Undiagnosed Symptoms Community
25k Members
Avatar universal

what is this?

I will try to make this as short as possible. I am 33 years old and started having pain 7 years ago. They give me the diagnoses of Fibromyalgia 4 years ago. I have extreme pain all over that is getting alot worse. I am not so convinced fibro is what i have now. Just in the past 3 months here is what i have been experiencing: Pain over entire body! Headaches, Dizziness(Which comes and goes), Eye Infections along with pain (that have been pretty constant)(have to take antibiotics to clear that up only to come right back),light sensitivity(have to wear shades to see well) ear and jaw pain, cervical (neck) pain due to ruptured disc that still has not healed, thoracic spine pain due to bone spurs and lower back pain (have bulging disc) but don't know what causes so much pain, leg pain, severe muscle spasms and muscle weakness over entire body (my muscles feel like they are rolling all the time) Pain in arms,hands, legs,feet,butt,hips,back,shoulders,neck,eyes,jaw, ears. oh, have had chest pains for 4 days. i mean steady sharp pains constantly. they did EKG and x-ray but everything is fine as usual. Referred to heart doctor. Seems to be worse on right side of my body. I have no idea what is wrong with me, but something is wrong. i have done doubted my sanity and landed in a mental hospital twice.I am through with that. i know something is wrong. my husband gets tired of hearing me complain ( i do too) and i quess just doesn't believe me. He thinks i am supposed to work like nothing is wrong. I done construction for 8 years. It slowly got to where i couldn't work anymore. I worked with severe pain until i just couldn't do it anymore. i have trouble just doing housework, i just have to make myself get up and go no matter the pain. It seems no one understands. doctors think your crazy or an addict.I take the least amount of medicine i can and suffer. I take 2 tramadol when i get up and that is usually it until lately. The ruptured disc really put me out of commision so now i usually take the tramadol and a loratab at lunch and one at 5. It still does not get rid of the pain but i don't want to be messed up. i hate the way pain pills make me feel minus taking away the pain. does anyone knows of something that causes all these symptoms? I feel like everything is getting way worse. i have three kids which two are girls. I pray they don't end up with whatever i got. i need an answer.
9 Responses
Avatar universal
Coming from someone who has Fibromyalgia, I think a lot of your symptoms line up with that diagnosis.  I tried Lyrica for mine and developed asthma after a few days on it.  Two and a half years later I still have asthma issues.  It is not easy to do, but you may want to go on a gluten-free, cassein-free (GFCF) diet and see if that helps.  You should give it at least a few months before deciding it is not helping.  Avoiding gluten and cassein seem to help me quite a bit, better than anything else.
875426 tn?1325532016
It sounds like you have more than fibromyalgia going.  A fiibromyalgia not only involves finding the right minimum number or more of positive trigger points but also eliminating other possible sources of your pain.  If they didn't do a thorough evaluation to rule out other sources, even if you have fibromyalgia on top of everything, they should have.   Of course, fibro can tend to attack areas where you've had previous injuries.

RE: muscle weakness-

Have you had any EMG testing of your muscles?  

Have they made sure your potassium level is not too low?  Low potassium can cause muscle weakness and muscle spasms.

RE: jaw pain- It is very possible you have a problem with your jaw joint (TMJ).  This can often come if you clench or grind your teeth at night.  It can also give you headaches.  I wear a hard flat-planed stabilization splint for my TMJ.  I have jaw disc problems and arthritis in my jaws.  The splint helps the headache situation.  I got mine from a maxillofacial specialist.  You can also get pain in your ear from a jaw joint problem.  You might want to get it checked out.  It takes an MRI if you want them to look at the discs.

RE: back pain- if you have nerve damage or encroachment, it can cause big time pain- I have a sibling with nerve damage.  A herniated disc can cause pain.  Bone spurs can cause pain.   So it's not just fibromyalgia.  I saw a video on medhelp about an amazing robotic surgery for backs that is supposed to be so much better for recovery than traditional back surgery- it sounded really interesting.

