What do Fibromyalgia pains feel like?

[hellothere100]

I'm a 29yo female. I want to find out if i have fibromyalgia and would like to hear someone describe the feeling of the pain that comes with it? I am nervous about asking my doctor that he will think i'm a hypochondriac or brush me off.
I have had chronic, heavy fatigue for the past 8 years or so. Headaches all the time, brain fog and memory problems. I have kind of just assumed that this was just me but it is extremely frustrating. I've never had a diagnosis. People just think i'm lazy and absent minded. I have to push myself through my day, i force myself to exercise 30-60mins per day but it is torture. I also have had depression during this whole time and am currently trying to sort out a medication that works.
I have also had joint pain which i thought was arthritis but my doctor said because there is no visible swelling, it is arthralgia. I have had shooting pains in my ankles / wrists for about the same period of time as the fatigue.
lately, though, my pains have spread through my entire body... its not constant, but comes and goes through the day and is worst morning and night. I often wake int he night and my body is aching. dull aches down my entire legs, sharp pains in my wrists, hands, elbows, knees, ankles, under my feet. I always have very tight, aching neck, shoulders and back but i assumed this was normal also. dull aches in my lower back. i have very weird aches in my shoulders and elbows - eg, if i am lying on my stomach with my arms above my head, i will get excruciating aches in both my shoulders, so that i can barely move them. i have to slowly move them down by my sides and will get instant relief from the pain. i woke up the other night and my elbow was straight, had the same intense pain, slowly moved my elbow to a bent position and again had instant relief from the pain. this happens consistently it's very weird.
I frequently get very frustrated with my physical limitations, normal tasks hurt and takes me a long time to do. often end up crying or getting irritable.
Ok that took a lot longer than i meant it to. Can anyone help?

[ryanshar]

all the same

[TahoeJuls67]

I was just recently diagnosed after about 5 years of experiencing symptoms similar to what you are describing. The symptoms came on gradually, a little ache or pain here and there... a headache, a backache...stiffness in my shoulders. Until gradually, it became constant fatigue through my body, with very deep muscle pain all over. I would have mild fevers, with headaches, and feel like I had the aches of the flu, and ALWAYS so so tired. After talking these symptoms over with several primary care doctors, and going through every lab test imaginable... for everything... anemia, diabetes, lupus, RA, hepatitis, etc. I was finally referred to a rheumatologist, who looked over my history, and all of my labwork. She did the tender-points test, and asked me several questions about other things going on in my body -- things I NEVER would have thought had anything to do with Fibromyalgia.... and she put the puzzle together for me. In fact - I had actually been ignoring many of the signs coming on for close to 10 years... just thinking it was aging, being out of shape - whatever. Even having IBS can be another symptom of Fibro.. I had no idea!
So, as some of the other persons have suggested, keep a good journal of your symptoms... even things you think are insignificant.... and find a doctor who will LISTEN!! Usually its a rheumatologist or a neurologist that will diagnose Fibro. Don't give up!

[Yolzy]

How did your hubby get lyme disease, isnt it from a tick bite?

[breita_k]

I'm here looking for answers, and hope someone can help. I don't have a diagnosis of fibromyalgia, however I do have a host of other symtpoms and most recently my elbows and knees are painful at night time. When I goggled night time knee and elbow pain, it directed me here- it must be fate :) So, I was diagnosed in 2003 with moderate to severe degenerative disc disease in my lower back L5-S1 to be precise, and  Spondylosis and dessiction without any compressions. The diagnosis was preceded by a year of severe unresolved lower back pain that  that led to to sleeping in a lazyboy recliner for 9 months straight. I received physiotherapy, which 'healed it' (and by that I mean brought the pain to a manageable level where I don't need help putting my underwear on anymore and can get my socks on by myself). My back pain requires a huge amount of management- ACCUPUNCTURE, massage therapy, stretching and the use of a hot tub to keep the pain at a manageable level in order to function. I use naproxen or Advil for severe pain, which seems to bother me most at night, then loosens up in the morning. In December - Roughly March 2010 I went through a few month period of extreme fatigue. Though I was emotionally low, I wouldn't say I was depressed, as I have suffered with bouts of depression on and off thoughout my life, beginning as a seasonal depression in my 20's and leading up to a 4 year long struggle in my 30's. I lost weight during this time in 2010 as well, had low energy levels and felt like my brain was under a sheet of fog. My joints and muscles hurt all the time. Blood work revealed elevated ferritin levels and GGT and ALT liver enzymes. Abdominal ultrasound found a 5 cm left ovarian cyst and minor focal fatty infiltrations in my liver. Gall bladder and pancreas were normal. Dr suspected herediatry hemochromatosis but genetic testing came back negative. He recommended blood letting to bring the ferritin level down, and after three months the ferritin was back to normal. The ovarian cysts persisted until this day. I was diagnosed with polycystic ovarian syndrome and was treated with birth control pills to regulate my cycle. Two years, three different birth control pills and a horrible case of mellasma later, I was still throwing ovarian cysts and now had terrible dark patches on my face. I stopped the birth control pills and have not taken any for 2 years. I know I periodically get ovarian cysts as I can feel them when they get greater than 5 cm. which has been confirmed by ultrasound over the years. The left sided cyst will rupture, the right side will cyst then rupture. And this continues. I will take Advil periodically for cyst pain, usually the three or four days when it's over 5 cm in size immediately prior to rupture.  As to the fatty liver the ALT and GGT remain elevated, but not critically high. Prior to 2000 I lived a vegan lifestyle without alcohol consumption and have recently gone back to that diet. Over the years I have found out I have numerous seasonal allergies (all trees, weeds, grasses, furry animals), as well as a gluten and lactose intolerance. Thyroid is normal, as well as vitamin d.  Recently I have been having bouts of very low blood sugar. They are sudden and progress immediately. Blood work shows hyperinsulimia with fasting blood level of 4.5. My family doctor finally has agreed to refer me to an endocrinologist. In the meantime, i am eating every 2 hours to prevent low blood sugar and am again suffering with severe nighttime elbow and knee pain. I am a 40 year old female, non smoker, no alcohol or drug use. We live on a farm and produce our own meat including chicken, beef and pork, as well as our own produce. I make our own bread and home can much of what I can't buy in the grocery store. I think this might be metabolic syndrome or perhaps fibromyalgia. Any thoughts appreciated.

