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I need some advice
7 Replies
momma2zac - December 2

I was dx 6 mths ago with fibromyalgia and myofacial pain syndrome, then I have high results from a blood test for Rhematoid Arthritis.I ve had to change drs.I like my new dr , he believes in fibromyalgia, where as ive been to drs that think I crazy.I am only 30 and I can barely get out of bed most mornigs, my back, neck and shoulders are in constant pain and I wake up with my arms and legs numb.i also have persistant hip and tailbone pain.If I sit to long I cant get up by myself and even when I sneeze I feel like my tail bone is gonna rip thru my skin.He has perscribed Savella , Soma 250, and I was already taking lamactil and serogoul for bipolar.I am wondering why he treats me for the dieases and has not sent me to a rhematologist like my last dr had suggested.I am taking Ultram for pain, the Er gave it to me one night to help with pain, but my dr didnt give me an rx for pain.Will the savella or soma 250 help with the pain? I just dont know what to do.I have 3 small kids and an older 1 whos 14.He helps alot cause he knows Im in pain but I feel guilty he has do do so much to help me.Is there anything I can do to relieve some of the pain.. like exersizes or something to put in the tub to soak in..Please help..I am so frustrated with the pain

 

Fantod - December 2

Hello momma2zac and welcome to the board! This is the most comphrensive site on the Internet for information about Fibromyalgia (FMS). There is a lot of good information in the blue boxes on the lefthand side of this page. And, we have a good group of people available to offer support, suggestions or just listen when you need to rant.

Fibromyalgia (FMS) is a disorder of the central nervous system. It is correctly referred to as a syndrome. 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 do not work for the type of pain associated with FMS. Fibromyalgia is recognised by the National Arthitis Foundation, The Centers for Disease Control and the World Health Organization.

Some doctors feel comfortable treating FMS but if you think you need to see a rheumotologist speak up and say so. You have two options. Go to the National Fibromyalgia Association website where you can see a list of fibro-friendly health care providers in your area. Or, you can call your local hospital and ask for the physician referral service. See if they can recommend a rheumotologist and/or a pain specialist (I have both) that treat Fibromyalgia.

One of the reasons that you are in so much pain is that you are not getting restorative, deep sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. Treating the sleep issues associated with FMS is a crucial part of treatment. You should be on a sleep aid like Amitriptyline.

There are now three prescribed medications used to treat FMS. You have probably seen the ads on TV for Lyrica. The most common complaint associated with this medication is rapid weight gain. It may not happen to everyone but when it does most rheumotologists are not proactive about changing medications. The second choice is Cymbalta which addresses both the pain and depression associated with FMS. I use Cymbalta myself and have had pretty good results. The third and newest choice is Savella. It has been used in Europe for decades and was approved for use in the USA last year. It is going to take time and a lot of tinkering to find the right combination of medication and doseage to make you more comfortable. At a bare minimum, it will take two weeks or longer once you start on something to notice any difference.

Savella should help with the level of pain that you are experiencing. I'm not sure how long you have been on it. If it has been more than a month and things are not improved some changes have to made. What works for one FMS patient may not for another. We are all on different combinations and doseages of medication. There is no set forumla. You could try Curamin to see if that helps with your pain issues. Curamin is a spice but for this application it is highly purified and comes in capsules. I use a brand made by Terry Naturally which is available online or in a good health food store. In addition to FMS, I also have advanced osteoarthitis in both knees and degenerative disc disease. Curamin has been very helpful and I use it on a daily basis.

Your neck and shoulder pain is directly related to the myofacial problem. Moist heat and muscle rubs work well for this. You should also see a dentist that specializes in TMJ and have a bite splint made. That should relax your jaw while you sleep and keep you from destroying your teeth by clenching or grinding. If you can not afford a custom splint, you can buy a generic model at the drug store that is placed in boiling water and then fitted in your mouth. A custom splint would be a much better choice but not everyone can handle the expense. I also have TMJ and have had extensive restoration work on my teeth due to damage. TMJ can cause headaches, neck, shoulder, upper back and arm pain, vertigo and nausea.

