Abdominal fatigue

[daisybell]

In recent weeks, I have been on a downward trajectory in terms of feeling unwell and having less and less energy. At the same time I have been experiencing some pains in my abdomen - initially this was one -side and very sharp - and I thought perhaps I had an issue with my ovary. Now I'm getting cramps all through my abdomen - like when you get a stitch in your diaphragm, but it's all through my abdominal area.

Has anyone else had this? It makes it really hard to do anything because I find it painful and exhausting trying to stand up and support myself. Sitting with my back supported or lying down takes away most of the discomfort, but not all.

I don't know if this is a new ME symptom for me, or a sign of something else going on, so wondered if others had also experienced this?

Thanks!

 

[rosie26]

@daisybell Hope this awful pain passes for you soon and your ME eases up. Keep resting. I guess you would have picked up by now if it was something you have eaten. Have you been eating anything different lately or too much of something? I find corn can do this to me if I have too much of it. Does your bowel feel unsettled or is the pain elsewhere than the bowel?

 

[daisybell]

Thanks @rosie26
It doesn't feel like my bowel - more like all the muscles around my abdomen.. I dont feel like eating much but my digestion is unchanged. I'm getting lots of cramps everywhere at the moment, despite taking magnesium, so perhaps it's just that these have spread to my core muscles as well now.

 

[Deltrus]

Did it start on your right side, a little bit under your rib? Could be portal hypertension.

I've been researching ammonia and blood acidity lately, so I know one possible cause of portal hypertension is blood acidity causing high ammonia which your body has to constantly cram into the queue to the liver (the portal vein) in order to detox it. The solution would be to lower sources of ammonia (meat) and increase vitamin B1.

There's probably lots of other causes for abdominal pain tho.

 

[Kati]

Hi @daisybell i have had issues with cramps and discomfort early on in my illness which were limiting my life even more. About 4months into my onset-related EBV infection the US tech found a 8.5 cm ovarian cyst which I never had symptoms for and I never had those before either.

I do not want to alarm you, but any kind of vague symptoms in the abdomen should not be neglected and it wouldn't hurt for you to have an abdominal and pelvic ultrasound and/or being seen by a doctor to rule out the essentials.

Best wishes, Kati

 

[daisybell]

Thanks @Kati
The pain started around my right ovary - very sharp and worse on movement, but that eased over the next day or so. I was running through ovarian issues and appendicitis as differential diagnoses!! Anyhow, since then it's become more diffuse but is also more constant. I've been to the GP - who said she was referring me for an ultrasound, but I rang yesterday after waiting three weeks with no word from anyone, to discover that she hadn't in fact done so, but had written in her notes that she would if the pain got worse. And now she is on holiday.

So another doctor has written me a referral - I'll need to go private (typical), which I need to collect. The nurse usefully said I should go to the hospital if the pain is really bad...

 

[Kati]

Great that you're getting it looked at. @daisybell. Ughhh regarding miscommunication with GP. It's happening all the time here too... Maddening. Fingers crossed.

 

[JAH]

I have this. Do you also have any pain- even minor- in your back? It took me 20 years to diagnose this, but for me it's a radiculopathy in my back. I feel the pain around my appendix, and pain and cramping around my navel. My abdomen cramps up when I walk, or exert myself in any way. I also have myelin sheath damage in my abdomen. All this because of the radiculopathy...JAH

 

[daisybell]

I have this. Do you also have any pain- even minor- in your back? It took me 20 years to diagnose this, but for me it's a radiculopathy in my back. I feel the pain around my appendix, and pain and cramping around my navel. My abdomen cramps up when I walk, or exert myself in any way. I also have myelin sheath damage in my abdomen. All this because of the radiculopathy...JAH

No- I only get back pain if I've done something I shouldn't have like trying to dig up something big in the garden...

 

[rosie26]

How are you @daisybell. Are you still getting this pain?

 

[daisybell]

Hi @rosie26 thanks for asking!
Yes, it's still there, but I've had a few days without it over the past month.

I had an ultrasound, and got the all-clear, so I'm assuming that it's just ME related myalgia. It's strange isn't it how different muscle groups can become involved - this was never a symptom in the earlier years for me, and having fatigue and cramping through your core abdominal muscles certainly affects how easy it is to do things - e.g. When I bend over to pick something up, I get instant pain now. Plus I now find it hard to sit in a chair without really good back support for more than a few minutes.

I think I need to try to pace better and rest more - but it's always a challenge because there's stuff I need to try to get done just as part of daily life. Anyhow, I've got an appointment with the specialist in a few weeks. I found out that she does a clinic down near me, so I can see her without having to get up to Auckland!

 

[rosie26]

Hi @rosie26 thanks for asking!
Yes, it's still there, but I've had a few days without it over the past month.

I had an ultrasound, and got the all-clear, so I'm assuming that it's just ME related myalgia. It's strange isn't it how different muscle groups can become involved - this was never a symptom in the earlier years for me, and having fatigue and cramping through your core abdominal muscles certainly affects how easy it is to do things - e.g. When I bend over to pick something up, I get instant pain now. Plus I now find it hard to sit in a chair without really good back support for more than a few minutes.

