Hi, I'm new to the board, I have Sjogren's and now rheumie doc is thinking fibro also and after reading, I think he is right. I went to a neurologist yesterday to rule out the big bads just for reassurance. My daughter had seen her so I thought she would be good for me but it ends up she is one of those docs that calls fibro a wastebasket diagnosis. My neuro exam in the office was normal and she did not think I had any neuro diseases and didn't think I'd gain anything by having an MRI. After thinking about the visit, I got so depressed, so angry, so thankful to have a rheumie and a primary doc that don't discount my symptoms and throw me in the wastebasket!
I wonder if most people have gotten MRI's of the brain during workup? I may ask my rheumie to order one. And if I need a neurologist, it won't be that one, and I'll do research to test their attitudes towards fibro.
So is there value in MRI, will you see the loss of gray matter from fibro possibly?
Welcome to the board lcm. I'm so sorry for what you've been through and for the frightful diagnoses you've received--Sjogren's and fm. Is Sjogren's like lupus, only named differently because it always causes trouble in the mouth and eyes first? It sounds so much like lupus. Some docs steer completely away from the fm diagnosis partly because insurance companies can use the diagnosis against you. It does hurt to not to be validated, but it also hurts to have all the misery of fm assumed in one person and a whole host of "preexisting conditions" against you. Glojer on here just reported she nows has to pay a $100/month more in insurance because of the diagnosis. Some of the docs might actually be trying to look out for you, but some are just such apathetic, deaf losers as well.
FM was speculated first by a nurse practitioner in my doctor's office, after 10 years of that doctor seemingly so unconcerned about all these things that were dragging me at one time. I felt like the little whiner around him. The NP sent me to a pain specialist and rheumy for further evaluation. The PS pressed the infamous tender points and declared I definitely had it. I went on Lyrica and was doing much better by the time I got to the rheumy. He did a bunch of tests (no MRI) and called it FM as well. So I did not have an MRI for the diagnosis if that helps you any.
sjogren's in most people is just the dry eye, dry mouth thing (there go your teeth), but it can be systemic and often with other immune conditions, like FM. I think my more systemic symptoms are the FM thing. It really disables me and that is why I want the diagnoses, if I can't work in the future, I will need to be abe to collect some disability. I am fortunate that while I work I have good insurance without the worry of the diagnosis making it more expensive. But I do have the pressure of the fibrofog making me unable to meet productivity numbers. Fortunately, I am able to work at home and that helps me focus- I was so distracted at work. I hope to try some new meds and get some energy back. We will see. Anyway, it's good to have lots of documentation over time if you have a condition that will result eventually in disability and loss of earning power. My opinion. thanks
I have a Rheumy who tells me I have Fibro and a Neurologist who says its all in my head. After a positive lumbar puncture and one brainstem lesion, the neuro clearly states there is nothing wrong and maybe I should try and think myself well.
At least my Rheumy is taking me seriously as far as the pain is concerned, and has suggested different meds to try and help with the pain. My GP thank goodness believes my pain to.
How could I make a brainstem lesion up, that clearly shows on the scan, (he said its a spot!) and I certainly could not magically create O bands in my spinal fluid.
If anyone needs their head testing its the neuro.........I have no faith anymore.
I've taken a lot of things over the years lcm, but Lyrica was just amazing for helping with the fibro fog. When my brain quit functioning normally, I was a type A, thousand-things-a-minute person. I wasn't the type that needed calendars. I could juggle so much well. I had a car accident, my mom (favorite person in the world) was diagnosed with cancer, my dad died of heartbreak of learning of my mom's disease, I provided round the clock care for my mom while I had little ones and debilitating pain from the accident, I had major surgery to fix the accident, and I had to let go of my 11-year old business because I just couldn't do it all. No disability there--I thought I was going through a temporary thing and had no idea what was to follow
For me, the fibro fog happened overnight during that stressful and physically painful period. I'd forget appointments, ask the same questions over and over, and literally felt I was in a fog of fatigue as well. My doctor repeatedly discounted the cognitive problems, and it was just so frightening. 8 years later, I was given Lyrica and called every doctor responsible for getting the medicine to tell them how amazed I was. TMJ, morning headaches, acid reflux, getting up to urinate, sleep disturbances, lack of libido--all of it improved after I got over the initial week of tiredness that comes with first trying Lyrica. But the most amazing thing was having my mind back. I felt employable again. I couldn't continue with Lyrica because of constipation so horrible it became dangerous, but a lot of people have done well with it. Lyrica might help you meet the production deadlines. I'd read about all the different symptoms of FM and sometimes wonder if any disorder could involve so much, until I took Lyrica. Unbelievable, especially when some docs still act like we're whiners.