RE: headaches, dizziness and light sensitivity, and other symptoms- have they ever done an MRI of your brain to look for any abnormal growths, tumors, or evidence of MS?

RE: your tendency toward eye infections: Have they ruled out things that attack your immunity, like CMV?  Have they tested your cortisol levels to make sure those are normal?  Have they made sure you don't have diabetes?  Have they done a complete white blood cell count lately?

RE: Your chest pains- if they have ruled out a heart problem, with blood testing, etc., you might consider whether you might be having esophageal spasms, which can feel like a heart problem.  Have you tried taking simethicone to try to see if it isn't gas causing the pain?  Also, if the pain hurts when you take a deep breath, you might look up costochondritis and see if you think that might be a possibility- this kind of musculoskeletal inflammation can be very painful and often occurs on the left side.  Besides the heart being on the left side, your spleen, stomach and pancreas (behind stomach) are also on the left side.  
Avatar universal
Well lets see. i have had this for 7 years. I have had all kind of test done. x-rays of everything but my head. (Maybe in my head! LOL) I will see about an MRI for that.I have had multiple MRI's of shoulders and back, and recent a mylogram (which is very painful). They found the ruptured disc (cervical), bone spurs (thoracic), and bulging disc (lumbar). My ANA and ESR was high which shows i have inflammation but not lupus or rhematoid. i have high chloresterol and am lipitor for that. I also have osteoarthritis in my hands which they found almost 4 years ago. Been to the eye doctor. i go yearly. just went 2 weeks ago. he said it maybe be allergies,didn't see anything else. i think this is all connected somehow. i don't think I have 10 different things wrong. i do need to get my jaw and ears checked out but as i don't think i grind my teeth. I have ear damage which i believe is due to all the tubes i had in my ears as a child, but maybe something else. I am so tired of doctors and they are probably tired of seeing me. I told them the other day i should just move in LOL! As far as i know, i think they have done all the basic test, at least they should have. I recently started keeping a folder and getting copies of all my test result for everything including disc for the mylogram and x-rays. i am scheduled to go to a heart specialist and a rhematoligist this month. I ahd to look up what an EMG was, i have never had this test done. i will check into it. Thanks! I need to change doctors, but insurance, i don't have a lot of choices. I feel like I have got to figure this out, the doctors have not been alot of help. I appreciate the response. Any other suggestions would be great.
Avatar universal
Hey, i have tried lyrica along with several other anti-depressants and medicine. Anti-depressants only make me feel crazier than what i already am. LOL! i am lactose intolerant so i stay away from dairy. I recently (2-3months) have cut out caffiene except coffee. i try to drink lots of water and fruit juices along with 1 or 2 fruits a day. cut out almost all fried foods awhile back. Changed to splenda in everything and try to stay away from sweets. I will look into this. Anything that might help. The only results that i have gotten is that i don't fell nausea everyday and now rarely seem hungry. I thought it may have been my sugar but was tested for that also, and that was all okay. Thanks for the input. will try
875426 tn?1325532016
My teeth don't bear the worn look of a grinder because I am a clencher myself- have you ever woke up finding your teeth were tightly pressed together?  Do you have an overbite? (We with overbites tend to have more TMJ issues.)  

I had tubes in my ears twice myself.  They put them in due to frequent ear infections in my case to try to widen the ear canals so they would drain better.  I did unfortunately get one bad infection where my ear bled while I had tubes in (very painful).

Regarding 10 different things wrong- you don't want to be hasty in saying that with certainty without getting things ruled out.   Now, let me preface my list with I did go to a rheumatologist who ruled out fibro for me, but have two siblings with that diagnosis.

Let's see- I have
1. GERD,
2. IBS & rectal bleeding problems (and had gotten anemia from that),
3. interstitial cystitis,
4. osteoarthritis of the jaws & a torn disc & disc displacement,
5. pain likely from adhesions from 2 laporotomies, including a complete hysterectomy due to severe endometriosis problems,
6. chronic migraine headaches,
7. a pituitary tumor,
8. osteopenia,
9. postural orthostatic tachycardia syndrome, and
10. left over pain issues from arthroscopic knee surgery, bunionectomy surgery, chin biopsy surgery, a car accident due to an uninsured motorist,

and more.  

