fibromyalgia pain

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

@tonyc55

Try marijuana with lots of cbd

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Hi @wandamiller, I also live in western New York, and this weather has been causing my fibromyalgia increased pain, as well.

I cannot take pain medications or drugs like duloextine, etc. for my pain because Mayo figured out that genetically, I don’t properly-metabolize them which causes me to receive little-to-no pain relief from them. (These drugs had actually been building up in my system causing more pain.)

As a result, I’ve been trying alternative treatments. I started going to acupuncture in January; it has helped, and as time goes on, I don’t have to go as frequently because the relief it gives lasts for longer durations.

I’m not sure if you’re able to do this with your back issues, but my pain management doctor also suggested yoga. (I’m starting in May), along with eating a cleaner diet (organic foods). I definitely feel better eating organically. I also find that stretching when I wake up in the morning, while still laying in bed, helps, and I do feel better when I walk more.

Hopefully, our rainy weather will clear-up soon, we’ll experience warmer weather, and you can find some relief soon.

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@swamma08

I was diagnosed with fibromyalgia almost 20 years ago. Nothing I have tried has helped the constant pain. My doctor will only give me Fioricet without codeine. I also have postherpetic neuralgia after a bad case of shingles 3 years ago. Every night I take a Fioricet, 3 Tylenol PMs and a small glass (or 2) of brandy to help me sleep. I know I’m headed down a bad road cuz my husband tells me my respirations are very slow and shallow while sleeping (about 10-12/min) and it’s very hard to wake up in the am. But I feel so desperate to escape the pain for a few hours that I’m willing to take chances. i’m too chicken to go out and get some of the good stuff on the streets!

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No … Please don’t mix meds with alcohol. It can have a fatal outcome. Do you have a good doctor? I have had fibromyalgia for 36 years. Some yoga moves help, but hard work does not. Even cooking and baking causes a lot of pain in my case. I eat gluten free, no additives, colors, or pesticides. I was told all night shade vegetables could add to the problem of arthritis. It is a dilemma. Taking a tub bath helps to relax muscles. Calcium supplement also relax muscles. Eight hours of sleep, and rest periods during the day when you just can’t take another step is helpful as well. Doctor’s do not advise patients of practical or alternative methods as a rule. Perhaps a wellness clinic might.

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@andilynn

Wanda, I’m so sorry you have to struggle with this awful illness. Check out the 4-7-8 breathing technique online. I especially like the YouTube videos where Dr. Andrew Weil demonstrates this simple relaxing technique. I find that it gives me a better sense of well being if I do it twice daily as recommended. Good luck. I am a chronic pain sufferer too.

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Yes, Dr. Weil has good ideas. I have been doing this type of breathing for many years. It is similar to yoga breathing.

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@2122

I tried a diet plan that a doctor wrote and for me it worked. It had something to do with not eating anything from the night shade families such as anything with tomatoes, potatoes, etc. You do have to follow it exactly but it is worth it plus you can lose some unwanted inches as well.

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@wandamiller I love them too. I eliminated them from my diet and didn’t notice any difference. I added one at a time in then took it back out. Bottom line…they didn’t seem to have an effect on me.

Liked by wandamiller

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@rhondami

I couldn’t get through the day without my trigger point tool. Mine is a Body Back Buddy. There are others, TheraCane is another. Simple design, simple idea, use it yourself, wherever you find the trigger points. I can’t believe this isn’t the first prescribed treatment for everyone with fibromyalgia! I wish I had known before… for $30-40 you cannot go wrong. Plus you can pinpoint the spot, which we all know can be difficult trying to get someone to massage in right place. Helps me relax the muscle, helps me to breathe deeper. Be careful not to overdo it at first, or you might be sore next day.

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Hi r … I read some very interesting info re fascia. I will look up my notes and forward the links to you all. Ciao, Lucia

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@wandamiller

I feel for you. I’ve been told I have fibromyalgia also. I find that diet helps sometimes. I do my best to avoid sugar. When I eat candy or sweets of any kind I suffer.
Try taking magnesium. I find it helps a bunch.
Best of luck.