Tinkertot, I can't believe some doctors and your neuro sounds like lcm's doc. When I had my accident, two surgeons said I'd be paralyzed if I just slipped, that the discs were resting against the spinal cord. One doc got so mad I didn't tell him he was my second opinion that he wrote up in his report that I was looking for insurance money. I went to my pcp and he said, with much anticipation, so what did you think about this guy's report, like he gave it so much weight. I nearly fell to pieces on the inside, but I pulled out the mri picture the other surgeons discussed with me and I said, well, you know, if this guy is right, then could you refer me to a psychologist because I am one messed up person if I am making all of this up. But before you do that, could you look at this image and tell me what YOU think. He ate some crow and said, my gosh, you are way too young to have your neck look like this, and you are going to have to have surgery. The other surgeons are right. Some people just use their power to hurt. I have no idea why.
My mom has the sjogrens, RA, diabetes and Fibro. Of all those, sjogrens is the worst for her. Her tongue is a deep RED color, she has absolutely no moisture, and her throat almost shuts down at night due to this, she is on medication, but this is the
3rd one shes trying so praying it will work. Shes had a MRI as well, due to her diabetes, little veins deep deep in her brain show up as being closed,, thus making her alzheimers worse. We've got her so many things for the sjogrens, gliserin sticks, mouthwashes especially made for that, other stuff. Her eyes dont produce tears , so they feel gritty like sand in them, so artificial tears. Her eyes have shown a slight improvement, but her mouth, lips, lack of saliva, throat havent. It is one disease that is straight from hell i think. Its making her life miserable. Do you have any advice on what you do for your sjogrens? something that might be working for you?
over the past 5 years i have had 6 mri's of my brain, with and without contrast, they all come back normal. imagine, me with a normal brain? giggle.
ps. oh, and 4 ct scans with and without contrast, normal.
Last edited by bluelakelady; 03-03-2010 at 09:55 AM.
Reason: add post script
I've had headaches daily for years. They recently started getting worse. Plus, my neck, back, hips, and legs hurt, chronic constipation, tmj, and the list goes on and on.My GP sent me to a neurologist because he said I needed more than he could offer. He didn't believe it was migraines because the migraine meds I was on didn't help me. He did mention Fibro. I started looking it up that evening because I really wasn't sure what it was. I was amazed at how many of the symptoms I have! I go to the Neuro the next day to be told that I had insomnia and that all my aches and pains will go away when I get some good sleep. WHAT???? She said Fibro is a dx given when they can't find anything else wrong.
I get pretty decent sleep. Usually around 8 hours. The reason I'm not getting quality sleep is because of the pain. I'm on trazadone and mirapex plus 10mg of melatonin and I'm still waking up in pain!
I had a CT and blood work done today, so we'll see. If she continues to tell me that I just need to sleep, I may scream. I'm afraid of not getting a diagnosis of something. Not that I want something to be wrong, but I know my body and I know something is not right.
Ldisney, on the constipation, sleep and RLS/parkinson problems (is that why you are taking mirapex?), PLEASE PLEASE PLEASE do yourself a favor and try water-soluble magnesium; I use one called calm put out by natural vitality. Water soluble as in it is a powder you mix with hot water--tastes pleasant and within one day the constipation will be remarkably better. It helps with all three issues, plus some sources say it helps with allergies/rhinitis (something about histamines), and TMJ. (My father-in-law had RLS and what a cruel tormenter that stuff is.) There are studies that link leg pain and jumpy legs to lack of magnesium. Most Americans don't get enough magnesium in their diet. I had read this stuff a long time ago and took the local drugstore's magnesium supplement--it was useless compared to the water soluble stuff. Hands down, no comparison.
PLEASE also get your Vitamin D specifically checked. A deficiency in Vitamin D can cause cognitive and memory problems as well as chronic pain. AND vitamin d deficiency has been linked with parkinsons. I've been with my doctor for over 10 years and just had the Vitamin D checked and was deficient; I've been on 50,000IU D3 every since.
