I thought I was a strong woman. I thought I had done my very best to tame my own personal fibro dragon.
And then I tried to give up sugar and white flour--and all the wonderful foods that contain them.
And I failed. Utterly. Completely.
I was able to go off oxycontin. Ditto for the Duragesic (fentanyl) patches. But I cannot live without my sugar.
Debbie Brooks, you are one courageous woman. I hope you realize this and understand how big a deal, it is. Anyone who can voluntarily shut off her supply of sugar in this world so jam-packed with Twinkies, ice cream, chocolate cake, apple pie, and, yes, even jam, is someone to look up to. Now go look yourself in the mirror and say, "I can do anything!" Because you can.
Of course there are many treatments that are not from the pharmacy. I love aquatic therapy.
The problem comes when a practicioner does not have enough experience with fibromyalgia and/or chronic fatigue. Just the initial assessment from a physical therapist is too much for many of us. They have no way of knowing because we do not usually feel too bad that day. It's the next day--or even the second day--that brings on the major flare. The first time I went for physical therapy I was still in my thirties. The PT gave me a normal full-body assessment. I had a horrible flare beginning the next day and lasting for 6 very long weeks.
Several years later, I was again sent to PT. I told the therapist about my previous bout. She did a much-abreviated assessment for me. I hurt the next day, but did not go into a major flare. She sent me to aquatic therapy where I did my stretches and exercises in a warm water pool.
For the next 10 years, I arranged my teaching schedule around the days I would be in the pool. And that is how I was able to keep teaching long enough to be vested in my retirement plan. Without my pool time, I would have had to go on disability way too soon and with about half of my current retirement income. I cannot recommend aquatic therapy highly enough. It is a way to keep moving without painful consequences.
Many of us have special braces that support portions of our bodies and help us to function. Others sleep better thanks to our CPAC machines. Almost all of us swear by a heating pad. Massage is a godsend for many of us. Some use acupuncture.
None of these modalities involves medication. All of them help at least some of us. But many of us still need a little help from pain, sleep, or arthritis medications. Almost all of us use supplements.
Fibromyalgia is a many-faceted condition. There are many ways to treat it. Nothing works 100% of the time. Nothing takes away 100% of the pain. We just have to find what works for us today and do the best we can--knowing full well that next week or next year we will need a different approach.
Anon, Thank you so much for this clarification. I know that I was hospitalized for 6 days with the C-dif and that there were several different medications. I went home from the hospital with an anti-fungal and an antibiotic. It must have been both.
My doctor has told me since that the best treatment for diarrhea is a liquid diet with no sugars. It has worked on those times when I have used it.
Gosh it is great to have so many knowledgeable people here. Someone always has an answer.
When I was hospitalized for C-Dif, I was put on I.V. antifungals AND a clear liquid, sugar free diet. You're right about all kinds of infectious agents just loving our high sugar/high white flour (easily converted to sugar) diet. Thank you for the reminder. I get these sore spots under the boobs and in the groin that are pure fungal. Now I have one more impetus to kick the habit.
Gosh it's great that you have been able to drop sugar and white flour. It's even greater that this change has made such a positive effect on your pain level.
I KNOW I should follow your example. How do I know? The very idea of going without sugar makes me break out in a cold sweat. (Remember, my dad was a baker. We grew up with sweets for breakfast every day. I have the missing teeth to prove it.)
How did you do this? Did you go cold turkey, or did you wean yourself gradually? What was it like while your body was adjusting?
One of the many diets I've been on over the years cut down on all sugar but required 5 servings of fruit a day. (I did well, but--as usual--gained back huge amounts on the first week of "maintenance" where you gradually add back other foods. That first bowl of oatmeal is always worth 5 lbs.!)
Congratulations on your success. Please keep us all posted on how things continue on your journey without all the foods I hold near and dear.
It sounds like your A & R pharmacy is a compounding pharmacy. Most prescription plans do work with compounding pharmacists.
Your uncle's gel sounds like it was just what he needed. This may be true for many of us here, too. I know that the arthritis-like pain I get in my knees, wrists, and fingers is much better when I use my Lidoderm gel. If I forget to use it at night, my pain is much worse in the morning.
