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Fibromyalgia and abdominal pain - anyone else have this?

Posted , 19 users are following.

stsarah
stsarah

Hi all,

I wrote in the abdominal forum too. But I'm thinking some fibro buddies might give some insight.

I've had extreme exhaustion on and off all my life. Was diagnosed with PCOS, then Hashimotos, then Graves Disease and now most recently told that it was probably none of those things and is likely Lupus or Fibromyalgia.

In Feb I had campylobacter and landed in hospital for 5 days. I have experienced chronic pain all over my body since then. GP decided it was either lupus (liver issues involving surgery where part of my liver and part of my stomach was removed due to extreme infection - very small part of my stomach, quite a bit of my liver and my liver is thankfully fully grown again and normal. Had no issue with my stomach until Feb). Ever since then, I have what is considered chronic constipation (I can go 8-14 days without going to the bathroom!) but I've also had extreme exhaustion, hair loss, agonising pain in my shoulders, neck and hips and morning stiffness in my knees and fingers. I also have numbness/pins and needles at least once a day in my fingers or feet. I have chronic dizzy spells where I think I'm going to faint. Paracetamol does not help at all. Neither does Ibruprofen. Codeine & Ibruprofen mix tended to help a bit with the shoulder and hip pain but not much.

GP sent me to a rhuematologist in early August. He did a range of tests and said "none of the results point to any particular disease, you have markers for a number of diseases" and is continuing to do more blood tests. In August, he said it was likely a mix-message issue with my CNS, then earlier this month said it was fibromyalgia, then the next week said he never said it was fibromyalgia (he had even written it in my GP's report so we KNOW he said it was)

Anyway, two weeks ago I started getting extreme pain (like the campylobacter pain I had in Feb) in my upper left quadrant of my abdomen (doctor said likely small bowel), and landed in the emergency room and then hospital for 4 days. CT scan did not show anything wrong. Bloods all normal. Temp occasionally low-grade fever but mostly normal. Slightly low blood pressure but nothing to worry about. Eventually got sent home with oxycontin and told to come back to see gastroenterologist if it got worse.

It got worse. Gastroscopy has been done (last Wednesday) but I don't get the results until October 13 (surely they would have told me if it was bad right?!) Told to see my rhuematologist.

Rhuematologist (who by the way I think is hopeless, he doesn't listen and won't help me!) told me that fibromyalgia NEVER affects the abdomen. He told me I just need to see my gastroenterologist and make him sort that out as it's totally separate to what's going on with my pain (which by the way he refuses to treat - I am on 5mg endep for sleep but he said take paracetamol for pain - um why?! It does NOTHING!)

Pain has now moved to my lower right quadrant (above my pelvis diagnal to my belly button) as well as the upper right quadrant.

Has anyone experienced this with Fibromyalgia?! Or do I have something on top of the fibromyalgia I now have to worry about?!?!

1 like, 35 replies

35 Replies

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  • Misssy2
    Misssy2 stsarah

    Posted

    Anxiety causes stomach pain....also sounds like you have carpal tunnel with the sore neck and tingling.

    You need to drink lots of WATER....to fix some of your pain.

    Do you normall drink 4 large glasses a day?  You would be amazed how much water helps....I was in hospital for 4 days due to dehydration from alcohol...and it was stressed to me on many occasions that water is essential for organ and muscle function.

    My sister has MS...and only drank coffee all day.  She was complaining...she is now drinking water for about 4 days now and has reported to me that she feels a lot different and a lot better.

    Not enough water also effects blood pressure and pulse....when the organs are deprived of this fluid....they don't function well...causing many of the symptoms you are experiencing.

    • stsarah
      stsarah Misssy2

      Posted

      Hi missy,

      I drink at least 2 litres of water daily as my diet to reverse the liver damage after surgery required me to stop drinking diet coke and limited my coffee intake to 1 per day. I've grown to love water although it was a struggle at first.

      It is vital to ensure you aren't dehydrated though !!

      Thanks for your advice :-)

  • Ripley_08547
    Ripley_08547 stsarah

    Posted

    Hello stsarah, I'm new to the forum, I have abdominal and lower back pain. Also tingling, joint pain, severe neck pain, and also suffer with a sore throat on and off. Chronic hot spells and feelings of dizziness.

    I do suffer with ibs also, so with that and fibro my lower half can be very painful.

    I have been taking tapentadol 150mg per day, Venlafaxine 150mg, and Paracetamol. Which helps a lot.. I have a cream for my back called Capsaicin (which is chilli based), I have been told that it can be used for abdominal pain also. But this can sting a bit, lol.

