hasn't done any himself. I am surprised because yesterday a fellow pain member in our group thought a doctor gave him an anti-depressant called Tramadol. I told him it isn't and is a synthetic narcotic. This doctor uses it in fibromyalgia because it acts as a "weak anti-depressant" (like Savella/Cymbalta he stated) "gamma hydroxybutyrate".which I question. Savella is a selective serotonin and norepinephrine reuptake inhibitor which is why some anti-depressants work in fibromyalgia. Black box warning came out a few years ago for Ultram/Tramadol because as a synthetic narcotic, people were told it was non-addicting and IT WAS! There was talk of taking it off the market but they didn't. Lots of info about what happened is on the net but I never heard of it being marketed as an weak "anti-depressant". I am sure the Clinician is excellent but as he states, he never has felt "pain" so it is very hard in my mind to be sympathetic and empathetic to people suffering with it! He does have good medical info though if you want to watch on YouTube.

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capefibro | @capefibro | Jan 20, 2018
In reply to @kellye5 "HI @jlfisher56. I have all of your symptoms including numbness and some cognitive and speech issues...." + (show)
@kellye5

HI @jlfisher56. I have all of your symptoms including numbness and some cognitive and speech issues. I will be seeing and integrative MD in Winston
Salem next week. However, I have found that heat and regular massage helps most. I will not take fibro meds except advil when really bad. I do not sleep well and have chronic fatigue. The neuro symptoms are becoming more frightening and hope to gain some information on that soon. The joint pain can be breathe taking is exhausting but massage oh and chiropractic care if done regularly doe relieve some of the symptoms keeping me able to work as a principal 5 days a week (most weeks).

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I've taken Tramadol and Tylenol, the combo in Ultram, for five years for severe FM pain. Consultants I've seen have confused it with Tofranil (antidepr), Triavil(antidepr), and numerous other meds beginning with T! Doctors don't know much about meds or nutrition! Tramadol is a weak junior opioid that somewhat operates in the endocanbabinoid system, unlike morphine or other opioids. It is only marginally effective for me, takes edge off, but not addictive. I've stopped it for a few days with no problem, just increasing pain. I've tried oxycodone but all it does is knock me out and not relieve pain. Pain management is a tough endeavor that you think medicine would have figured out by now but they haven't. They can make you a zombie but keeping you functional while relieving severe pain...only for a few fortunate people, just depends on individual chemistry.

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lioness | @lioness | Jan 21, 2018

Hi everyone I have the cbc ointment I use on the trigger points ,it works as you say I live in Calif.I wish all states would realize the benefits for people in chronic pain.

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lioness | @lioness | Jan 21, 2018

Read momo6 I'm so glad you posted about guifenesen.Back in the 80-90s,there was research into this but I never heard any results? Now I have so much mucus I have been using some but not on a regular bases.If your friend feels it helps I think I will start to take some everyday.Thanks for posting I have had fibromyalgia 30yrs,then in 2005 fractured my back so I have pain every day .One thing I discovered i
that taking higher doses of magnesium oxide in Fibro Malic, research says we fibro people need a higher dose then others.

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Nanci | @nancirae | Jan 21, 2018
In reply to @parus "@clownscrytoo I am in one of my lows and lack energy to even think about doing..." + (show)
@parus

@clownscrytoo I am in one of my lows and lack energy to even think about doing something. Depression engulfs me when the pain gets worse. Loneliness takes any energy that may have hidden a way. Is what it is. In that dark chasm of not wanting to try. Any of the meds for fibro mess terribly with my mind and I become suicidal on most of them. The Cannabis thing is illegal where I reside and dubious about this as a solution. With the quirky reactions I have to medications I shudder at what this may do. Just because I can no longer work does not mean I am happy w/o a quality of life. I find some quality at times. Excuse please, head not thinking positive at this time.

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It is a muscle relaxer. My doctor explained to me it works with the brain to help you sleep and not wake up so often. If I don't take it I wake up many times during the night. I only take it at bedtime.

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Texas Freedom | @oregongirl | Jan 22, 2018

Texas will be the last to approve the use. my pharmacy told me they have the capsule drug and gave me the medical name for it. I will meet with my doctor tomorrow and while there ask to give me approval to use this. I have never used Capsules. In Oregon, I used Oil in battery operated holders I have not had it for over 6 month since I moved to Texas. What is wrong with our Country when a drug can work so well and they say it is not approved. Many people are in pain. It affects your attitude and brings on depression. When just a bit of oil can heal it all. In Genesis of the Bible, God said I give you ALL the herbs, plants etc for us to eat. Now I am not sure about whether He meant Marijuana.

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LynneB | @lynneb2110 | Jan 22, 2018

Oh, bless you, @oregongirl. I’m pretty sure if it was intended for cannabis to be excluded in Genesis, it would have said so! It is a drug that clearly has so much lower an impact on the body than alcohol, even. How it has been so politicized that some in the highest offices in the land have resorted to issuing untruths about it is beyond me.

Regarding my fibromyalgia, it can put an instant end to my gut upsets, from nausea to D., pain, headache, jaw ache and clenching, anxiety and sleep issues. It can, in many instances, be used in lieu of opioids for long term pain.

The world seems to be coming around, but slowly. Let’s hope Texas hurries up.
XO
Lynne

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