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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.

LynneB | @lynneb2110 | Feb 1, 2018
In reply to @sandytoes14 "I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions...." + (show)
@sandytoes14

I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions. For a while now I have been taking 60 mg Cymbalta and 150 mg Lyrica. It works well to help with most of the pain but of course I have flare ups, especially when the weather turns. Lately I have been suffering from the dreaded Fibro Fog. It gets so bad that I want to cry. I get frustrated when I talk and can't think of what I want to say. Sometimes I even lose my train of thought mid sentence. I don't know how to describe the feeling other than my thoughts are no longer clear but like I have stepped into a cloud. A few years ago I had a complete neurological workup. The only thing that was shown were tremors.
Do you feel like this? What do you do when this happens?

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@lioness, Osteo Arthritis isn’t systemic, so much as joint tissue wearing out and/or rubbing unnaturally, so I don’t know that that’s a likely cause, but the cold hands and feet I believe are typical of fibro. I could think I was cold, because of the feet especially, and put covers on at night. Then I’d immediately be WAY too hot, not even normal heat, like an unpleasant burning hot, and this would keep me flapping covers on and off forever. I finally figured out the need for socks even if it was rather warm. And otherwise, a temp that was normal for everyone else had me sweating with my hair wet, even when sitting still. NOT MY BEST LOOK. :-/

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randee | @randee | Feb 1, 2018
In reply to @sandytoes14 "I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions...." + (show)
@sandytoes14

I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions. For a while now I have been taking 60 mg Cymbalta and 150 mg Lyrica. It works well to help with most of the pain but of course I have flare ups, especially when the weather turns. Lately I have been suffering from the dreaded Fibro Fog. It gets so bad that I want to cry. I get frustrated when I talk and can't think of what I want to say. Sometimes I even lose my train of thought mid sentence. I don't know how to describe the feeling other than my thoughts are no longer clear but like I have stepped into a cloud. A few years ago I had a complete neurological workup. The only thing that was shown were tremors.
Do you feel like this? What do you do when this happens?

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Hi, I am newbie here, I was dx with FIbro in 1996 went on disability Jan 1997. My symptoms include, 21 tender points, I am in pain 24/7 365. At first the pain was truly unbelievable, I didn’t know anyone who didn’t “look” sick could have such horrible pain, my muscles tighten, I feel like I am gonna burst into flames at any given moment. My blood vessels will break because my muscles get so tight from the horrific pain. As a result I have been put on every pain medication out there only to put me in a state of bein a zombie, or in the hospital due to interaction from medications from a pain clinic results no in a overdose of meds. That will never happen again, not in my lifetime. I found Norco 7.5/325 and while I need to take 4 every 6 hours until I am way ahead of my pain that would be under a 7-8. I will go to 3 a day. But once I get behind, which happens only when a dr will retire and in their place is a dr that refuses to give Norco, I am 65 and never have abused any medications. I have always asked for a contract and blood test to keep my dr honest and myself to others. Right now I have had to relocate to care for my mom in law who has Alzheimer’s and mostly blind. So to get a Dr has been a challenge because as I was told today that one dr found my issues to complicated for.him. Really? He needs to walk in my shoes, he’s the dr. So I have zero medication and have had zero since October 2017 when another dr retired. I have Lupus, FMS, MPS, insomnia, aorta anurisium, PTSD. ADD, major depression, panic and Anxiety disorder, to the point now that I’m afraid to leave my home by my self. Thank you Drs very much. Now my pain level is off the charts for reals, I’m thinkin I will burst into flames at anytime. I didn’t ask for any of this in my life. I was a doer, always on the go. Now I can’t find a dr to help me so I will go to the county mental health office.
And I am double covered. I don’t understand it. The medication for my emotional and mental health is due to our younger son at the age of 25 being murdered in our home and me findin him alone. That was almost 10 yrs ago this yr November. And now it is like yesterday all over again. That day plays over and over daily now because I need a referral from my primary dr to see a shrink. And no dr is takin me. How fun.... drs aren’t drs anymore. Most just in it for the money and the ones who really care retire early in their career. I’m lookin here below it says pet? A bird? Yes We have 3 digs, one cat, 2 parrots and salt water fish 50 gallons! It doesn’t help, they are just more children to love and care for. That don’t move away at their adult life.
Anyway
Thanks for readin.

