Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Extremely Uncomfortable Swollen Abdomen

Discussion in 'General ME/CFS Discussion' started by bertie7, Apr 25, 2017.

  1. bertie7

    bertie7

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    Hello,

    In addition to swollen, painful lymph nodes all over my body (which did show abnormal in an iridium WBC scan) In recent years I have developed terrible swelling and pressure in my torso, mainly my upper abdomen. It has expanded almost 15 inches in the past 18 months with the exception of the swelling of nodes in throughout the rest of my body, I have not experienced any noticeable increases in any area of my body or actual fat gain. However the WBC scan showed no abnormal activity there and I have also had a CAT scan which confirmed the same with the exception of a slightly enlarged uterus (due to fibroids) and a small lesion in my ovary which was putting some pressure on my lower colon. My spleen was normal as was my liver size, no swelling at all.

    I can't eat very much without feeling like I'm going to burst and and my abdomen also swells more after physical exertion (as do my lymph node system) I also have significant heartburn.

    Has anyone experienced these symptoms and/or have any suggestions for help, I'm really becoming desperate!

    Thanks in advance
     
  2. suseq

    suseq

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    I experience much of what you describe, although I have not had the investigations you have had, not least because I am now too ill to tolerate them due to impact of attendance and sensory hypersensitivity.

    The swelling of my upper abdomen on exertion and discomfort/tenderness under diaphragm is something I have raised consistently over c.15 years without any conclusion other than it's likely to be odema! I've also repeatedly highlighted that throats glands swell on exertion too which has been met with similar dismissal.

    My GP is extremely supportive; however, it's the consultant referrals that are dismissive given I come under the influence of the King's College trust.

    I had diagnosis of thyroid disease (Hashimoto's), IBS, LPR/GERD, fibroids, polycystic ovaries and early menopause years before I received NHS psych diagnosis of CFS (astoundingly thought to be conversion disorder until I raised complaint) after I failed to recover from yet another gastro/upper respiratory flu type illness in Nov 2010 that left me with no reliable energy or voice, and unable to sustain any activity without relapse.

    Referral for assessment for CFS had followed referral to Thyroid clinic from hospital dental clinic where I was being treated for oral lichen planus and where full range of blood tests monitored over 2 years had shown increasing antibodies and low borderline B12.

    Thyroid clinic confirmed diagnosis of Hashi's and felt continued T4 thyroxin replacement adequate (I've taken thyroxin since 2004 hypothyroid diagnosis. I've repeatedly raised possibility of T4/T3 conversion failure and poss need for addition of T3 with Endo to be met with derision and dismissal back to GP with suggestion that I seem to know a lot and would likely benefit from psych support given my distress and what they called MUS).

    I was also undergoing speech therapy at this stage too which unfortunately wasn't successful in helping me to regain fluent reliable speech and my speech is still severely affected by weakness of breath, hoarseness, loss of control of tongue resulting in a stammer and inability to start or continue speech, and most recently severe backward head jerk and tremor on speaking, although I also experience it less frequently with movement at other times too.

    The subsequent channelling of my illness through King's psych/CFS clinic has conflicted my care and effectively blocked any further treatment. At my initial CFS clinic consult they told me they were concerned as blood tests showed muscle inflammation; however this and all my other med history was ignored as it didn't fit with their belief that CBT and graded activity would help me to recover and return to work.

    Despite all my best efforts and a healthy lifestyle I'm no further forward health wise than I was over 6 years ago, although the addition of high dose Vit D3, acidophilus, methylcobalamin, methylfolate and Bvit complex has helped with cognitive, gastro function and maintaining overall function as much as possible.

    I empathise completely with your sense of desperation although I have learnt to minimise it, and can offer no solutions other than to hold on to the very real hope that current research will find and prove the root cause.

    Take care.
     
    Binkie4 and MeSci like this.
  3. lansbergen

    lansbergen Senior Member

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    My belly looked like I was nine months pregant with twins. Over the last years it gradualy shrank to almost normal. The pain near ter diaphragma has decreased a lot. The bellywall is supple again and I can use my bellymuscles
     
  4. CCC

    CCC Senior Member

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    A relative had something similar: it was adhesions in the upper or lower intestines (I can't remember which).
     
