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Fibromyalgia or something else?


I haven't had a single diagnosis for my pain. I'd say it started late 2017 with mild discomfort around my right upper abdomen/rib cage. It eventually developed in sharp, quick pains that seemed to always change location, mostly it stayed on my right side, but on different days it could be on upper, middle or lower abdomen. My right flank (rib cage I suppose) would hurt sometimes when I twisted my torso. I went to the doctors in 2018, they did all the bloodwork, fecal tests, physical tests and abdominal ultrasound of all my organs. All normal! I was prescribed D-vitamin course for a slightly low d-vitamin values. After a ~5 months of pain, it suddenly dissapeared. I had no pain for 10 months straight.

Now in 2019, I've had a solid 6-7 months of pain once again. Last week I had my bloodwork done and once again all normal. Also I had my thoracic spinal area xrayed and it was also normal. The pain that I've experienced lately is way more versatile than before; I now have sharp pains all over my upper body, and sometimes even in the legs and arms. It's like all of my rib cage is hurting, lying in some positions seem impossible due pain. My lower posterior ribs are very sore to the touch. Also points in my upper back, next to the shoulder blade are sore when lightly massaged. Sometimes the pain is experienced on the lower right front ribs, and this pain seems to radiate all over my abdomen. It feels like it's not a 'deep' pain, but rather superficial. And just by changing position, I can often make the pain go away momentarily.

Also my neck hurts often and the pain is no longer only on the right side, left sided upper back pain is also present at times. Other constant symptoms are these intense episodes of fatigue when I feel like I could fall asleep on my feet, but when I try to sleep, I can't. I get constant chills, like I'd be very cold for a moment (no fever during all of this). On some days I get headaches that will last for the whole day. I also get random muscle twitches all over my body and these can occur 20-30 times a day. Often I feel disoriented, foggy and get random dizzy spells.

My doctor says its unlikely to be a internal organ related disease, as all my blood work is fine; no infection, no evidence of gallbladder or liver dysfuntion according to the specific blood tests, ultrasound and xray. He has now reffered me to physical therapy (for which there is months worth of waiting in line).

I'm very anxious these days. I need to know what all of this is. Is it something chronic but not life threatning, or is it something more severe. From you guys I'd like to know if these symtoms relate to any of the Fibromyalgia symptoms you're experiencing? My doc hasn't even mentioned said syndrome. I just keep coming back to that conclusion since my symptoms are so all over the place.

Thank you in advance!

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Comments

  • Welcome nosso88 we’re glad you’re here!

    While you’re waiting for a reply to your first post, please take a few moments to review the Code of Conduct and FAQ section, located under Forum Tools. There you will find important information about posting in the forum and helpful tips for new members.

    You might want to check out the Fibromyalgia Health Center on Arthritis-health. It has a number of great articles and videos that you might find helpful, including How to Get a Fibromyalgia DiagnosisFoods to Avoid with Fibromyalgia, and How to Create a Fibromyalgia-Friendly Diet. I hope you find these resources helpful. 

    Again, welcome to the Veritas Health Forum.

    Chip 

    Veritas Health Forum Moderator

  • Thank you for the reply. I'm sorry, didn't realize my post violated your TOS.

    My goals is to find some peer to peer discussion on Fibromyalgia symptoms. Of course I will leave the diagnosis to the hands of my doctors. I understand I worded my post wrong, will not happen again.

    Thank you for the welcoming reply.

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  • We have several members with fibro, I am sure they will be along to reply and help any way they can.

    Chip

  • G’day nosso 88. I have spine issues from head to tail . I was diagnosed with fibromyalgia 11 years ago. (Before my accident) my symptoms match a lot of yours. I think the worse for me was the bone aching fatigue. Made every movement hurt, sometimes I hurt to breath. The dizzyness hits when your not ready and drop you pretty quick. I have a great couple of doc’s taking care of me . I have learnt to know when I feel a bad fibro flare coming on and try to manage it. I hope you can soon learn to feel it coming on , sometimes it can help with the severity of the flare. Take care . Hope you feel better soon. Harpy

  • @nosso88. I have been chasing a firm diagnosis over the past 2 1/2 years for for a whole range of symptoms like yourself. I have seen endocrinologists, physios, various doctors and a neurologist. All they know is that I definitely have a right sided cervical radulocopathy and a couple of other things which I’d rather not post here (as I’ve been told they are not relevant to my symptoms anyway). All of this had been described as mild though and does not explain my body wide symptoms. I have been told that fibro is a possibility and too have a lot of your symptoms including the pain and twitches. So as hard as it is, try not to be too anxious. That in itself could exacerbate your symptoms.All the best and  Message me if you want to discuss anything further.

