Facebook: NEW "Lumigrate: Fibromyalgia Health Education Counseling" Fan Page & Page of "Candace Grande", Health Educator!!

I hope I got on the FMS side now! I think its been about 3 yrs now. I have gone through many back surgeries and my symptoms just worsen. I just had several ESI's in my upper spine in my neck with no help just more pain, my lower back is fused I have had 3 surgeries 1 was to remove the hardware that busted loose, I have pain all over. Osteoarthitis a pacemaker and all the other symptoms including IBS. I hate taking pain meds so I take low doses the Doctors suggest a pain pump! Any feed back on those would be helpful or any other tips you have. Thanks

Question does steriod injectios make your fibro pain flare up or trigger more pain? They lit me up.

 Hello,

 Thank you for responding to my post! You also have quite a history! Unfortunately, all women and men who have FMS are often different and need to find what works for them. I personally do not take pain meds for my FMS. I generally try to eat healthy, exercise, and reduce my stress levels. I am not a big fan on the pain meds, or any of the FDA approved ones for that matter. There are alternatives to pain meds, such as muscle relaxers which can be taken when needed but it also depends on how you feel about them. This should be discussed with your doctor and may be necessary to try to find the solution that works best for you. I apologize that I can't be a bigger help in this area.

As far as the steroid injections, I also had a bad reaction to them and ended up in more pain than before I came in! For some people they are helpful, but for some they are more of a burden since it causes more pain. I understand where you are coming from because I also have gone through it! 

I hope you start to feel better soon! 

-Candace 

Talking helps get your mind off pain, if your single as I am its hard to find someone that cares. What if we had a way for singles to call one another ? Hearing a voice can make your pain level lower. What if we had a singles group and see if there could be a way to talk to one another? I can't find many non fibromyalgia ladies that want to listen or even care about my illness. This does not need to be a dating service or romance club but just a way for singles to talk and listen to one another? Just an idea from a lonely guy in Texas

My thoughts about what Gino's suggested is that he raises a lot of good things!  Socialization is really important for everyone.  People who are married might say that they also don't have enough support around them, and I've really been trying to get qualified psychology / family therapy / behavioral health people to get involved with Lumigrate.com and that's hopefully going to have increasing input.  Keep in mind, many of the people who have no 'qualifications' that write here are show incredible wisdom (read the Your Story About Your Fibromyalgia sometime).  I think that for now people continuing to get to know each other here in the Forums and using the facebook pages and going from there with messages and whatever they want to reveal, not matter their single / married status is a wonderful way for people to connect at whatever levels they are wanting and needing. 

But it's an interesting thought about a dating service for people with health issues... if people will pay for Match.com but not for a $20 hour long video about health ... it's probably smart to look at what people want!

I'm sure Candace can jump in here too --- wanted to put in my thoughts too!  

Mardy

hi i'm janie and i suffer fms, ibs, rhumatoid arthritis, spinal degeberation, narcolepsy, cataplexy, restless leg syndrome, and ocd i am wearing a thirty day heart monitor to see if there is a problem with my heart, i have rapid heart beat and a murmur. i've had fibro since childhood but was only diagnosed anout 8 yrs ago. pain meds don't work for me. so i just suffer thru. i can't every recall feeling good. i've been exhausted all my life. I had ( pardon my spelling) Giome Barre when i was 11yrs and was paralized in my right side and bed ridden for a year. the stiffness and pain slowly worked its was up my body hitting every joint along the way till it reached the base of my skull . I suppose it couldn't go any farther. I had ovarian cancer which we caught before it spread thank heavens! At age 23 i had a compleat hystorectomy. my son was 1&1/2 at the time. Does anyone know something that might ease my pain that is non narcotic? pain meds don't work and i take very high powered meds for my narcolepy. any and all advice will be welcomed!

I thought since I have a little different history -- as any two people will -- I'd hop in about what Gino and Candace were discussing.  I've put a lot of information in the Fibromyalgia Forum titled 'Your History of Your Fibromyalgia' in case anyone wanted to know what all I've done, as I have gotten better.  It's been a very long road full of things that did and didn't work and a lot of 'who knows'.  I would not have been able to create Lumigrate had I not gone to the Stedman Hawkins Clinic in Vail and had injections.   For me, it completely would remediate my pain for almost two months and help for another month or so after that.  In THAT time then I'd be able to make headway on exercise, cooking and eating better, etc.  I didn't want to do them long-term as my naturopath's opinion (and this is supported by the doctors at Vail I believe) is that it would lead to things breaking down in the long run. 

