I need your input, I am getting mixed reviews regarding no pain or very little pain and fibromyalgia. Can fibromyalgia occur without pain?
My current episode of symptoms started the beginning of April: severe muscle fatigue, imbalance, walking difficulties, and general fatigue (although that has been getting better). I have a little stiffness once in a while and sometimes muscle spasms. I have no pain most days or very very little pain on the other days. I even had a tender point exam in June, no pain at all and it wasn't even uncomfortable. When I was diagnosed in 2004 I cringed with pain for 16 out of 18 tender points. I do have other fibromyalgia symptoms such as brain fog.
Severe muscle fatigue is the worst symptom, it sets in after 20 minutes of walking, I start to get shaky and I need my hands to hold onto the counter in the kitchen for support, and sometimes I zigzag back and forth. It affects my small motor skills, too. I have difficulty using knives and things as well when the muscle fatigue sets in. Going grocery shopping and standing and reaching for items, even with a motorized cart does me in as well. By the time I am in the checkouts, I cannot lift items to put on the register, and I can hardly walk to the car clinging to the grocery cart. Then I am wiped out for the rest of the day.
I was in the diagnosis process again this spring, my primary was 100% sure I had MS. Neurology said I don't have MS, saw Rheumatology, and she said the only thing was a positive ANA, otherwise it is a bad fibromyalgia flair. She said flairs sometimes get worse as we get older, but it doesn't make sense because of no pain.
Do you think this is fibromyalgia without the pain? Any thoughts would be greatly appreciated.
TERI, I’m not sure I can add much to help you figure this out, but I will say that 2.5 years ago when I first started having symptoms it was all muscle weakness & fatigue… As a matter of fact when I was told fibro, over and over I just kept arguing with them that I wasn’t in pain & I had muscle weakness & fatigue, almost the same as you describe when going to the grocery store. But progressively as time went on my muscle weakness turned to tenderness and now if you push on my muscles just about anywhere on my body , they hurt. As a result i have become less active and thus back pain, stiffness and morning misery. But initially and even today my biggest complaint is muscle weakness and fatigue. It has gotten better with certain treatments and supplements. Magnesium has made a big difference & no sugar diet, when I eat to much sugar my muscles are more tender and fatigued.
I hope you feel better & that they can rule out MS for good !!
That is a little confusing to me as I’m not sure. If you didn’t have the high scoring tender point exam before it would sound like chronic fatigue syndrome. However I am not a doctor nor knowing about illnesses other than CFS and fibro.
Hopefully some others on here will see your post and give you more idea about it. What did the rheumatologist say after this exam? Could you have gotten better in some way?
I’m sorry I’m not much help. Good luck and let us know how you get on
Hi teri, after reading your list of symptoms it sounds to me like it might be Chronic Fatigue Immune Dysfunction Syndrome.Might be good if you can get to a CDIFS( CFS) specialist. I wish you the best and I am sending you loving, healing prayers,
Hi Teri. I just joined the group today. I've had CFS for 30 years and fibromyalgia for 27 years.
Since your neurologist has already ruled out MS, it's very possible that you have both CFS and fibromyalgia like me. I've always had both symptoms of pain and fatigue, but it is possible for the fatigue to be worse at times and the pain to be worse at other times.
Check out the website for the CFIDS Association of America:
Taking my nap now! I'll be back tomorrow to get to know everyone here.
Hi Teri - I have been on this same merry-go-round. I was first diagnosed with CFS and didn't have much pain - just extreme fatigue, muscle spasms and fatigue along with swollen lymph nodes, etc. About a year later I was diagnosed with Fibro when I started having extreme pain without explanation. Several times over the years I have been told that it was more like MS but the neuro doctors always say it's not. It is so frustrating. I am at a stage some 20 years later where pain is no longer my #1 symptom. It is still here but nothing like it was and it is at it's worst when I over do. Muscle fatigue, extreme fatigue and cognitive dysfunction are most troubling for me along with unresolved sleep issues. I wrote a blog about this very subject once - we all have the need to have this wrapped up into one package that we can negotiate but that never seems to come. Sending big hugs and hopes for some resolution for you!!!
When I was first went to the doctor the fatigue was the worst. I had the tender points also but they were not as bad as now. I actually went thru a 3 year period that I was just tired and did not have a lot of pain.
Thank you, dee B, so maybe it is fibro. 90% of the time I think it is only fibro, but 10% of the time I think it is something else. The thing is the doctors don't even have the same answer, saw my sleep dr. today, and he said it is not fibro, you need to get a second opinion.
Thank you for the input, and good luck to you.
The rheumatologist didnt say anything about no pain with the pressure points. Just that she didn't see anything that would be anything else at this point, and it is just a bad flair of fibro. I think the pain is better because I am sleeping better, because my RLS and sleep apnea is treated.
That you for the information and the link. I will check it out.
Thank you Linnie for your support. It would be nice if they can figure it out. I saw my sleep Dr. today, who I have known for a very long time, and he said it is not fibro. and that I need to get another opinion.
Thank you crynsugar,
alot of good information in this.
Thank you, most times I think it is just fibro., but sometimes I think it is something else.
That’s good. Better quality of sleep us always a bonus. Glad to hear it.
Thank you, it is nice to know I am not in this boat by myself. I have those tremors too, where you feel like your body is doing this shakes, but you can't see it, and I asked my husband if he could feel it and he couldn't, and it is so bad I can't fall asleep. I have had problems with saying the wrong words, too. It is bad enough that we are dealing with this disease, but it is worse that the doctors do not know what is going on and don't know much about how to help.
So here is and update. My sleep physician said it isn't just fibromyalgia, he said it is something else, and I should follow up with Rheumatology and Neurology, or get a second opinion. I sent a message to my primary to get her input, and this is her response:
As you know, MS can take years to "show up" on testing. That said, you DO NOT have that diagnosis presently.
There is no test for fibromyalgia, it is a clinical diagnosis based on "trigger points" on exam among other things. You DO fit the criteria for this diagnosis. Then she went on to say if I am still having symptoms in a year another consult would be a good idea at that time.
So NOW WHAT, both of these physicians are the best physicians I have had, and I trust both of them, and they are both saying different things. UGH