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randee | @randee | Feb 1, 2018

Hi, I just got The Quell, don’t know if it is workin or even work for me just have no meds. Right now

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lioness | @lioness | Feb 1, 2018
In reply to @sandytoes14 "I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions...." + (show)
@sandytoes14

I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions. For a while now I have been taking 60 mg Cymbalta and 150 mg Lyrica. It works well to help with most of the pain but of course I have flare ups, especially when the weather turns. Lately I have been suffering from the dreaded Fibro Fog. It gets so bad that I want to cry. I get frustrated when I talk and can't think of what I want to say. Sometimes I even lose my train of thought mid sentence. I don't know how to describe the feeling other than my thoughts are no longer clear but like I have stepped into a cloud. A few years ago I had a complete neurological workup. The only thing that was shown were tremors.
Do you feel like this? What do you do when this happens?

Jump to this post

Hi lioness here In so sorry for what your going through.I was diagnosed with Fibromyalgia in 1998 in Pa.I 11of 18 presure points There was a support group a the hospital One thing they told me was do isometric exercises for your arms@legs this helps to remove the tight muscles,since then I've found a Tens unit does this ,this will help you.Burning up I still have this keep your body cool,take cool showers or just wring out a cool washcloth and wear light weight clothing.Find a rheumatologist if you haven't.I take Tramadol and one Aleve at the same time.Hope this information will help you.one more thing do light exercising or water aerobics ,hard exercise will hurt you.Good luck

REPLY
lioness | @lioness | Feb 1, 2018
In reply to @sandytoes14 "I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions...." + (show)
@sandytoes14

I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions. For a while now I have been taking 60 mg Cymbalta and 150 mg Lyrica. It works well to help with most of the pain but of course I have flare ups, especially when the weather turns. Lately I have been suffering from the dreaded Fibro Fog. It gets so bad that I want to cry. I get frustrated when I talk and can't think of what I want to say. Sometimes I even lose my train of thought mid sentence. I don't know how to describe the feeling other than my thoughts are no longer clear but like I have stepped into a cloud. A few years ago I had a complete neurological workup. The only thing that was shown were tremors.
Do you feel like this? What do you do when this happens?

Jump to this post

Crazy isn't it c
Like your comment

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lioness | @lioness | Feb 1, 2018
In reply to @oregongirl "I know as my legs can only take so much. My kids are on me constantly..." + (show)
@oregongirl

I know as my legs can only take so much. My kids are on me constantly about walking. They brag about my DIL's mother and how she walks miles everyday. It is horrible to be compared to a women who does not have RA and Fibro We don't bleed so we are not ill? Its so hard to get people to understand that you are not faking an illness. I stopped taking my son to my appts. He interfers with my conversation with the doctor.

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Just had some or lunch added mushrooms and garlic ,mmm mmm good

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lioness | @lioness | Feb 2, 2018
In reply to @robbinr "Annoying that is! But do you have someone else to go with you? I know when..." + (show)
@robbinr

Annoying that is! But do you have someone else to go with you? I know when I go to the Doc, I immediately space out, start thinking of worse-case scenarios, and don't hear a word she says. Another "Quiet" person to bear witness is a good thing. I took my cousin to a Fibro clinic and her mother, my aunt, insisted on going along. Then she proceeded to tell the Doctor about her illnesses. My cousin, the Doc, and I just looked at each other over her little head and agreed that Auntie D needed to wait outside:} But I took copious notes. Even taking a small tape recorder can be helpful.

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Happy for you ,we have to keep fighting and not give in to our diseases whatever they maybe but ,a positive attitude ,healthy eating and good quality water ,some exercise and believe in God are creater is the key.I can tell you are this kind of girl Keep on ,keeping on.

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doxyjune | @doxyjune | Feb 2, 2018
In reply to @sandytoes14 "I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions...." + (show)
@sandytoes14

I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions. For a while now I have been taking 60 mg Cymbalta and 150 mg Lyrica. It works well to help with most of the pain but of course I have flare ups, especially when the weather turns. Lately I have been suffering from the dreaded Fibro Fog. It gets so bad that I want to cry. I get frustrated when I talk and can't think of what I want to say. Sometimes I even lose my train of thought mid sentence. I don't know how to describe the feeling other than my thoughts are no longer clear but like I have stepped into a cloud. A few years ago I had a complete neurological workup. The only thing that was shown were tremors.
Do you feel like this? What do you do when this happens?

