Reply
Frequent Contributor
Posts: 103
Registered: ‎03-09-2010

O/T Anyone have Fibromylgia ?

I am newly diagnosed and wondered if anyone would share what meds they are taking and anything they do to help the muscle aches.  Insomnia also seems to be a big issue as well.  Thanks for anyone's input.

 

Occasional Contributor
Posts: 15
Registered: ‎01-24-2016

Re: O/T Anyone have Fibromylgia ?

I have had fibro for years and relate it is very painful.  My doctor prescribed pain meds and Lyrica.   But I had a terrible reaction to Lyrica,  so I cannot take it.

Esteemed Contributor
Posts: 5,749
Registered: ‎11-21-2011

Re: O/T Anyone have Fibromylgia ?

Sorry to hear about your diagnosis.  I have had it for over 17 years.  In the earlier days before my diagnosis it was suspected to be MS.  I have terrible flares that are mostly triggered by the weather.   I had been prescribed everything under the sun and either nothing helped or I had reactions to them.  I never had a problem with addiction so my doctor did prescribe a narcotic.  A few years ago I went to a new rheumatologist who is the best in my area and he confided that none of the men's they are prescribing help.  The drug companies had to come up with something because so many are being diagnosed with fibro.   However when I'm  In a flare NO medication helps.  Get yourself a massager and I have found a homeopathic cream called Topricin that has been a Godsend.  It's a cream that athletes use and although it's pricey it's worth it.

Frequent Contributor
Posts: 103
Registered: ‎03-09-2010

Re: O/T Anyone have Fibromylgia ?

Thank you everyone.  I do appreciate your sharing about your fibro and how you are managing.  My doctor has me on Cymbalta and Neurontin.  I do not like to take the Neurontin because of the large number of side effects, two of which are weight gain and increased glucose levels.  I am taking  a low dose and some days are better than others though I am not comfortable with the side effects. Thanks again.

Esteemed Contributor
Posts: 5,749
Registered: ‎11-21-2011

Re: O/T Anyone have Fibromylgia ?


@Bowwowluv wrote:

Thank you everyone.  I do appreciate your sharing about your fibro and how you are managing.  My doctor has me on Cymbalta and Neurontin.  I do not like to take the Neurontin because of the large number of side effects, two of which are weight gain and increased glucose levels.  I am taking  a low dose and some days are better than others though I am not comfortable with the side effects. Thanks again.

 

neurontin was terrible after one dose, threw it out.  Don't know if you are aware of this but fibro patients have sensitivities to some medication.  The best thing to do is educate yourself as much as you can.  Don't let the medical community fool you , this illness is a mystery.    I was lucky that I found the doctor I did at the time or I probably wouldn't be here now.  


 

Honored Contributor
Posts: 39,554
Registered: ‎08-23-2010

Re: O/T Anyone have Fibromylgia ?


@Bowwowluv wrote:

I am newly diagnosed and wondered if anyone would share what meds they are taking and anything they do to help the muscle aches.  Insomnia also seems to be a big issue as well.  Thanks for anyone's input.

 


@Bowwowluv

 

You probably would have more replies if you started  this in the Wellness section.  JMO

Respected Contributor
Posts: 3,842
Registered: ‎04-23-2010

Re: O/T Anyone have Fibromylgia ?

Sorry for your pains.  It does have flare ups during seasonal changes,especially spring and windy days. 

I do not take any prescription drugs for this, I upped my D3 to 5,000-7,000 daily and Magnesium citrate to 800 mg, Calcium citrate 1,200 mg. I do omega 3, Tumeric 800 mg, B12. Also do stretching and massages ( try once a week). I have a neck and shoulder massager also from Q.

when u do it all religiously  it DOES help.

please do stretch every day.

 

Be well!!!!!

Respected Contributor
Posts: 4,758
Registered: ‎03-12-2010

Re: O/T Anyone have Fibromylgia ?