[mrsjt50]

I forgot to add. You could be overdoing your workout. If you are pushing your workout too much, it will increase your pain. Plus, you should only be working out your muscles three days a week, not in consecutive. cardio one day, arobic the next, weight lift the next. you need to allow time for your muscles to heal in between workouts or you will damage them. This goes for anyone, not just FM people..

[mrsjt50]

Hi, I am new here, but have had FM for two years now. Got it right after a car accident. There are many different kinds of Fibro Pains. One I discribe is a tooth ache pain. If you have ever had a really bad tooth ache, just imagine it in your muscle. These are the one's that jump all over the body. They dont last very long, most of the time, but I have had them so bad they made me cry. I rare cases, I have had them in my arms and legs that have lasted over two hours. To me, that is the worse pain from FM. Then the other, The bed pain. I too, wake up and in pain and have to move very slow and the pain goes away. I hardly sleep in my bed anymore. I sleep in my oversized chair and wrap up like a burrito in my electric blanket. Very soothing. If you have a heating pad, this will feel good too. The third pain is the Points. Come to think of it.. there is a fourth pain.. If someone hugs me too tight, or rubs my legs, feet, arms, it hurt bad. Cant explain that pain..I just tell my husband he is being to ruff. Hope this helps. There is also the brain fog, headaches, vision blurr, bladder.. IBS is also what I deal with. Not fun at all. Good luck.. Have the doctor check your Vitamin D and B 12. Ask for referal for RA doctor

[donjoe341]

I hope you look further into what could be causing it. I have lyme disease which is a bacterial infection. Bacterial infections aren't always seen in standard blood work. OI have had this conditions for a long time and it didn't show it's face until a few years ago. It started out with inflammation of the gall bladder and proceeded to fibromyalgia, elevated rheumatoid factor, severe reactive hypoglycemia, low thyroid, and possible insulin resistance. It also has possibly caused me a hormonal imbalance along with adrenal fatigue. It takes a long time to fix any of these things. I have a lot less pain and fatigue  since I have been being treated with oral and i.v. antibiotics. I would look into this as a possibility before taking tons of medication doctors will push on you for your condition. Once on those meds it is difficult to get off and they can cause further problems making it difficult to know if you are suffering from a drug side effect or from a symptom of your illness. I see many people at the lymes doctors office when I get my i.v. and most of them are much worse off then me. They take all kinds of drugs for anxiety, depression, fibro and rheumatoid. I hope you check this out. Good luck

[hellothere100]

sooo went to doc thismorning - he said it's highly likely i have fibro, that he's 90% sure since i have so many of the symptoms, and it's hard to be 100% sure when diagnosing it. so i'll take that as a diagnosis. when he was checking tender points i didn't feel much pain at the points so maybe i have chronic fatigue/ME syndrome?

[hellothere100]

thanks guys i'm finding a whole bunch of symptoms online that i had no idea were associated with fibro, ones i've been ashamed and embarassed about my whole life. eg:
- the urinary frequency / urgency (as i mentioned in my last post - giving birth i felt it all in my bladder, i kept feeling my birthing contractions as an urgency to pee,  it was excruciating)
- weird body temperatures - it's summer over here in nz and even tho it's HOT at nights and i'm sweating, my exposed arms and legs feel freezing and i have to wear long sleeved pjs. i wake up feeling cold if i don't.
- all my life i've had an awful heat rash that appears in certain spots on my body - chest, stomach, upper arms, back, butt. i get it from the shower, or from being nervous / excited, or from drinking alcohol - it's hideous!
- also my whole life i've had weird feet - it's like they have their own thermostats!? when i go to bed, they BURN... it's worst in summer, but even in winter i have to sleep with my feet out of the blankets and sometimes i can get no relief from the heat. even when the rest of my body is cold. i've never met anyone else with this.

