Second opinion or move on?

I posted maybe a month ago about some left side pain....Chest, jaw, arm, shoulder. This has been going on for almost 6 months. I've had blood work, chest x-rays, EKGs, stress test with echo cardiogram, all of which were normal. My primary sent me to a rheumatologist because he feels strongly that this is fibromyalgia. The rheumatologist said it's possible but he doesn't think so. Along with the left side pain I'm now getting aches in my jaw on the right side and in both elbows. My primary doctor is suggesting a second opinion with another rheumatologist because he disagrees with the first one.

I guess I'm wondering if anyone has/had anything similar to what I'm describing. I keep worrying it's still my heart but my doctor said without any risk factors and the normal results of the tests I had that it's highly unlikely it's heart related plus the fact that it's gone on this long also point away from a heart issue. Any ideas or advice would be appreciated!!

18 Replies

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  • Second opinion always a good thing some rheumo docs have more knowledge than others..Deffo don't think is cardio hun or you would have unstable blood pressure, bloods would show anything going on and if it was suspected you would have been admitted for further tests. Sometimes a neurologist can have the answers they can also diagnose fibro,, maybe you suffer from stress? I clench and bite at night really badly, my dental surgeon has made me a frame to wear when I feel I am clenching and chewing too much. Elbows get Epichondiltis (tennis or golf elbows wether you pay or not) I also have a support that I bought from e bay for this-less than a fiver but very effective, its bone inflammation that causes nerve ends to make pain, the device gently supports the nerves thus stopping pain felt. Go for the second consultation and ask about seeing neuro too.

  • Does your jaw pain occur when chewing? Mine doesn't which seems odd. I do however sometimes notice ridges on the side of my tongue which I read comes from pressing the tongue against the teeth.

  • Chewing food causes my jaw line to ache, at the moment my food goes thru a liquidiser as I have a massive hiatus hernia which prevents food getting into my stomach quickly thus giving off hunger and sugar rushes that make me feel faint and make my heart race. Tongue? look on google at "broken split tongue" I had this badly for several years and my gp gave me folic acid for 3 months-its much better. good luck

  • Hi nukkie ive had the left side chest pain they told me its mix of fibro and gastric hernia same things done bloods ecgs.

    I just went up to hospital got reffered back to rheumatologists.

    Go back to Gp and others professionals. Good luck: )

  • 'Hi nickie420me The main symptoms of Fibro is wide spread pain, this can be on one side of your body. Left or right it can be all below the waist or all above it. Personally for me, mine all started on my left side. It started at bottom of back, Left hip, knee & foot & over the years . Then it went to right side & i had tennis & golfers elbow on right & then back to left shoulder. In fact the rheumatologist was certain that I had Migrating Rheumatoid Arthritis.

    My advise to you would be, if your doctor is wanting another opinion, i would go with it. You have nothing to lose & the sooner you get a diagnosis the better, as then you will get the correct treatment and you can start to understand and manage your symptoms.

    I do wish you well my friend & do pls keep us informed xx

  • I would go second opinion if I was you. Diagnosing fibro can be difficult, as there's no specific test to diagnose the condition and as such people will have their own opinion. Do some research to see what rheumatologists are available to you for referral and if possible get your GP to refer you to one with most expertise in fibro diagnosis. Good luck and take care hun x

  • Thank you so much for all the replies! This is all scary and frustrating. I read about people having the jaw pain but the things I read say it hurts their jaw to chew and I'm not experiencing that. The pains seem to come on randomly out of nowhere!!

  • Hi Nick420 me

    I have the jaw symptoms, I mentioned it to Dr he said it's Fibro, so I mentioned it to dentist, he initially made me a guard to stop me from grinding my teeth when stressed or anxious. I also found out from him that my jaw is out of line and clicks so he has now referred me to a specialist. So often 2nd opinion is good to ask for.

    Hope you get answers soon

    Best wishes

    Carol

  • Does​ your jaw hurt when chewing? I don't have trouble chewing

  • Hi nickie420me

    No it doesn't hurt when chewing and not all the time either. I thought it was sinusitis or neuralgia at first asked Dr twice and he increased gaba p Denton but still didn't seem to help, so read up on it and web advised dentist best person to ask. I am now in waiting list to see specialist, but, dentist did say may not be anything they can do but we'll see.

    Best wishes to you. Hopefully, when I find out what it is, I will remember to advise on here :)

  • Just to add, my p ain in jaw is also on the right and I do have pain in both elbows, which is annoying when in work, I bought sport arm protectors which helped over winter, but will be too hot in summer. I am going to Google e-bay to see about the elbow support which caz-54 mentioned.

    I also get p ain in.left side of ribs at bottom and now also on right side, which Dr advises is Fibro.

    Arms do hurt and feel heavy and shoulders, legs, neck, hips, head, eyes, gums feet, toes, fingers, hands and head hurt (last two fingers on both hands and big toes go numb and cramp and don't touch my trigger points as I will be on the roof! :(:(:(

  • Thank you so much for your detailed replies! I had just assumed if my jaw didn't hurt when chewing that it couldn't be a jaw problem!

  • And I had a massage therapist tell me that I had trigger points in my neck and shoulders so I don't know if that contributes to jaw pain.

  • I wonder? My jaw pain only been in last 4 months and neck pain for years but they could be linked? ?

  • Hi nickie420me

    I am so truly sorry to read this my friend but as Janet28 says, Fibro causes all over pain. However, if you have a second chance with a different Rheumatologist it is always worth taking just in case they have not thought of something? I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Always good idea to get a second opinion if you're not happy with the first. Xx

  • Does the pain worsen after eating certain foods? My mum had similar symptoms and weirdly was gall stones! I get jaw pain and upper shoulder pain when I get bad indigestion as well. Could be worth making a diary to note what food/activity/time of day makes it worse. Hope you get it all sorted soon :)

  • Hi there nickie420me, what a nice handle (name). Have you ever had any eye infections? Swollen glands in your neck and groin? A slight fever that has lasted for weeks especially during the night. Night sweats? Sore throat? Ulcers in the mouth? The pains that you describe going on for some time now could carry on affecting many more parts of your body. Looks like the pain is starting above the waist and running down the center of the body, then manifesting itself in the left hand side.

    All blood work comes back negative. Even negative for RA marker. This makes me think that it could be reactive arthritis. It is caused by a bacterial infection that causes conjunctivitis. It can come and go and affect a different part of the body at each flare up. Occasionally you get a small elevation in your white cell count which is consistent with inflammation somewhere in your body. Sometimes the white cell count has returned to a normal so that the doctor treating you rules infection out. If you do have sore weeping sticky eyes for a few days that is the time that the infection is at its worst. This then causes the arthritis to manifest itself and cause the damage to the joints, cartilage and then the bones. It does not happen all together it starts slowly and does its damage over many years. You only know there is a problem when it starts to ache and the pain feels like a tooth ache. It used to be called (Reiter's syndrome) As I said before it comes and goes when you have an infection and by the time you know that there is something wrong is when you start having the signs and symptoms. If for some reason it is detected early the only antibiotic that will get rid of the infection is Tetracycline. Hope this sets your mind at ease.

    If it was cardiac in any way the ECG and other tests would have detected it. Even a silent heart attack with out pain would have shown up. Good luck and take care Oldman1952.

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