@SANNA wrote:

Sorry for your pains.  It does have flare ups during seasonal changes,especially spring and windy days. 

I do not take any prescription drugs for this, I upped my D3 to 5,000-7,000 daily and Magnesium citrate to 800 mg, Calcium citrate 1,200 mg. I do omega 3, Tumeric 800 mg, B12. Also do stretching and massages ( try once a week). I have a neck and shoulder massager also from Q.

when u do it all religiously  it DOES help.

please do stretch every day.

 

Be well!!!!!


I agree with Sanna.  I've had fibro some 22 years now, since I was 15.  My mom and dad also have it, but I was diagnosed as a teenager.  It is very important to identify your flare causes.  Mine is differing temps in the night and day weather of 15 or more degrees or so.  Summer and winter are usually ok, but our small bit of fall and spring really kill me.  We often have 40 degree differences between night and day.  We have hit the 90s and lows in the upper 40s/lower 50s, plus the heat index and humidity.

 

I take baths in frankinscense essential oil, use it in a diffuser, do pilates and some form of exercise each day that I can unless pain drives me to be under the heating blanket or heating pads.  Heat helps me.  We've got a gym that is getting a sauna, so I'm signing up for that.  Saunas really help me.  I did do a tanning bed for a bit for my extreme breakout of eczema a few years back and that helped a great deal for it and the fibro, but I'm super fair, so it was not an ideal solution, so the sauna will help with the fibro.

 

I don't care who you are, taking narcotics will become addictive at some point. They act to create more pain when your body gets used to them, so it starts a nasty cycle of dependency.

 

I too take 5000mg D3, several thousand of turmeric (and in my smoothies), 1000mg magnesium, omega 3 in a liquid, and weekly B12 shots and daily 5000mg as my levels are very low.  I will look into the calcium but I get tons of that from my well water.  I pretty much only drink water except for my comfort drink, organic, skim milk.

 

I did see a rheumatologist for it and he put me on topomax and sevella.  Topomax is anti-convulsant that works well with the nerve pain, but will make everything taste much sweeter, so you basically quite eating sweets.  The sevella is an approved triphasal antidepressant, SSR, for only fibromyalgia, at least at that time it was.  They both helps with the flares, but I have sense moved on to heat and other natural therapies.

 

I would do a massage, but when I flare, that feels like a vice grip is being applied and the pain lingers for hours after the massage or even just being poked stops.  I get larger bras to wear for they kill my ribs and shoulders.

 

Other than that, and a solid diet with plenty of fruit and veg.  I have managed thus far without narcotics and plan to not use them.  If I lived in a larger area, I would explore acupuncture as well.  That would be awesome to help the nerve pain.

Respected Contributor
Posts: 2,905
Registered: ‎06-23-2014

Re: O/T Anyone have Fibromylgia ?

Just make sure your diagnosis is correct. I was diagnosed with it about 15 years ago. No one bothered to do an MRI. After cycling through a ton of meds and PT, I was still in agony. Finally went to a neuro on my own who did an MRI and nerve studies. I have herniated discs and about every spinal abnormality you can have. I also have nerve damage that maybe I wouldn't have had if I had been diagnosed properly to start with!

 

I'm still in agony, lol, but did get periods of relief with spinal injections and other treatments. I'm still getting evaluations and treatment but at least now I know what I'm dealing with and I have a pain management Doctor. 

 

Actually, I'm still hurting and not where I want to be, but I'm up and moving every day. When I was diagnosed with fibromyalgia, I literally could not get out of bed for days. They are too quick to do the physical point test and say you have fibro. 

 

Good luck to you!

Respected Contributor
Posts: 3,842
Registered: ‎04-23-2010

Re: O/T Anyone have Fibromylgia ?

Yes, Tigriss!!!  Sauna!!!! Love it, works miracles. Swimming is great too.

And hydrate,hydrate, hydrate. Drink a lot ( water!) 

When I get a chance to go to Carribean I am in heavens. I stay in the water as long as I can. Ocean is healing everything.