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how long until you got diagnosed?
8 Replies
dannape - October 9

Hi everyone, I'm so blessed to have found this forum.
I'm 46, and have been fatigued for quite a long time. I sleep all the time, on my lunch, when i get home, then i get up and go to bed and sleep all night, then wake up like i haven't slept at all.

the past few months, there isn't a place on my body that doesn't hurt. My back and shoulders, my neck hurts just to touch it, my arms feel like they weigh 50 lbs, my legs are just throbbing, all the way to my feet, where it actually hurts to walk. I've been to numerous drs. all they've found so far is a bulging disk lower back L4 L5, bulging disk in my neck.

This new dr is suspecting fms, and i have an appt at a sleep clinic in a couple weeks, I will assume that is just another part in diagnosing it.

I have heard it can take an avg of 5 yrs to get an accurate diagnosis, and i was wondering how long it took for you all to get diagnosed? do my symptoms sound like fms?

Thank you in advance for any input at all.



trans - October 10

Hi Peggy, I am so sorry you are going through all this to get a definitive diagnosis. Sleep Apena could be another reason you are tired, it is a symp.
I sleep with mask for sleep apnea and take a med that is mainly used for narcoleptics, provigial. I call it my energy pill, without that, I would not be able to function at all. My doc kinda specializes with FMS and MS, she has me on 3 meds and that helps me in my daily battle with fibro, I am always searching for new things to help me. I will not give into this monster. I am 57 and feel like 100 most days but I have to keep on movin because I don't have a choice. God Bless,


ibritz - October 10

I had symptoms for many years. My first visit to the rheumatologist, I was diagnosed. Talk about a weight off my shoulders. I was already on a c=pap machine, sleeping pills and vicodin. I primarily saw him for all my arthritis, but before I left the office he said, wait a minute, checked the pressure points and I had 10 of 11. Just having a name for what is wrong is soooo relieving.


Gabbie - October 10

I think I started with fibro many years ago, but because the symptoms were different and came and went, I blamed it on other things. It wasn't until the symptoms starting coming on more often and at the same time, that I made an appointment with a rheumatologist. I had extensive blood testing, pressure points, etc ,which was done right from the beginning and the doctor diagnosed me within the first 3 visits. I think it's really important to seek out a rheumatologist who believes in and treats fibro. I encourage you to stay with this forum because it really helps to share with people that understand. I wish you well.


Donna m - October 10

Hi Peggy,I'm 44 yrs. old.I have been dealing with this for yrs. as well. I found out about this site on another site. A site for (cll) Chronic Lymphocytic Leukemia.I have cll Dx. in June. I was asking if anyone has leg pain (at the time it was my legs).Someone else with cll also has
fibromyalgia.Her doctor told her, the two go hand & hand.I don't see anything that says that,but I did look into it.I found I have alot of the symptoms.I have pain all the time. Sometimes it's bad,sometimes not as bad.The pain seems to move around,feet,legs,hips,back,knees,neck, wrists,elbows...I'm sure you get the point.Just recently (a few months) I started having trouble sleeping. Between going to the bathroom a few times a night, or pain or sweating. So I don't get much sleep these days.I'm
tired all the time.Even after a little nap. I have some other symptoms as well.
I went to my pcp yesterday.I went over EVERYTHING ,he says it's fibro.He gave me Lynica. I hope it helps.I wasn't expecting to be diagnosed so fast.But he knows its been going on for yrs.Good luck to you!


Fantod - October 11

You need to see arheumotologist to get a firm diagnoisis of fibromyalgia (FMS). Go to the National Fibromyalgia Association website and ask them for a couple of referrals in your area to a fibro friendly doctor. Assuming you have had a complete work up and physical exam lately not much else is needed. But, finding a physician who acknowledges that FMS exists is usually the hold up for most folks getting a diagnosis. Not all rheumotologists are created equeal when it comes to FMS. Take some time to read through the information and posts on this site. There is a lot of good information available. It does sound like you may have FMS but you need to go to a rheumotologist for a firm diagnosis. Once you have that you may also want to consider a pain specialist as part of your "team" to treat this problem. Take care and let us know how you are doing.


dannape - October 14

Thank you all for your input and suggestions. i am really looking forward to the consult with the sleep clinic, to get their input. Right now, i'm taking tramadol (50 mg), they started me on that awhile back when they found the bulging disk in the lumbar spine. my joints hurt so bad during the day, that i have just started taking one mid-morning, and then one at night to calm the aching down so i can sleep. if i forget to take the daily one, by the end of the day it just hurts so bad to walk. But I'm worried, cause i've read where people get addicted to these, and i do NOT want that to happen. When i re-filled the prescription, the pharmacist actually talked to me, and said not to take more than 8/day, and i was like "good lord, i take two a day and that's it." i don't think i could navigate if i took that many. But my fear is, after awhile it will take more and more to alleviate the pain.
What kind of meds are you guys on?


Fantod - October 14

I take Gabapentin for sleep, Cymbalta for pain, & gabapentin for nerve pain. I have degenerative disc disease so I also use Flector Pain patches which are topical and do not get into your bloodstream. There are not many medications that actually work to control FMS symptoms. Most of them are actually antidepressants that are used in low doses. I think a pain specialist in addition to a good rheumotologist is key to your complex health issues,. Mine works in tandem with the rest of the team so I get the maximum benefit. Take care.


dannape - October 27

Well, i had my consult with the sleep clinic on friday, and i go back for a study on nov 10th and 11th. i will stay all night on the 10th, and then i have to stay all day on the 11th, to monitor why i'm sleepy all day. if they find any breathing issues, i will have to come back for a 2nd night with the breathing machine. So, at least i'm one step closer to figuring out what is going on.



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