If a month of serious supplements don't help, I hope you will study up on Lyrica and get to a pain specialist. A pain specialist can do the check on the trigger point areas (the originator of that test no longer likes his own test, but I think they are still using it as one of the quickest way to see if FM meds are for you). I could not believe how overnight Lyrica helped so much of the stuff you mentioned.
I usually post on the CP forum..but I was diagnosed with FM back in '95....just wanted to add that I totally agree with Baserockermom...I just started the exact same magnesium supplement about 2 weeks ago..it works wonderfully for my constipation because of the pain medicine I am on...I was taking Miralax but hated adding another 'chemical'..so this is a much better option all natural...I got the lemon/citrus flavor..and it completely dissolves in the water!
I also have to take an all natural Senna tablet every few nights...and found a wonderful one by swiss kriss brand sold at whole foods...(are we allowed to name a store or brand?)..if not..I apologize...don't work for them or anything...LOL
And for me...I have to say that Ambien has been my 'miracle' drug...Ever since I was a teen...eons ago..haha...I would sleep sometimes 10 or more hours but never felt rested...along with all the other symptoms of FM..fatigue was the worst thing for me..
But a few years ago..after my 3rd cervical fusion..I was prescribed Ambien to help sleep with my pain..and after a week..I felt more rested than I had in 25 years!!! It was absolutely incredible to me...I was never getting to stage 4 sleep!
Now I sleep a perfect 8 hours every night..I also try to go to sleep/wake at exact same time each night/day even on weekends which helps too..
Even though I still have daily pain..I think that sleep is one of the most crucial issues we face and helps in ever aspect of my life from concentration..to dealing with my pain..I get sick less often because my immune system gets its 'repair' each night, etc..
So those who are not on any type of sleep medicine with FM..I would speak to your Dr. about this as my Rheumy who is now head of the countries best FM/Chronic Fatigue centers thinks this is the largest piece of the puzzle for us who suffer..
you're going to make me cry. Ambien is a great med. I recently had a bad injury and then major surgery. I can't take pain meds, so I used ambien round the clock until the prescription ran out. I've got an appt with my doc to see about having that prescription on hand for any time pain gets beyond the sleep I get with magnesium. Have you had any side affects with ambien? Is it safe for long-term use?
You are so right about sleep. It is so essential and has to be responsible for at least half the problems of FM, especially for the flareups of pain that just feels like cement has been poured into you, setting up pain everywhere.
If magnesium alone won't do it, get senna s from kroger ($4, cheapest I can find). My pain specialist told me to take senna s after a three month bout with severe constipation. It wasn't enough to break through the problem, but after magnesium set me right, I continued on the senna s. Don't mess with constipation. A lot of harm can come from just letting waste sit in you. All my life, it was normal for me to go days between bowel movements. With magnesium/senna s, I go every day. I don't think it is ever normal to have waste sit.
Last edited by Administrator; 05-31-2011 at 03:30 PM.
The only side effects I have with the Ambien was in the hour after taking it at night...right before I fell asleep...I would go into the kitchen and fix something to eat...the strangest combo of things!!! I have since learned that this is a side effect they quickly mention in the commercial...LOL...so actually gained 10 pounds the first months I took it and had NO clue I was doing this at night until I would see the dishes in the sink...
So my trick now is to shut my bedroom door after I take it and put a sticky note on it saying...YOU ARE NOT HUNGRY YOU DORK!!! And haven't had this problem anymore and back to my regular weight
I know that for some people..they can actually leave the house or do something like leave the stove on..have someone you live with keep an eye on you when you first take it...or if people live alone...it's important to just take it right before bed and stay put...
I take the 10mg each night and that works wonders for me..I have been on it for over 2 years now..
And I totally agree that having regular bowel movements really keeps the toxins out of our body..I think my system uses the magnesium to make things..um...softer so to speak..and the senna makes my bowels move...so that is why I take both...
But since they are natural..I don't get the cramps or yucky side effects from 'medicines' used for that...
Will say some prayers for those with FM pain/fatigue as I know it can be such a roller coaster each day and not being able to 'prepare' or know when those flares hit..can take an emotional toll as well..