Fibromyalgia Community
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Avatar universal

Some fibro questions....

Hello, I am new here, and struggling with being sick for 4 years, and now have been diagnosed with fibromyalgia. I have questions my doctor did not answer for me-kinda brushed me off. I'd like to know if other fibro patients have had a high sed rate, (mine is 40), I have also a low uric acid level, and low carbon dioxide. (My doctor said stress, and I might not have been breathing right). I kinda have my doubts on that, sorry, but I do. I have flare ups of severe pain and exhaustion and fevers, and swelling. During those flares I do automatically from time to time inhaly deeply as if I am not getting enough air. But, that's what my doc said, just stress. Personally, I am concerned it might be a bit more than what he thinks, and he IS sending me to a specialty clinic for more tests. My lupus test came back negative, and so did my RA. But wow do I get sick sometimes it even scares my family. Anyone have these symptoms? I don't know if I'm on the right path or not, I can accept fibro, my doc said there is no such thing as CFS, so thank god I'm going to the specialty clinic in Tacoma. Please help, I am confused. If I have stress, it is from pain for 4 years.
3 Responses
Avatar universal
I'm sorry for your diagnosis. It's good to know what is wrong but with it comes a list of 1000 questions.
The best advice I can give you is everyone with FM is so different and you will need to view this as a process and  that you are your best advocate. So never be afraid to ask as many questions as you can. If you have a doctor who as you put it brushes you off I would say it's time to re-evaluate that. He or she is either wanting you to get more tests and go from there or he/she doesn't know much about FM and really isn't the person you want to make your point person for this issue.  Not to say he/she isn't a good family doctor.  You want a team behind you that not only understands FM and CFS because CFS is very real but a team that has a passion and knowledge for what you are going through.
Which speciality clinic are you going to? Is it a FIbromyalgia center?  I've heard some good things about them.  I personally was diagnosed in 1992 and have been through a lot with this.  There are many medications that can help if you are that far advanced with it.
FM affects your immune system so it is not uncommon to have flu like symptoms on and off especially until you figure out what your triggers are. In the early 90's prior to me knowing how to deal with my own FM and realizing stress, foods, over stressing my body, even my environment was causing cluster flare ups I was sick with flu like symptoms constantly.  Pain, exhaustion and swelling can be caused from diet, not enough water.  Breads, sugars, caffeine, cookies, cakes even in small amounts cause me to have flare ups.  
I started realizing that a few years ago after seeing a doctor who believed low dose of thyroid medication and removing breads, simple sugars and drinking a lot of water daily would help prevent flare ups. It didn't  cure me but changed my life. I was better able to manage my symptoms. I hope the clinic you are going to takes this whole approach.  

Also depending on what medications you are taking can actually makes symptoms worse.  So getting your pain under control, tracking what causes your flare ups and getting a plan of action in place will help you so much.  It can't always make you pain free but I guarantee there is help out there. I am here as are so many other people with FM and CFS.  I don't have CFS but I suffer with fatigue but have almost gotten that under control with light exercise, eating right foods and supplements.  I promise you there are answers.  All the best to you.  
Avatar universal
OMG, thank you so much, I was hoping and hoping I'd get to speak with someone here who has it, and this does make me think I am on the right path. The clinic I'm going to is in Tacoma, it is a specialty Rhumetology clinic so I can get further evaluations and tests, and be put on the right medication. Glad to know it affects the immune system, that was one of my major questions, (can't ask any questions to the rhumetologist until the 26th of Jan). I can't fight illness like I used to, and catch everything LOL. I also have severe allergic reactions I never had in my life. So, I was doubtful of the diagnosis, because I know my immune system is affected. Pretty sure my kidneys are mildly having problems, so that's another thing to ask when I go. I have a history of kidney stones and infections. So, there I go with my 1000 questions. Feel FREE to offer your knowledge, right now it means the world to me to feel better. Thank you!!! :)
Avatar universal
Wonderful!!! you are on the right path. I really believe going to a good rheumatologist is a great first step. That was my 2nd appointment after I was diagnosed. The rheumatologist can rule all the things out that you want to know about now. Finding it hard to fight off things will be half your battle at least that has been my experience.

Once I figured out to some how keep that in check I had a plan in place. When we feel weak and unable to sleep or feel well everything hurts and we feel worse. So trying to keep your immune system working and getting sleep is crucial. Cranberry's are excellent for kidneys problems. Also reducing your intake of potassium and phosphates so try not to add salt or salt substitutes, it's too hard on the kidneys.
Eating a lot of eggs, meat, cocoa or chocolate is very hard on the kidneys.  
Distilled water is the best water for you.  Bottled water is hard on the kidneys and so is tap water. Distilled is the purest form and you can get it at the grocery store for .99cents for a gallon.  It's the easiest on your kidneys. Drink 6-8 ounces per day so it flushes your kidneys. Keep a water bottle with you all the time.

Again the goal is to keep your kidneys healthy as you can. Once you get in to secondary illness that's when  FM gets hard to manage.
Some supplements or herbs that can help and I only add 1 or 2 at a time, always a great one to start with is Vitamin B, in your case with kidney issues B6, Vitamin C, Calcium and Magnesium, L-Argine and L-methionine are great for kidney disease.  Something I take daily is an enzyme. In your case a multi-enzyme. Enzymes help us digest foods.

If I were you I'd start off consuming a lot of cranberry, careful with juices, they can be high in sugar, I'd also add a B complex vitamin.  Acidophilus is another thing that will help you.  Also eating low fat yogurt, cottage cheese and in your case buttermilk.  Raw Goats Milk is also recommended when your kidneys are acting up. I switch to Goats milk from time to time. It really makes a difference in how my gutt feels.

I hope this helps. As always look things up prior to taking them. I have a great book: Prescription for Natural Healing.  It gives you different illnesses and foods and supplements that might help with each illness.  Listen to the doctors but try to always keep in mind a "whole body" approach.  Loading our bodies with just prescription medications some times can make the problems worse.  I take several medications and would not be able to function without them so I would never advocate not listening or taking your medications but adding supplements and looking at the underlying  issues like "what causes the kidney problems" is so necessary in your approach to getting well. In my humble opinion, I'm not a doctor just a lot of years of trial and error.  
I wish you the very best and I'm here if you need any other info or just need to talk as are all the other members.  Take care!
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