sooo i'm going to my doctor tomorrow - i have written a list of symptoms and am gonna ask him if i can find out if i have fibromyalgia. fingers crossed i get somewhere!

thanks for all your comments so far :)

[donjoe341]

I was diagnosed about two years ago with fibromyalgia and an elevated rheumatoid factor. I disregarded my rhuematologists diagnosis and went looking for answers and set up an appt. to see an endocrinologist. My husband and son also went to see this doctor because they were also having similar problems. After all the same testing our doctor told us that something is possibly effecting our thyroid and we all have problems with our blood sugar. My husband is prediabetic, my son and I have insulin resistance. Being prediabetic is also a form of insulin resistance. My husband has hypoglycemia and I have severe reactive hypoglycemia. The endo said that we should see a disease specialist because something like a bacteria is causing this to happen. We decided to see a lyme specialist and she said this was a good place to start. We went to a lyme specialist and he tested us. The tests all came back inconclusive the first time. He put us all on doxy for a month and tested us again. My husbands test came back positive. The doctor put him on I.V. antibiotics. My test and my son's test had no change. Three months after being put on doxy my son still didn't have any change and my test came back 85% positive. I also started I.V. antibiotics and I am finally beginning to feel better. I don't suffer with the severe all over body pain during the day and waking me at night like I used to. I still have pain but it is less severe and improvement is happening just slowly. There are 100's of bacteria that can be causing your condition. If you want to check into lyme I would make sure the doctor is a lyme specialist. If you need help finding one let me know. Chronic lyme is devastating to the body. We know this first hand. You can look at my journal pages and see our journey to finding out what we had. I wish you luck in your journey.

[deadgamegrrl]

Yes, poor sleep and lack of deep sleep is another 'benefit' of fibro, as is depression.  And I also will go days without a whole lot of pain (at least in my mind :-)) and then I'll have a run like I've been on since this time last week where sometimes its hour by hour whether or not I'm going to survive it.

I would go ahead and mention everything you are experiencing to your doctor.  If you don't and you go into a bad flare, it will just take that much longer to get everything sorted out while you are suffering longer.

Take care!  ~~ dgg

[hellothere100]

thanks, and yeah my doctor has done numerous blood tests to test for pretty much everything, it always comes up clear for everything.

@kevieb, that ***** what your doctor said. your pain sounds a lot worse than mine, i can go days without taking analgesics. also i didnt realise fibromyalgia was related to urinary frequency, thats been an issue for me for years!

another major symptom i forgot to mention was my insomnia. my psychiatrist suspects a lot of my symptoms inc depression stem from poor sleep. He just started me on low dose quetiapine, i've been on it 2 nights, it's supposed to promote stage 3 and stage 4 sleep, last 2 nights i've slept striaght through!

i keep doubting myself about fibro, thinking my pain isnt really that bad or maybe its barely there at all? cos ive been having days lately where all i have is my wrist and ankle pains which i'm so used to, i barely even notice. dont think ill bring it up when i see the doctor, but i'm not really sure.... i guess i just want to be diagnosed with it because it would explain so much...

[kevieb]

alot of what you said sounds familiar.  the closest i got for a diagnosis was from a neurologist who told me that i had a "touch" of fibromyalgia-----of course, he didn't even bother to listen to all of my symptoms.  he made a pretty quick decision that i had restless legs and that i was addicted to pain killers.  i was too intimidated to even think---i know what restless legs are because i have gotten them before---a this is definitely not restless legs---besides, you don't get restless legs in your arms and your neck and on the bottoms of your feet and it doesn't make your bladder overly sensitive or your memory disappear etc., etc.,  he didn't even know ho manyh pain meds i was taking when he made his comment about being addicted.  he said some people try to wean off, but that doesn't usually work very well, and some just go cold turkey.   i wasn't about to touch the meds after he said i was addicted---talk about the night from hell!!!  i hurt in places i didn't normally hurt.  my husband finally told me i should take something--but by then the pain was so bad that i had a really hard time getting it back under control and had to take more pain meds than i normally take.  i think i finally fell asleep around 3am in my recliner.
the next day the pharmacist told me you ar not supposed to go off of it like that.  she also told me that they know who has the drug problems and that i was not one of them.    i went to my doc s office and sobbed to the nurse about it and the doc came in and told me that they knew how much i was taking.

lesson learned----don't let a doctor intimidate you and take someone with you for moral support.

[deadgamegrrl]

Hi!

I can't diagnose you but I can say that your symptoms very much fit with fibro.  However, you need to talk to your doctor so that you can be tested for other things that could be causing your symptoms such as thyroid, vit D deficiency, Lyme, autoimmune disorders etc

Fibro is mostly diagnosed when other diseases can be excluded, and through the testing of specific 'tender points' on the body, although there is now some disagreement about this.

I would suggest keeping a journal of all of your symptoms that is as detailed as possible.  That way your doctor will have all the information, and it will help you to keep your thoughts straight too.  If your doctor is not receptive, please find another one that is.  You need to get a proper diagnosis so you can treat whatever it is you have to the best of your ability.

Good luck and please keep us posted.  Feel free to vent here anytime!

~~ dgg