I'm not sure why your tailbone is so sore. I would seriously think about seeing an orthopedic surgeon to see if something else is going on that has not been caught yet. If nothing else, that area should be xrayed.

Incidentally, you are not alone in needing help to stand up. By the end of the day, I can not get up off of the couch or out of a chair without assistance. I revert to my alter ego - the tin woodsman. I walk just like him too prior to a liberal application of oil.

With regards to diet, if you use an artifical sweetner (including Splenda) get rid of it. If you need a sweetner, use something made with the nontoxic Stevia plant like Sun Crystals or Truvia. You can find the latter in the grocery store alongside the other sweetners. Try to avoid eating deep fried food, lunchmeat or red wine (nitrates) as these items will also ratchet up your pain level.

For sleep, Calms Forte and/or Melatonin will help. They are also available in any health food store or the Vitamin Shoppe. Make sure you understand how to use any homeopathic supplements.

If you have not done so already, you should consider purchasing "Fibromyalgia for Dummies" through Amazon. Like the rest of the dummies series, it contains good basic information.

I'd also like to gently suggest that you consider finding a therapist who deals with chronic illness. Many of us see someone and find the extra support very helpful. I feel that this especially important given that you are having to rely on your oldest child for help. You can call your local hospital and ask for the physician referral service. They should be able to recommend someone. The other option is to use Google and see who pops up in your metro area.

The key to living with FMS is learning to be grateful for what you can accomplish rather than what you are no longer able to manage. You must learn to pace yourself and respect what your body is telling you. Learn to say "no" and not feel guilty about it. Break tasks down into more managable increments and/or not be too proud to ask for help. As you have already discovered, FMS is variable on a daily basis. This makes it very difficult to plan. Knowledge is power. Read through the blue boxes on the lefthand side of this page and look at some of the old posts to see how people manage this syndrome. You are not alone. I hope that my comments are helpful to you. Take care and God Bless.

 

Stacey373 - December 3

Honestly, I would focus more on the rheumatoid Arthritis. That scares me more than Fibro does. But you probably have to wait for the new doctor to give you all the results back from your blood tests.

It sounds to me that the new doctor is covering all the bases as if you had never been diagnosed with Fibro or anything else. Especially if some of your tests came out high or abnormal...he needs to make sure you don't have something else going on. I'm assuming once he rules everything out, he will start focusing more on the Fibro. (at least I hope so!)

As for your pain...I'm guessing that he wants to see if the Savella works first. If he gives you a list of meds to begin with, you won't know what is actually helping (and what's not) so he's starting with one of the 3 major Fibro meds first and going to go from there.

This is a process we all have to go through....especially with new doctors. it might take some time to get to where you ultimately want to be. I know how frustrating this can be....you want to just jump to the end so you can start feeling better, but the doctor wants to go through the "process" slowly.

Hang in there...let us know how it all goes... Take Care, Stacey :o)

 

LissB - December 3

Momma2Zac-
That's great your family is supportive and helps you out! You are VERY very lucky :) but don't feel guilty...

I've learned talking to alot of people online about FM that everyone is different when it comes to pain. Some things work wonders for others, but those same things may make it way worse for someone else. We all kind of have to experiment a little with what helps and what doesn't help until we find our own little thing :). For me, I've found that yoga really helps. Yin yoga is my favorite-it helps stimulate the healing process of connective tissues; I had immediate relief with this (NOT total relief-but it DEFINITELY helped alot), but it didn't last long. I had to do some moves at home the next night, but hey at least it was an easy fix for me :). With basic yoga, I had to go to a couple classes before I felt better. But with yoga, if you're home and suddenly feel alot of pain somewhere, you can at least use some moves you've learned to help ease that area.

I've heard alot of people who feel better (or can at least tolerate FM more) when they do things that make them happy, even if it's only for 10 minutes a day. For example, take a short walk around the block with your kids, or if that's too much-take a short walk around the back yard :). Just being outside for 10 minutes on a beautiful day cloud watching....just sitting with your kids for 10 minutes...Petting your dog or cat for 10 minutes...