Jump to this post

Hi randee, I am also a newbie. I got a bundle of problems 20 years ago. Thyroid and adrenals failed and I could not even walk. My legs were so weak that i collapsed. I was only 40 when this happened. I am 60 now. Your story sounds a bit like mine. Most of my pain is numbness and tingling that causes weakness in my calves. I too have to take Norco and Ultram to numb my legs so that I can function at 20 percent of what I used to. I know 100% what u mean about doctors. Here on Long Island 99.9% of pain doctors won't see me due to the opoid epidemic so my mother's dr. in the city writes me the pain meds. But she doesn't understand what is going on. I was given a diagnosis of fibro about a year ago from a rheumatologist -- she ran lots of blood work and after she discounted lupus and MS she didn't want to see me again???? They write u off very fast these dr's. I also have extreme insomnia and I am exhausted most days leaving me almost house bound and I have no one to help me. When I feel good I have to do as many errands as possible or I won't have food here. I have 2 little doggies and they are my life. But I worry about getting them healthcare if they need it. I don't know how u can live without the pain meds. Sorry about your mom and son and everything else but I wanted to let you know that you are not alone. No one asks for any of this - I read that fibro patients have bad childhoods. I know I did, perhaps the stress from that contributes to a weak constitution. I know I was on a diet at age 10 and could never lose weight due to a weak thyroid. Who really knows?

REPLY
Texas Freedom | @oregongirl | Feb 2, 2018
In reply to @sandytoes14 "I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions...." + (show)
@sandytoes14

I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions. For a while now I have been taking 60 mg Cymbalta and 150 mg Lyrica. It works well to help with most of the pain but of course I have flare ups, especially when the weather turns. Lately I have been suffering from the dreaded Fibro Fog. It gets so bad that I want to cry. I get frustrated when I talk and can't think of what I want to say. Sometimes I even lose my train of thought mid sentence. I don't know how to describe the feeling other than my thoughts are no longer clear but like I have stepped into a cloud. A few years ago I had a complete neurological workup. The only thing that was shown were tremors.
Do you feel like this? What do you do when this happens?

Jump to this post

Foxyjune...don't give up. I am so sorry you have this affliction. If you are a member of a church, you CD get help. You can order groceries on line. Call Sr center for meals on wheels. They bring weekend food with Fri delivery. You are not asked to pay but it helps them if you do. I wish you well I will pray for you right now.

REPLY
doxyjune | @doxyjune | Feb 2, 2018
In reply to @sandytoes14 "I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions...." + (show)
@sandytoes14

I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions. For a while now I have been taking 60 mg Cymbalta and 150 mg Lyrica. It works well to help with most of the pain but of course I have flare ups, especially when the weather turns. Lately I have been suffering from the dreaded Fibro Fog. It gets so bad that I want to cry. I get frustrated when I talk and can't think of what I want to say. Sometimes I even lose my train of thought mid sentence. I don't know how to describe the feeling other than my thoughts are no longer clear but like I have stepped into a cloud. A few years ago I had a complete neurological workup. The only thing that was shown were tremors.
Do you feel like this? What do you do when this happens?

Jump to this post

Hi Sandytoes14, I was given cymbalta by my psychiatrist but an endo was trying to transition me onto synthroid from natural thyroid - which was a big bust for the 4th time so I haven't tried the cymbalta yet. I am afraid of gaining more weight. Since my thyroid failed I have gained alot of weight. I can't lose weight cause it is 100% hormonal. Have you gained weight from cymbalta? I was told not to try lyrica as that was also a weight gainer. I could literally starve myself but gain water weight. There have been times when I haven't eaten anything due to a flu and I don't lose weight. Now my endo won't even return my phone calls because I could not stay on the synthroid. It is really sickening with what goes on with doctors. I would do anything to ease my thyroid / fibro symptoms but about 10 percent of thyroid patents can't metabolize synthroid. Oh I also have tremors like you in my legs and hands. I don't know what to do. I have bought hemp gummies but not sure if they are doing anything.

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