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Brand New to Fibro
6 Replies
TLC4ME - March 20

Hi there, I am really glad to find this as it is all very overwhelming! I was just diagnosed last week with Fibromyalgia and have Rheumatoid Arthritis as well. I am not 100% on how to deal with everything all at once. My Rheumy nurse told me over the counter meds will help, but I now suffer from migraines, of course the aches, pains, tiredness, etc. People say Yoga and hot baths but I am a single mom and don't have the funds or the time to do everything. I am just a little overwhelmed, scared, sad, defeated but hoping that all is just a matter of time until it gets better!

Thank you for listening.

 

Fantod - March 21

TLC4ME - Welcome to the board!

FMS is a disorder of the central nervous system that causes widespread, chronic pain. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. OTC remedies like Tylenol and Alleve are not effective for the type of pain associated with FMS.

FMS is recognised by the Centers for Disease Control, The World Health Organization and the National Arthitis Foundation.

There are now three medications used to treat FMS. They are Lyrica, Cymbalta and Savella. You have probably seen the ads on TV for Lyrica. Cymbalata addresses both the pain and depression that usually accompanies FMS. Savella has been used in Europe for decades and was approved for use here in 2009. A key point to remember is that the longer a chronic pain cycle continues, the harder it become to manage or stop. Once you start medication it could take a month or more before you notice any change. Typically it takes time and tinkering to find the the combination for each person with FMS. There is no set treatment protocol as all our symptoms vary.

You are tired and sore due to a lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to heal themselves from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. You should be on a sleep aid like Amitriptyline for this issue. This is a crucial part of treatment.

With regards to diet, there are some things that you should avoid. Deep fried foods, lunchmeat and red wine (nitrates) may increase your pain level. If you use an artifical sweetner including Splenda - get rid of it. Replace the sweetner with something made from the nontoxic Stevia plant like Sun Crystals or Truvia. You can find the latter in the baking aisle of the grocery store. Most people with FMS also have chemical sensitivities to some degree or another. The items that I have mentioned are at the top of the list for people with FMS to avoid. No sense in adding to an already uncomfortable situation.

I'd like to recommend that you pop onto Amazon and order "Fibromyalgia for Dummies." It has good basic information which you should read and then pass along to family and friends. Knowledge with action is power.

It is still a battle to find knowledgable, fibro-friendly doctors. You can go to the National Fibromyalgia Association website and see a listing for your state. Or, check with your local hospital website or call the physician referral service and have them match you up with a rheumotologist and/or a pain specialist with and interest in FMS. You will have to learn to be your own best advocate when it comes to getting decent care for this chronic health issue.

There is no easy answer about how to live with FMS. Everyone goes through a grieving process as they come to terms with having a chronic illness. If you continue to struggle with this diagnosis, I'd like to gently suggest that you consider seeing a counseler who uses Cognitive Behaivoral Therapy. That would give you the added support and some tools that you need to work through this situation. All of us have had to relearn our lives and how to live them now. Pushing the envelope will only set you back further. Learning to say "no" and not feeling guilty about it and respecting your limits is very important. Stress of any kind is not our friend. It makes FMS symptoms much worse. Try to accept what you can not change to make life more liveable.

If you are interested, take a look under the "General Discussion" heading for information about Skype. Noca/Keith is our spokesmodel and fearless leader for this enterprise. If you have a computer with a microphone, you are all set. Skype calls are free between users anywhere in the world. It takes about 20 seconds to download the program. Find Noca on Skype and you'll find the rest of the mob.

You've definitely come to the right place for support and information. You are not alone with this vile syndrome. We'll help where we can and if you just need to vent - have at it. Take a look at the blue boxes on the lefthand side of this page. Lots of good information there too. Take care and keep in touch.

 

mdak - March 21

TLC4ME- I am glad you found this site. I am kind of new by a few months. I have learned so many things that has help me greatly. I am now reading the Fibomylagia for dummies now. I just wanted to tell you that I did find mine at a use book store for only a few bucks. I have to stay on a budget too. Who doestn't these days. lol. I also had to seek a counselor and one of my Dr's hook me up with one I could afford. They go by income which makes a huge difference. So there are many ways I have learned to help my FM with my budget. Anytime you have a question or need to vent, please do so. We all get something from each other.

 

January - March 21

Hi TLC4ME - I agree with Fantod about the OTC pain remedies. They really don't work on fibromyalgia pain. And they have nasty side effects when used for too long. If you can handle it, low dose opiates are a good treatment for the kind of pain we have.

I completely respect Fantod (as she knows) but I take a somewhat different approach. Before you take Cymbalta, Lyrica or Savella, google and read up on the side effects. Read the forums about peoples' experiences. They do work well for some, but for others they are very problematic. (I suspect this is because we have different underlying diseases, but we are all lumped into the fibro bag.)