So while you may not have 10 different issues, I can tell from your list you have several already identified.  

Neck problems can be a source of headaches as well and you mention a ruptured cervical disc.  Did the doctor suggest it may be a source of headaches for you?  Is there any nerve encroachment in your neck?

It's good you keep your records- do you see where they've ever ordered the blood testing I mentioned?  Some of the things I asked about because of your mention of suffering from frequent eye infections.  Potassium, because of certain symptoms you mentioned.   Also, re: dizziness and headache- low iron can cause these symptoms.  From personal experience, I know you can get symptoms from low iron without your CBC drifting outside normal range.   Have you gotten your ferritin (iron stores) level checked lately?  My doctor says this is the most important indicator.

Do you have a pain management team working for you with your insurance?  Did you find an MRI of the brain in your records?  Fibromyalgia sufferers tend toward having problems with sleep.  Have you ever gotten tested for sleep apnea (so many periods of not breathing while sleeping) to be sure your problems aren't being compounded by stents of insufficient oxygen?  
Avatar universal
hey you have a lot to digest. It's great that someone actually hears me and i can tell you understand pain. I need to go to pain management, i did once and saw the NPractioner there. She wanted me to take 9 more medications than i was already on. None of which was a pain medication. Anti-depressants, anti-inflammatories, and so on. I hate taking medicine. Like I don't feel bad enough already. The side effects are usually worse.
i can no longer work (did construction since i was 22) That means no income. Thank God for my husband, which i wonder when he is going to have enough and leave me. He doesn't understand at the same time I understand his point that i am a huge burden in that area and he needs some relief. Finances are probably the only thing we argue about.He is almost 50 and i believe is going through a mid-life crisis (OMG).
Anyway I am being tested for ankylosing Spondylitis (at my request). The test should be back the beginning of next week. I think iron, potassium, and vitamins have been checked but I will go get a copy of my file and the doctor's office and check it myself. TODAY. Heck I don't really know what all test I have had run over the past several years.I think I need to depend more on myself than the doctors. Most of them act like they just don't care.
The neuro I went to is strange, doesn't hardly talk and when he does he a smart a**. He told me after I had my mylogram (exact words were) your ruptured disc has not healed completely, you have bone spurs and we found nothing in your lower back. Nothing that needs surgery, which he said 3 times. i asked if that was all he found wrong and he said that was all. That was it. The report on the other hand (in my own words) said I had the ruptured disc which is pressing on my spine, bone spur in my thoracic spine which is pressing on my spine also with arthritis, and a bulging disc in my lower back. He was a neurosurgeon. is there a difference between surgeon and nuerologists?
I don't think I grind my teeth. i think that my husband or my five year old daughter who stills sleeps with us would probably notice. (She does not miss much) She lets me know I snore. I'm not so sure about the sleep apnea, lately I have been wondering. Never sleep well, stayed tired all the time.(Had sleep problems since I was real young)

Anyway thanks for the input. You brought my attention to a few thinks. I will check my file and if those test you mentioned haven't been done lately, I will get them to check. i think I will go ahead and get a referral to the pain clinic too. They just opened one up close to me. Before I had to drive an hour and half to get to one.

Top General Health Answerers
363281 tn?1518219421
Nelson, New Zealand
1756321 tn?1547098925
Queensland, Australia
19694731 tn?1482853437
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
In this unique and fascinating report from Missouri Medicine, world-renowned expert Dr. Raymond Moody examines what really happens when we almost die.
Think a loved one may be experiencing hearing loss? Here are five warning signs to watch for.
When it comes to your health, timing is everything
We’ve got a crash course on metabolism basics.
Learn what you can do to avoid ski injury and other common winter sports injury.
Here are the pros and cons of the top fad diets and weight loss plans of the year.