Unfortunately, there is no ONE answer for all of us here. We all have different responses to the same medications. Many of us have had horrible side effects to EVERY medication we have tried.
For those who are interested, many doctors are willing to work with their patients and prescribe a gel. One benefit to topical treatments is that they bypass the stomach. This makes those awful queasy stomach side effects much less apt to come into play.
Thank you for the suggestion, An. Just be aware that even the best treatment isn't for everyone.
I'm with Mary, no migrane should last for 6 months. I sincerely hope you mean that you've had migranes coming and going for the last 6 months.
You're not the only one of us who cannot wear a bra. Have you found some nice camisoles? Many of us here like the Cudl Duds. I always liked them, but lately I've been having trouble with any kind of trim (lace, embroidery, etc.) being just another irritant.
Please be sure to let your Neurologist know just how much this has impacted your life. Too often, we make the major effort to doll ourselves up when we go in for our appointments. Be clean and neat, but don't go all out with the makeup, heels, and other "I'm going out" type of effort. Be your normal self. This is especially true if you are in the middle of a flare up. (And, unfortunately, many of us overdue getting ready for the holidays resulting in post-Christmas flares.)
I used to make myself look good for the 100 mile trip in to see my neurologist. Then one day, I called to ask for an appointment during a major flare. I was clean and neat. I wore stretchy pants and a comfortable top. My hair was squeaky clean but unstyled. My face had no makeup. The doctor was stunned by the effect that a fibro flare had on me. I was his first patient of the day AND the last patient of the day. In between, I spent the day getting CT's, MRI's, and multiple blood and urine tests. I walked out of the hospital that day with prescriptions that broke the flare up and started me on the road to a better life.
I hope that YOUR neurologist can help you as much as mine did me. Sometimes we feel as if doctors don't believe we're really sick. Sometimes we're right. And then a caring, thorough doctor will take the time to find a way to really help. Mine told me that day, "Bette, I promise you will never be in this much pain from your fibromyalgia again." That was in 1990. So far, he's been right.
Sorry, but the news is not what you want to hear. Most of us will have fibromyalgia for the rest of our lives.
The good news is that 99% of the time you will not be at that level 9 or 10 pain. With proper treatment and a lot of pacing on your part, you will probably spend 80% of the time with your pain level around 3 or 4. You will be able to distract yourself from this pain with a little bit of ingenuity. But there WILL be some times when the pain level scoots up and invades your life.
Your job is to find out what works. Find out while the pain level is manageable. You won't have the energy on a really bad day. Stock up on pain management techniques that work for you. Ask your doctor for a "rescue" medication to have on hand for emergency use. Sometimes, somehow just having this medication takes the fear out of your equation. You know that you will not have to face the worst possible pain unless you yourself decide to tough it out.
Please check out the Tips to your right here. Some of them will seem weird to you. Skip them. Give some of the others a try. Do try warm water exercises. They are a lifesaver.
Keep as active as possible. You will be building up reserves that will be there for you next time you need them.
Your life will be a life that includes fibro. So was mine. It did not stop me from earning 3 degrees, teaching for 11 years, and raising two wonderful sons. My dear husband will attest that you can still have a satisfying and loving relationship. Friday will be the 50th anniversary of the day we met roller skating. We've been married since 1967.
Fibro is not the end of your life. It is the beginning of a slightly different life from the one you imagined. But it can be a good life. Even at 70!
Whoever decided that the only doctors to treat us were rheumys? What about our family practicioners, the neuros, the pain management docs, the endrocrinologists, the chiropractors?
What we need most is someone who can understand that this is a disease, that it affects our lives on so many different levels and in so frighteningly many different ways.
Any provider who takes the time and shares with us as equal partners is a welcome provider. We might not have known our bodies before fibro, but we sure do now. We are the experts in what is real, what is now. Our doctors have to accept that we have this knowledge, that we are superbly in tune with our bodies due to our sensitized nervous systems. We can give the doctor the clues she/he needs. The doc can go from there.
This could be neuropathy. You do not have to be a diabetic to have neuropathy (nerve pain). Your doc will probably try you on something like gabapentin (Neurontin). This type of problem often starts with tingling and may progress to outright pain and/or loss of sensation.