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  • memerainboltmemerainbolt IndianaPosts: 4,137

    nosso88

    I was diagnosed with Fibro almost 30 yrs. ago. Back then, there was no information anywhere on this disease. I was seeing a rheumatologist and one visit he walked in the room and said " you have Fibro" and walked out. I jumped up, had to catch up to him and said what do I do? He said "deal with it" and walked off. The internet was new so there was nothing to be found there.

    I finally found another rheumatologist that knew about Fibro. I explained all of the effects this was having on me and he said these were the side effects. Fibro attacks the nerve endings in your body. There is not a test for it, they usually go by an 18 trigger point test. No blood test, MRI or any test will show Fibro. No one has ever designed a test for it because it is not something they can see.
    My doctors have always told me I was hard to diagnose for anything. What hurts, a muscle or the Fibro. 

    Please let me know if you would like more information. I will be glad to help you out all I can.
    Sandra
    Veritas Health Forum Moderator


  • durszlakdurszlak Posts: 6
    edited 01/27/2020 - 9:23 AM

    One of the things that i have, and also  prior Fibro, ddd, chronic pain, neuropathy, diagnosis, etc, etc, with simmiar list of analgesics, Lirica/Gabapentin  and very real fibro like symptoms, is Spinal Csf Leak. Please dont get to hung up on headaches if youre dealing with this for years or decades or are spending most time flat in bed. Not everyone has hallmark headaches after chronically leaking csf for a while. Forgive me if it does not sound like you after watching videos.

    [Link Removed p/Code of Conduct - 9.01 - No External Linking]

  • @nosso88

    A few doctors and specialists have mentioned fibromyalgia to me as well, but I've not seen a rheumatologist to confirm or rule it out.

    One thing that strikes me is your ribcage pain.

    Have you ever heard of costochondritis? 



    Take care 

    Angie

  • I still struggle finding out how to get betetr and relate to these symptoms. I Rheuma had nothing else to say so he said It's a mild Fibromyalgia diagnosis. not sure what "mild" means it 's either IT or NOT. anyways... keep chasing, at worst some doctors will get upset and simply say go to Behavioral Therapy. it is frustrating.

  • I know how you feel- 5 years of chronic lower back pain, I’ve seen back, spine specialist- been at the Pain Management clinic for several back injections. Been to a Rheumatologist who says too it’s Fibromyalgia and has me on Gabapentin, which helps but at times I still have my moments. Have you had your Sacroiliac joint looked at- when X-rays, MRI were done on my back it showed nothing but the moment they press where the Sacroiliac joint is I about jumped out of my skin!

    It is aggravating going doctor to doctor for answers- when they don’t know what to do with ya, Physical Therapy— 

    To me it’s finding that right doctor that will listen to you and may know what they are doing and can help or recommend some some who can.

  • memerainboltmemerainbolt IndianaPosts: 4,137

    kmoon

    When I go to a doctor, this is what works for me. To get a doctor to listen, you need to get their attention. I always take a notepad  full of questions. But also full of how Fibro is affecting my life. I list all the side effects and what I go through every day. I will ask him for options, and not PT.  What can you do for me and can you help me? If not, would you please recommend someone. 

    And research. The more information you have the better.

    Sandra

  • Oh, I didn't notice I had so many replies, thank you all for sharing your experience, I'll make sure to take notes of your replies.

    To catch up on my situation, it is pretty much the same; been going to the PT sessions 3 times now, can't say they've helped too much but maybe they've given me a little insight. For one I've notived an 'epicenter' for my pain and that is around the area where my thoracic and lumbar spine meet, when laying on a foamroller, this particular area sends pain all over my back and rib cage. I don't know what that means and neither did my physical therapist.

    The other symptoms, fatigue, headaches, dizziness etc. have all persisted. Some days are relatively symptomless while others are all pain. Also, I've had bad experiences with my eyes on some days, they seem dry and irritated and that leads to them getting watery all the time. I'm not sure if this relates at all to my other symptoms or is just eye strain or something.

    Once again, thank you all for the informative replies, hope you are all doing good.

  • eye problems are pretty common. I cnat staand light most of the day and have to wear FL-41.  my eye strain got so bad I have a loss of balance--still dont know the cause, though it all started with eye strain dryness etc...doc says everyone is different :) glad the comments can help--hopefully for good.

  • memerainboltmemerainbolt IndianaPosts: 4,137

    I have eye problems too. My doctor suggested, which I do, using a good eye gel often. Especially since I am on my computer most of the day. It helps a lot.

  • memerainbolt  yikes...---i posted a question on another topic about TV and compuier screens and cell phones---it drives me insane NOT to be so normal like the rest and operate without suffering.no one knows where these [roblems come from--eyes muscle, tear glands, etc. CNS? I have asked all teh docs and no one offers any insight

  • memerainboltmemerainbolt IndianaPosts: 4,137

    I've had my eyes checked regularly and they cannot find anything wrong. One doctor will say the meds the other says side effects of Fibro. I just deal with it, tired of trying to figure it all out.

    Sandra

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