    Fatigue is also an issue.

    I hope you resolve your pains soon, sending comforting hugs to you x

    • stsarah
      stsarah Ripley_08547

      Posted

      Thanks so much Michelle! I've noted down the cream and will look for it! At this point I will honestly try anything!!

      Sounds like you've had quite the journey too. I think I should look into IBS more as it seems to have come up a bit as something to explore as the cause.

      Appreciate your hugs and am sending gentle hugs back!!

  • diagnosisisalie
    diagnosisisalie stsarah

    Posted

    Hi I am no doctor. I had a hysterectomy last year after a gull year of anemia and they think that is when fibro set in , I just didn't see it until a few months ago. I for one have a bladder problem that I can not have surgery on until I get control over the pain, nothing like a 38 year old 4.0 student needing diapears. I also get cramps and then start to bleed, no one can do anything until the fibro is done. I think some viatmin B12 might help some. Good Luck !
    • stsarah
      stsarah diagnosisisalie

      Posted

      My GP ordered vitamin B12 last time I was with her and I had my first shot two weeks ago. Apparently my levels are ok but on the lower end of ok so she thought it wouldn't hurt. She said not to expect miracles after the first shot and my next one is in two weeks so hopefully it may help the next time? How long did it take to work for you (or are you still waiting?)

      Sending hopes and prayers your pain receeds enough for your surgery to happen soon for you!!!

    • diagnosisisalie
      diagnosisisalie stsarah

      Posted

      I use to get Viatim B12 shots every so often when I was younger . I felt the zing then and I was good as gold , go, go ,go . When I was sick with anemia I could feel the Zing and I would try to go go go , but when it worn down I got super sick. So enjoy the feeling of better some what but don't do a thing.
    • stsarah
      stsarah diagnosisisalie

      Posted

      Oh I hope the next one brings the zing! I promise not to go go go if it happens though!!
    • diagnosisisalie
      diagnosisisalie stsarah

      Posted

      SOmething that I often forget as I was raised where you respected your authority figures , such as a doctor, you know the looking in the eye and talking, yes sir/no mam. SOmetimes it is hard to remember that they are getting paid either from us or the insurance. They are supplying us the service .
  • christine26761
    christine26761 stsarah

    Posted

    Wow!!  Such  a mess you have to believe...

    ive had Fibro niw and Sirgrebs Syndrone plus it hrs..for 30  years...it did take 29 yrs of illnesses befire diagnoses.,then another couple if years to be out on the right dosage and med,,really feeling for you..this is just horrid...usually you get Chronic Fatigue Syndrome with Fibro.,well that's most of our experience..I really hope you get some  help on here stsarah, actually I'm confident that you will...be blessed, have a lovely day.,:-) cxx

    • christine26761
      christine26761 stsarah

      Posted

      I think we are all pretty amazing on here actually,  putting up with what we do., some for years...whatever experience in life don't break us, I reckon it  make us..be blessed stsarah, have a lovely day..:-) xxx 

      I just re read my post to you yesterday...wow!! the autocorrecror made it something else ...I've had Fibro and Sorgrens Syndrone plus other autoimmune issues for 30 years now...it only took 10 years to be duagnised..ooops sorry...it all looked sooo alien.. 

    • stsarah
      stsarah christine26761

      Posted

      We are amazing I think. I wouldn't wish this pain on my worst enemy. I have made an appointment for a new rheumatologist since my other one is a nightmare and not willing to diagnose anything or work hard to find a diagnosis. The new one sent a whole lot of questionnaires out and two of the questions were;

      How would you feel if this level of pain was to continue the rest of your life? - UM NOT ACCEPTABLE!

      How would you feel if this level of pain was lessened but not completely gone with treatment? - I had to answer honestly that whilst it would not be desirable, it's better than no change.

      Because that's the sort of warriors we are!

    • christine26761
      christine26761 stsarah

      Posted

      Well done you,.... getting a new Rhumo., ....it's hard to start all over again with a new doctor..but you certainly want and need one who listens and can diagnose ......sounds to be on the ball too..sooo far sooo good..we do need to take our health in our own hands...being proactive really help us too...be blessed stsarah, have a,lovely day...:-) xxxx
  • ian87170
    ian87170 stsarah

    Posted

    Hi stsarah. been diagnosed with fibromyalgia for the past 5 years.ive experienced anxiety depression,alcohol dependency and extreme physical pain.my days are a scale of 1 to 10 but most likely 11.the way I feel in the morning is bordering on sick to the stomach and pain from head to toe.if u do your research fibromyalgia is above m.s in pain.its a condition that is not recognised enough. please be strong xxx
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