I think it's very important when talking about pain medications to talk about whether it's a narcotic in discussion or not.  And whether it's an OTC or not.  Just the area of medications for treating  pain is something we could potentially ask one of the doctors/ MD/DOs to write for us about.  I'd very much value Dr. Jerry Rand's opinion on that, as well as Dr. Spurlock, Dr. Rollins, and Dr. Hammerly (who hasn't gotten to writing at Lumigrate just yet bug he's contributed in something I have in the blog about other things to do for cold and flu. I know that I learned a lot from an MD about muscle relaxants and in particular the ones that affect the substance P.  He's not one of the possible contributors here because he doesn't 'get' the idea of the patient being in control of their 'team around them', at least so far.  I can hope that he catches onto that.  (Brilliant doctor but not a 'team player').  Doctors, in my opinion, who can't embrace the concept that if they share what they know with other doctors and providers, aren't embracing how they then 'move up' to a mentoring and leadership role and trust that there will be plenty of NEW work for them, as the others are picking up some of what was their work with other patients.  I understand where they come from though, as I encountered it as an OTR when someone that referred patients to me for what I specialized in asked me to train her clinicians.  Quid pro quo has to exist. 

So there's LOTS to learn and I really like the start to this new health educator / counseling role.  Keep in mind we're all wearing two hats sometimes -- as a person with fibromyalgia and then in the role as a person who is looked up to as a mentor or leader.  And Candace did a wonderful job there of stating her opinion as opinion, what is her personal experience as being hers among others and the options.  I really tried to say that with the health care reform concerns or anything related to health: Learn, state your opinion as such and facts as such, quote your sources when possible, and then discuss it with respectful language and tone and with people who are worthy of your conversations.  

Sounds to me like Candace has some tricks and info up her sleeve we can learn from related to what SHE does as alternative therapies.  And we have LOTS of resources of experts who can come in and write about those things too....  As she knows, with health education a lot of the time it's a matter of finding your sources (valid, progressive, streamlined, FUN we hope -- overall) and then just asking them to come 'talk'. 

Thanks to everyone who is contributing to the Lumigrate 'phenomenon'.  Looking forward to lots more 'talk'. 

Hi Janie,

  Mardy definitely gave you some great info!! Instead of narc- pain meds.. my primary prescribed me with a muscle relaxer to take when needed. Now, I only use it when I am in so much pain I can barely function. Honestly, I try very hard to "manage" and survive without medications. I have bad luck with them and my body generally rejects all of them... I do therapeutic yoga, non-strenuous activity - such as an elliptical or a cross trainer machine (less On the knees) and try to eat right (easier said than done!) Ive found that it is almost necessary to "guess and check" what works best for you until you find your fit. Every person who has FMS (among many other disorders) do not have a set way to "treat" or in our case, manage it. It is a process to figure what helps you. I am still searching for a solution and most days just manage to make it through the day. I can't remember the last time I've woke up and felt good! But rest assured one day, we all will find what works best for us!! Hope all is well! :)

Part of the 'challenge' here with the Forum areas is going to be to have enough people knowing their way around here, as they have 'ownership' in it due to their participation, to keep the 'cats herded' so to speak.  Since Janie's question was so related to medications, I want to remind people that I created a forum recently JUST about medications.  The reason?  Some of the medical providers that I'm encouraging to come read and write are more inclined about medications.  Some are more about herbs.  Some more about food.  Some more about mental processing.  Some more about things such as energy (Tai Chi, Chakra/YogaDance, etc.).....  So here's the link for that (below).  AND there is also a link for the area of the Forum / Pain Management and Medicaton Wisdom (which was getting kind of LONG and it was mostly people with fibromyalgia and we're going to be getting many MORE people now with chronic pain that are not with fibromyalgia specifically and then hopefully lots and lots more with fibromyalgia who can come and share/ learn with us!  

(And Candace impressed me ever so much our first day working on this project with her computer skills, so hopefully she'll really be able to help us with fibromyalgia 'navigate' around the Forum area.  When I was 32 and went to work for the health education department at CSU the biggest challenge was how to put the brochures for ALL that a college campus needed on health topics onto the shelves where people would find them.  MUCH easier with computers and the 'Search' button within Lumigrate (purple in the upper right area of the pages), which then have a lot to do with the words that a person sets up when they start a new Topic). 

Thank g-d for Candace (as Yenta would say!)  She's doing such an awesome job ~~ Mardy

www.lumigrate.com/forums/collaborative-care-discussions/fibromyalgia/medications-used-fibromyalgia-rx-otc-etc

www.lumigrate.com/forum/pain-management-and-medication-wisdom