What were the first 5 major symptoms you noticed the most when you were diagnosed

I was in a car accident- in traction, had whiplash, herniated discs, muscle strains, stabbing pain, trigger points, inability to stay asleep. I went to most of the hospitals in Boston begging for help. I believe one prominent orthopedist could have diagnosed me if he had not been so dismissive of the condition. He dedicated 3 pages to it in his book and added "it is not a big thing - just have a glass of wine or two." Of course the next time I saw a writer write anything that resembled that stupid comment I wrote to the editor and told them what I thought of their book. They apologized and promised me they would re- write the book. I was diagnosed 6 years later by a general GP.

pain, exhaustion, lack of balance, tight muscles, and brain fog

Terrible, awful pain in my SI joint that never went away, along with burning pain down my left buttock that also never went away. Burning pain in both elbows. Same type of burning pain in my knees. Depression.

Hey Dozer, I live in the same area as you! I had lived below Framingham for awhile and the doctors there were terrible. One, who knew how terrible my back pain was, had a fit about the idea of my not going back to work. Another did as well and didn't offer any diagnosis, nor did she tell me what her test results were. She only tried to sell me on using her for accupuncture, riiiiiiiiight.

Neither one of them bothered to figure out what was wrong and I knew I felt like I couldn't keep on like this anymore. It wasn't until I moved to the Greater Boston area that i got a great GP who figured it out almost immediately.

I'm surprised that Boston-area doctors were so obtuse about your diagnosis. That stinks!!!! I mean the Boston hospitals have some of the greatest minds in the world, and the best they could do was recommend a glass or two of wine a night??? Wow. Eye opening.

And if you need a good orthopedist, I can recommend one to you, although he practices in the Greater Boston area.

Isn't that "squeezed chest" short of breath feeling creepy? I honestly can't think of another word for it. It's so different than any other fibro pain. It feels like someone tackled me to the floor in football, falling ontop of me and squishing all of the air out. I'm honestly glad you've mentioned it as SK is the only other person I know who's experienced it, as far as I know.

And the knots in the back? Terrible! Worst pain of all, so far. I'm sorry that you have them too. in fact, most fibro people with whom I've spoken have them. For some reason, I always think that's pertinent to our fibro causation.

Pain, nerve, joint. bone

Fatigue, always present

Problems with sleep, getting to sleep, staying asleep

Flu/hangover type feeling


Hey dozer! Thanks for adding a photo! Gee, it's difficult to only choose 5, and at this moment, I think these are the ones I want on the list!

Hope that you are as well as you can be!


Constant Fatigue

Widespread Pain


Loss of Balance

Brain Fog

I was a sophomore in high school :/

Hi Petunia,

I have my options for orthos. We have neurosurgeons and orthos in Foxboroat the patriots place. I think they are on site for the football players. They are Brigham and Women's but i have also considered orthos in Boston. For consulting I would just hop on the train.I wish I could find that book because I would quote other passages from that book. He was the one I consulted with about a surgery earlier that year. That was back in 1991.

Well the cause of it is a real mystery.Then it goes away the next day.

Thanks SK,

I am so relieved that I am not suffering from intense back pain today. The good thing is I feel well rested. The only problem, and I am not complaining, is mild pain in my knees and stiff hands. We have rainy weather today. As long as distraction works I don't mind and I can be active. Maybe it is not so bad because I took Advil and Ultram at it's onset.

Hi dozer I have lupus and arthritis to so some go with all things but what sent me to the doctor the first time was

chronic fatigue

aching {like flu}

low grade fever


I was always pulling a muscle or twisting something from falls {broke my arm twice in a year}

Thank you Kholmes, Purplebutterfly, and Somehearts for your answers. This whole sleep thing is driving me insane. That is what I would like researchers to solve. It seems as though sometimes if I am able to sleep in a little in the morning I can reduce the pain. Nights are terrible -the constant waking

For me definitely pain all over

crippling fatigue

cannot get to sleep

feeling like I have the flu all the time , comes and goes when it wants to

cognitive difficulties

Thank you Tina. I had 2 incidents that triggered it. I got chicken pox at age 17 and the exhaustion and pain all over were the most noticeable. Then when I was 20 I got into a terrible car accident and had whiplash. The onset of symptoms cascaded almost over night.

I think the things that got me going to the doctor - the second time - was:

trouble walking

random balance issues

major fatigue

sharp lightening like pain in my head and/or what would be brain fog though I didn't know it at the time

I did have pain elsewhere in my body and had to remind myself to tell the doctor the tender points hurt - I'd kept my mouth shut for so long, because I'd been repeatedly told the whole mess was all in my head and I needed to just knock it off. If it wasn't making me scream I'd not said anything - tried to just ignore it myself - made me feel so pathetic to admit that yeah that slight pressure actually hurts... now most of them that slight pressure hurts like hell. Seems the older I get the more pain I'm in and the harder it is to manage. Blah! The "trigger" was a car accident where I got bad whiplash. Though, I think I've shown some symptoms/hints as far back as a childhood to this and CFS. And of course the list of symptoms has grown and grown - to many associated conditions to mention - it's ridiculous, but such is life. LOL

Hope you're all fairing well this week!! *Hugs*

After my Bell’s palsy paralysis went away:
Horrible pain in neck and shoulders
Ear pain/issues

Hi Suzanne,

Yes, now I remember that really was the first sensation I had. I am doing art work and this is a theme. I tried to upload some but I am having technical difficulties. I have one painting of a woman carrying a bag of rocks

. Does anyone get the sensation of having their joints squeezed? Sometimes it feels like someone has tied a cloth around my elbows and ankles and they are tightening on me.

Hi Butterflydragon,

I think aging does not help. This fall has been the worst for me in so many years. I am getting closer to 50 but sometimes I feel like I am 70. Like you, mine started with whiplash. I went to a neurologist last week and he prescribed neurontin for me but I think it takes a week or more to kick in. I am guessing..

Hi Loveftt,

I want to do some more art work and I would love to hear what the suffering could be compared to. My understanding is that it can be different for people. I see these medical books that have little dots for the tender points but they do not have any images of the wrenching pain we experience on our muscles and tendons. The last few days it has been around the clock.

Hi everyone! Great post! I agree hard to choose only 5 .. but here are my top 5 ( I think)

  1. Brain Fog
  2. Random Pains that can come and go anywhere in my body--sometimes achy, sometimes like a knife stabbing me
  3. Vertigo--unbalance, faintness
  4. SEVERE lack of energy and interests
  5. Toss up between vision changes and mood swings :(