I think I need to try to pace better and rest more - but it's always a challenge because there's stuff I need to try to get done just as part of daily life. Anyhow, I've got an appointment with the specialist in a few weeks. I found out that she does a clinic down near me, so I can see her without having to get up to Auckland!

Pleased to hear the ultrasound came back ok. And all the best with your next specialist appointment. I wonder if the LDN might be causing these cramps?

I do have discomfort bending over as well but it's due to a lump/mass that developed last year. Abdominal ultrasound showed nothing.

 

[daisybell]

Sorry to hear you have discomfort too. You do seem to be having a bad time of things.. Any sign of light at the end of the tunnel?
I hope it isn't the LDN, because although I don't notice it making me feel better, I certainly notice I feel worse if I miss a dose or if I try to reduce my dose...

Have you had any luck with referrals to specialists?

 

[rosie26]

Sorry to hear you have discomfort too. You do seem to be having a bad time of things.. Any sign of light at the end of the tunnel?
I hope it isn't the LDN, because although I don't notice it making me feel better, I certainly notice I feel worse if I miss a dose or if I try to reduce my dose...

Have you had any luck with referrals to specialists?

No sign yet. I am so sick of no treatment. I have no idea of what I should be trying and concerned what I do try, causes more harm.

I haven't had any luck with referrals to specialists. I am thinking of going for a private visit and chat. I need to find out the costs, next week. I feel I have reached a more tricky stage of my illness now. Which upsets me, it's been too long with no help. However, I will soldier on. Like a good soldier.

 

[daisybell]

It sucks that we have to soldier on with no treatment - and with no specialists taking an interest. It's so hard to stay positive in the face of that, even though there are glimmers of light in the rituximab trial and the research in the US. Somehow it feels as though mainstream medicine is never going to catch up. I wonder what it will take...
I'm thinking of you @rosie26

 

[Lolinda]

Hi @daisybell does the garden work etc cause pain also if you have eaten nothing yet in the morning? I have such a pain: it comes when I have eaten and do sthg. Can be many many hours after eating. But it does not come if I am fasting. In me it developed stronger and stronger over the years. Now it is so bad that it is enough to stand up from the bed for more than half an hour and it is there and forcing me to lay back. In me it has sthg to do with portal hypertension as mentioned above by @Deltrus but its more complicated. I try to super simplify: If I exert myself (or meanwhile, if I stand up), blood disappears from my abdomen causing hypoxia, causing abdominal pain. This normally happens in healthy people if they run a marathon. I had to present the docs research papers so they cannot wipe me away with their medical "wisdom" and I had to simplify it to something easily doable with a doppler ultrasound. The third vascular doc was able to do it. Then I designed a full test based the results, it was damn difficult to get normal values, but finally I was plain lucky to find a study. Asked a vascular diseases prof at the best hospital of the country to do it for me. That test then showed the true extent of the problem. Now started treatments based on a variety of studies, unfortunately all quite experimental but at least not dangerous

An alternative explanation might be sthg as simple as gut dysbiosis. Prof Meirleir, a Netherlands-based CFS researcher, uses this as a test routinely: he presses the point on the belly where the valve between the colon and the ileum is. If that point hurts its a proof of dysbiosis, inflammation of that valve. I can dig out the link how to do the test, if it is of interest to you. I have that too, the pain upon pressing that point and SIBO. Treatment for SIBO is not so simple as some people think. (Suppressing it for a while by antibiotics is simple, wait for it to return doubly that bad anywhere between 2 weeks to 2 years)

Adding to this, issues of abdominal blood flow related to portal hypertension cause SIBO, and SIBO can, depending on the bacteria, cause blood flow issues or even portal hypertension. I have the links to the research somewhere if it is of interest.

 

[daisybell]

Hi @Llinda thanks for your reply. I'm sure this is to do with muscle fatigue. I got pain yesterday from driving in the car - I think that was using my core muscles for stability on a road with lots of bends. Overall, the pain has been less in recent weeks which is good.

 

[Lolinda]

@daisybell with muscle pain in the belly I can't really help. anywise, its disappearing as you say, great news . I did have severe muscle pain when I had ME and even more severe when I cured myself out of it, but that was not in the abdomen at all.

 

[Jemima]

In recent weeks, I have been on a downward trajectory in terms of feeling unwell and having less and less energy. At the same time I have been experiencing some pains in my abdomen - initially this was one -side and very sharp - and I thought perhaps I had an issue with my ovary. Now I'm getting cramps all through my abdomen - like when you get a stitch in your diaphragm, but it's all through my abdominal area.

Has anyone else had this? It makes it really hard to do anything because I find it painful and exhausting trying to stand up and support myself. Sitting with my back supported or lying down takes away most of the discomfort, but not all.

I don't know if this is a new ME symptom for me, or a sign of something else going on, so wondered if others had also experienced this?

Thanks!

hello, YES! I am suffering with this exact symptom as one of many nasty little issues this relapse, does yours feel like your abdo muscles are literally ceasing up? The only thing I have heard simiar is the M.S hug.

 

[Jemima]

PS Can you sit up properly, I find it totally impossible when this is at its worst. I feel like i need to hold on to the area.