The antidepressants didn't work for me - they made me worse and affected my memory - and I gave them a good long try. Cymbalta put me into diabetes - which resolved when I quit the drug. I've heard enough about Lyrica and Savella that I won't go there. All these drugs cause dry mouth which will wreck your teeth and gums over time. But we all have to decide what trade offs we will accept to get relief.

For me, what worked the best for pain, fatigue and depression was a strict gluten free diet. It took over a year to see a difference. (It didn't cure me, but it really helped.) There are other posts here on that. Lots of us have multiple food allergies. You mention RA and migraines, both linked to food allergies.

Fibro overlaps with a lot of other diseases. When you hear drug ads saying "It is thought to be…" take note of the careful wording, because nobody really knows, yet the drug companies are minting money with their fibro drugs. Fibro symptoms overlap with things like Lyme Disease, Gulf War Illness, Epstein Barr Virus, chronic fatigue, and mycoplasma infections, to name a few. Antibiotics or anitvirals might help with these diseases. If you're interested, you can spend many hours researching online. As Fantod said, you have to become an advocate for yourself, because a lot of doctors are not well-educated about Fibro, nor about other diagnoses that tie into it. In fact, you might need to educate them a little.

My feeling is that there is a big bag called "fibromyalgia" - into that bag go all the patients who are in pain and exhausted and need extra time; so you get a quick prescription for Cymbalta. Many doctors are taught that all fibromyalgia patients are depressed hypochondriacs. That means you will get a drug and not much attention for anything else. Hopefully you have a decent doctor who will listen to you as an individual and work with your specific symptoms.

As Fantod noted, the things you need to treat asap are your exhaustion, your sleeping problems and your pain. There are drugs you can take, as well as natural supplements. For example, melatonin helps with sleep. I take SAM-e to help with pain, and a lot of supplements to help with fatigue. You have to experiment to find what works for you - and check with your doctor to make sure you aren't causing interactions or other problems.

Fibromyalgia is a serious disease that nobody really understands yet. Do everything you can to support your immune system, get rest, avoid stress, take the best multi-vitamin/mineral support you can afford, and other supplements as needed, eat the healthiest diet you can - organic if you can manage it. Stay away from toxic chemicals in your food and environment. And before you take prescription drugs, do your own research and talk to your pharmacist. There are other helpful modalities also - things like massage therapy, acupuncture, chiropractic and counseling.

Hope you feel better soon!

 

lacey - March 22

Hello TLC4ME,

I'm relatively new here as well and have only just begun my journey with a new doctor and the start of finding medication that will help me on my way.

There are few things of interest in Fantod's reply.

1. I was told that Splenda is real, not an artificial sweetner.

2. So far I have tried Cymalta and now Lyrica and both are giving me migraines.

3. the best pain medication I have found for pain relief is anti-inflammatries and an asprin with codiene in it.

If you are interested, I wrote a topic called 'What I do for pain'. Of course it may not suit you and as for all the other stuff Fantod has written, I can't vouch for, as I have only just been diagnosed myself but, will certainly be trying his/her suggestion on what to/not to eat.
I love resident experts, such as January and Fantod on these types of site because they have been around for yonks and give great tips.

Keep up the good work Fantod and January. You have helped my a great deal already.

lol, I've done so much reading in the last 2 weeks, I'm almost blind.

TLC4ME don't forget to read everything you possibly can. It's a real eye opener. Some will depress you but other stuff will will allow you to see whats ahead and how to handle it.

Good luck!

 

Fantod - March 22

lacey - Splenda is made of sucralose which is an artifical sweetner. Did you know that a sweetner like Splenda or Equal will actually make you eat more? All the more reason to avoid them. Take care.

 

January - March 23

Hi Lacey - just caught your post, and thank you for the kind words. One of the things that makes me feel good about having fibro ( huh??) is sharing what I've learned over the years - though I know it doesn't apply to everyone!

I'm a relative newbie though, and a fan of fantod who has been here a very long time and constantly blows my mind with her expertise! And there are other very knowledgeable folks who pop in from time to time.

Sorry to hear you are having migraines with the Cymbalta and Lyrica. Maybe you are one who will have to go a different route. And most everyone I know with fibro eventually has to move to something stronger for pain than over the counter meds. I'd guess what is helping you the most is the codeine? Be careful about tearing up your stomach with the anti-inflammatories plus the aspirin. All are very hard on the stomach - sometimes bad for the kidneys too. I took the NSAIDs for years, until my doctor told me to stop. Now I can't tolerate them at all.

 

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