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I take magnesium for dancing lefs and Charlie horses. I do love sugar but am trying to make an honest effort to stay away from it. I pay for it every time I eat it. Knowing that im not alone and having a support arena helps too. Thank you.

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@tonyc55

Try marijuana with lots of cbd

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Hi again, I am sorry to read that you have multiple problems. I also have a combination of maladies. I will have to take up these problems with my new doctor.
To the lady who started w fibro after her husband died. It is like a traumatic experience, well it is, that’s why I mentioned earlier about having had extreme stress factors. Shock brought on my fibro. Good luck to every one.

Liked by LynneB, nacc

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I have just recently started taking Tumuric 1300mg and it has done wonders for the all over pain. However, I have osteoarthritis in my hands that is very painful and I take Bayer Back and Body with Tramadol and that helps tremendously. I know we have to keep moving but there are days where that is almost impossible but I still try. I use Bio-Freeze on my back and hips, heat on my hands and back – I just keep trying different things and go and do as much as I can.

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@tonyc55

Try marijuana with lots of cbd

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Desperate, depressed, and feeling like I’m dying. That sounds like me!
One book on pain management has a meditation on pain “It’s just pain”, but
Sometimes I feel like screaming because it hurts so much everywhere.
I don’t take any pain medication other than aspirin with caffeine.
It seems like anytime I ask for pain meds, my doctor puts me off.
Maybe it is time to seek out a pain management something.
Robbinr

 

Liked by LynneB

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@lucia

Has anyone else experienced fibromyalgia

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hello all. i am asking about fibromyalgia also. can everyone w/ fiber please describe (in detail) their symptoms and pains (where, and with what severity), how long you’ve had it, and what are your medications? also, does anyone also have ptsd?

i have been suffering for approx 1 1/2 years now, with multiple potential diagnoses, finally settling on fiber it seems. i find it hard to believe that fibro can cause me SUCH intense pain, so consistently. it is often in my joints and very often deep in my bones. my whole left leg feels like it’s broken sometimes! femur, hip joint, knee joint, shin…

i have been taking sulfasalazine and cymbalta- am currently upping the cymbalta to 90mg/day and have cut out sulfa.
i have been tested for seemingly everything- am i missing something???? can fibro REALLY be this debilitating????

i am a shell of the person i once was. maybe 10-20% of what i used to be.

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In response to nakee99’s request for a description of Fibro symptoms: I was diagnosed with Fibromyalgia in 1995. I had sudden onset after a car wreck in 1991 – I was an older new mother, was trying to start my own contract writing business, and worked a full time job. I stopped sleeping with any regularity after my son was born (most new parents suffer from sleep-deprivation, mine just didn’t go away even after my son slept through the night.
The onset was debilitating overall pain, extreme fatigue, and increased depression.
I still exercised, ate a good diet, and worked scads of hours.
When diagnosed, I started on Ambien (5mg), Percocet as needed, and a variety of arthritis meds that have since been pulled from the market. I don’t remember the names of them all, but they really helped with general pain. Too bad that they were linked to stroke…
Twenty-three years after the diagnosis, I am still experimenting with what helps and what doesn’t.
I have lots of aches, I injure easily, I now take 10 mg of Ambien and 50 mg of Seriquel to sleep, 60-90 mg of Cymbalta, and Adderall to get me going in the morning. It sounds like a Paul Simon song, I know.
I went to a Fibro-and-Fatigue clinic for about two years starting in 1999 – Very Expensive. They had a concoction that was administered in a intravenous drip – lots of vitamins and lidacaine from what I remember. It was a long drive, took an entire afternoon every two weeks, and I would wind up with violent diarrhea after the infusion. The one good thing that I got from the clinic was (remember this was many years ago) an epie-pen with HGH – the real stuff, not a precursor. I used that for two years, with a remarkable cessation of pain, and much greater energy; but then the Doctor I was seeing at the clinic left with differences of opinion after the clinic changed hands – she told me that they had started using inferior supplements, and wouldn’t condone the use of HGH.
So now, I do yoga, tai chi, take my Adderall in the morning and my sleep meds at night.
I often have overall pain that responds to large doses of Aspirin, but it upsets my gut. I recently tried Tramadol, but it gave me a blinding headache and then I hurled all night, so that’s not going to work.
Because Fibromyalgia is such a bucket diagnosis, and the symptoms are the general symptoms of almost any onset illness, I think it is important to determine what started the cycle – a bug bite? a trauma? And I know that good sleep, not drugged sleep, is a primary factor on how you are going to feel. Also, you Have to Keep Moving. It all goes to heck if you don’t! My mantra is; “It’s just pain, you are going to hurt anyway, might as well be pain for a reason.”
I wish there was a magic bullet, but I haven’t found it yet. Now, HGH is highly controversial, too expensive, and virtually impossible to get (and know what you are really getting.) I know that there are “blood-doping” medications out there that work to make competitive athletes perform better and recover faster, I don’t understand why such meds can’t be offered to people really struggling with having enough energy and well being to make it through the day. Even if there were a trade-off between longevity and use, or even a potential cancer risk; I’d rather be able to live fully than continue to drag myself through day after pain-filled day. There you go, that’s my story and I’m sticking to it:} Many Regards, Robbinr