  5. Helen

    Helen Senior Member

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    I have no words. There are too many endocrinologists around the world, who don´t seem to be able to read medical articles and literature. Did you get a free T3 test? I guess not, but maybe you could try to get it from another doctor? You maybe know that it is supposed to be high normal to be OK. If you have a chance to see any of the Drs. Herthoge in Brussels you would surely get the help you´d need.

    Edit: @bertie7 , I do hope that you´ll get help too. To complicated to handle as a patient.
     
    MeSci and suseq like this.
  6. suseq

    suseq

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    Thanks Helen. My free T3 has been tested several times and most recently by my GP, when it showed low side of normal if I remember correctly. Unfortunately don't have figs to hand and in my experience Endo's dismiss T3 if TSH & T4 levels considered within range. However, plan/hope to see GP this week and your response is prompt to discuss/get tested again.
     
    MeSci likes this.
  7. perchance dreamer

    perchance dreamer Senior Member

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    Oh, @bertie7, that sounds dreadful. It sounds like you've had good testing done, but I would ask what type of ovarian lesion you have because different types can cause some of the symptoms you describe. Have you had ultrasound done?

    You might consider getting a 2nd opinion since you are still having all these problems.

    I used to have really bad heartburn. I'll tell you what got rid of it for me, but I don't know if it would help if your heartburn is caused by the symptoms you described.

    1. Sleeping on a wedge. This is the one I have.

    https://www.relaxtheback.com/index....ml?green=BB415DFF-5768-5B30-AE95-4E6C02AC3A94

    2. Taking digestive enzymes before meals.

    3. Taking limonene every night. It makes me a little sleepy, so I take it in the evening. Here's the brand I use:

    https://www.amazon.com/Jarrow-Formu...93138505&sr=1-1&keywords=jarrow+limonene&th=1
     
  8. erin

    erin Senior Member

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    I had this last year. It is such a horrible thing. Sorry that you have it too. I tried so much but it didn't go away for a month or maybe even more. Eventually it gradually got better but never back to normal since then.
    Now I eat gluten free and no refined sugar. I am better, almost back to normal.
    Good luck I hope you get better asap.

    Here's the link of last year's episode, there were very good suggestions from the PR members.

    http://forums.phoenixrising.me/index.php?threads/help-severly-bloated.43965/#post-714516
     
    Last edited: Apr 25, 2017
  9. 5150

    5150 Senior Member

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    --------------------------------------------------------
    This sounds like perhaps SIBO, +leaky gut
    I finally brought under control my swollen and Painful stomach/gut by using the probiotic VSL#3
    .
    For the heartburn, several things: a teaspoon of baking soda in a glass of water ; or just over the counter PeptoBismol, just a shot ; there's another one called Gaviscon, that has helped me a lot ; despite reports of "not good', i still use Omeprazole - it's otc now.

    For leaky gut, there are as many ideas about solving it as all those little Carters' liver pills. Accepted as "very good" is collagen bone broth. Look on Amazon.

    best hopes for you.

    ps these are things that helped me. we all are different ,so it's a toss up until you try something / not medical advice.
     
  10. Kati

    Kati Patient in training

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    Hi @bertie7, clearly something is going on, and it might be best you get diagnosed via a doctor in a doctor's office rather than on this forum. You may need further imaging or diagnostics, such as abdominal ultrasound for instance, and figure out the cause of all of your symptoms.

    It might be best not to play the guessing game which serve as being either alarming or reassuring. You won't be sure what it is until you get a sound diagnosis from a health care professonals who will consider all the possibilities.

    Sending my best wishes.
     
    suseq and Never Give Up like this.
  11. Eian Mcneely

    Eian Mcneely

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    I had similar pain in the lower intestine with much stretch and pull from below....i suggest to seek second opinion
     
  12. kangaSue

    kangaSue Senior Member

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    As your lymph nodes are swollen, Lymph Drainage Massage might help.The Perrin Technique was something I saw suggested for ME/CFS.

    If your mesenteric lymph system isn't functioning properly, your abdomen can blow up to look like like you're ready to give birth. This part of the lymph system relies in part on your gastric emptying function so if your GI tract has reduced peristalsis, you lose some of the "pump" required to move lymph fluid effectively.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914116/
     
  13. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Like others have said you definitely need to push for an ultrasound OP. Your issues could be caused by absolutely anything and I'm sure an ultrasound would be able to determine whether it is general bloating or something more sinister.
     

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