I've also learned that people with FM (myself especially) tend to get frustrated with the pain and focus on it, which just causes more stress and frustration and depression and more pain...but we need to focus on positive things, and things that make us smile. It's not going to cure us, it's not going to be 100000% better, but these things DO help because they strengthen the mind, soul, heart, and body. Think about it-even before FM-could you deal with a difficult situation better when you were happy and refreshed, or when you were sad and miserable?

For me, when I was with my family on Thanksgiving, smiling, laughing, sharing stories, I forgot about the pain. Yea it wasn't permanent but it WAS a little time of relief. I decided not to take any pain medicine or antidepressants for FM because I'm only 23(almost 24). I don't want to deal with side effects or dependency and I don't want to be tied to a pill for the rest of my life. I understand some people need it and use it, and believe me I'm not putting them down. This is just my choice-I'm going cold turkey and trying simple life style changes. People have even had relief by simply dieting (nitrates-like lunch meat-have been associated with inflammation, causing more pain)...but even with dieting you have to find your own thing cause some people say a vegan diet/raw food diet worked wonders, other say eating a regular diet (minus nitrates/nitrites) and having everything organic helped (even meat).

So for now, my advice is to try everything and anything until you find something that works for you :)...I know there's nothing I can really say or do to make it better, but I'm here to listen and help in any way possible :)

 

slb71 - December 4

i agree that laughter is one of the best medicines! maybe it's just a much needed distraction to the pain & everything else. i have a couple employees at work that make me laugh a lot & it does make me feel better! my daughter also makes me laugh daily! i am blessed to have her & my employees understanding & support. my employer is another story as well as a few family members. so i try to avoid those situations and stick with the ones who make me smile!

 

momma2zac - December 4

Thanks so much for the input.I see the dr again tues.I should have my labs back by then.I am feeling a lil better today than the past few, but my hands are starting to bother me, this cold is terrible on my bones and joint,Again thanks for the help

 

axxie - December 4

Hi momma2zac - rhematoid Arthritis, so your blood test shows higher than normal results. Rheumatoid factor is an antibody that is measurable in the blood, an antibody that is not usually present in the normal individual. Commonly used as a blood test for the diagnosis of rheumatoid arthritis. Rheumatoid factor is present in about 80% of adults (but a much lower proportion of children).
Rheumatoid factor is also present in patients with other conditions, including other connective tissue diseases (systemic lupus erythematosus), some infectious diseases (infectious hepatitis, syphilis, infectious mononucleosis, parasites, and tuberculosis), liver disease,& sarcoidosis. Can also sometimes be present in normal individuals without diseases. This occurs more frequently in people with family members who have rheumatoid arthritis.

One thing you should do is take calcium supplement, we never have enough in any one day, sure we drink milk and eat cheeze and eat our greens but we never have enough. It will help you feel less bone pain, after you've been taking it for two weeks.

Sevella, will kick in and do it's best after two weeks, so be a little patient. Your'e doctor is going in the right track.

Do you need a rheumy, if you are obliged to see one, than do so, but your'e doctor seem to be handling it well. He's not panicking and is treating you for your fibro, at leas that's has already been diagnosed, as you wait to find out if you have rheumatoid arthritis. Like I said, you could be just a high proteein in your liver that is giving you the high reading, no matter what the outcome is.

Good luck to you do come back, we are all here to give you advice and help you .... afterall we are fibrofriends.

 

momma2zac - December 6

Ive done a lil research about my tailbone pain..that they say is scatica..Ive found Coccgogynia...I have all the symptom..they described my pain to a tee..and It says can be caused from delivery..I have 4 children and I first noticed the pain after my last child..Ive been in terrible pain from it amongst other things..I printed off what I found, I just hope he is not offended I took it upon myself to find the problem..I go tuesday back to the dr..Ive been in extreme pain and the meds I take are causeing me blinding headaches..nothing makes the stop or even let up a bit...Im so glad I found this site..Its so nice to know Im not the only one in this situation

 

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