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I have fibro for over 30 years. I have found that over the years there is no pain medication that helps with the pain. Exercise for me is the only thing that helps. You must move or it gets worse. When you get a flare, rest for a while,then start moving your body. Even if it means just talking a walk. I have been diagnosed many times. My Rummatogist has given me a low dose of flexeril at bedtime. It makes me sleep thru the night ,not wake up 15 times. My fibro has improved immensely .

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Hello @nancirae,

Welcome to Connect; thank you so much for sharing your story.

I’m certain that @blindeyepug @johnbishop @contentandwell @lighhouseceliac @retiredteacher @minda77, and many other Connect members will agree that exercise can help us cope with many different conditions.
Your message reminded me of other conversations taking place on Mayo Clinic Connect, where members discuss what helps them take their mind off high levels of pain:

What Distracts You From the Pain? http://mayocl.in/2dzZdD9
Chronic Pain and Fibromyalgia – alternatives to medications? http://mayocl.in/2tj9CwL

We look forward to hearing more from you, @nancirae; is there any particular physical activity that you love, or that helps you find relief?

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@nancirae

I have fibro for over 30 years. I have found that over the years there is no pain medication that helps with the pain. Exercise for me is the only thing that helps. You must move or it gets worse. When you get a flare, rest for a while,then start moving your body. Even if it means just talking a walk. I have been diagnosed many times. My Rummatogist has given me a low dose of flexeril at bedtime. It makes me sleep thru the night ,not wake up 15 times. My fibro has improved immensely .

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Hello @nancirae, I would also like to welcome you to Connect and thank you for sharing your story. I have pain with my polymyalgia rheumatica (PMR) and I’m currently tapering off of prednisone. You are so right about the exercise – it is very important to keep at it even if you don’t feel like doing it. I’ve found that I have to do my exercise in the morning as soon as I get up to get me loosened up for the day. I try to make sure I do my exercise 4 to 5 days a week.

John

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@kanaazpereira

Hello @nancirae,

Welcome to Connect; thank you so much for sharing your story.

I’m certain that @blindeyepug @johnbishop @contentandwell @lighhouseceliac @retiredteacher @minda77, and many other Connect members will agree that exercise can help us cope with many different conditions.
Your message reminded me of other conversations taking place on Mayo Clinic Connect, where members discuss what helps them take their mind off high levels of pain:

What Distracts You From the Pain? http://mayocl.in/2dzZdD9
Chronic Pain and Fibromyalgia – alternatives to medications? http://mayocl.in/2tj9CwL

We look forward to hearing more from you, @nancirae; is there any particular physical activity that you love, or that helps you find relief?

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I do water aerobics in a pool 3 times a week. It takes the pressure off of my body and I am able to exercise much easier. I realized this is helping me to feel better.

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