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Mesenteric Panniculitis or Sclerosing Mesenteritis
I thought I would start a discussion for patients with Mesenteric Panniculitis. From what I know, this auto-immune disorder has three stages to it, each with differing names (Mesenteric Panniculitis, Schlerosing Mesenteritis, Retractile Mesenteritis). Typically, this appears to be in older individuals with some other under-lying problem (Lymphoma, tumor, diverticulitis).
I have an atypical presentation because I do not have an underlying cause. The doctors seem to be hoping for Lymphoma to appear so they can treat it and have the auto-immune go away. I am interested in hearing from others with this. I had this diagnosed in 2011, so I am interested in hearing more about what this is like to live with. I want to hear from others who also have an atypical presentation. Did is come back? Also interested in hearing from those with Lymphoma. How was the treatment? Did it address the auto-immune?
Pretty much, I am interested in hearing from anyone who has had this, so i can better understand it, and not feel so alone with this!!
Bill
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Thanks Von,
To be honest, this forum has been such a help for me and not only to learn about new treatments, but just knowing that you all get it and I'm not 'strange'! And yes, when you described your sleep position, I envisioned it quite clearly! My pain is in the same areas as yours were. You did mention sclerosing which I thought is sort of a stage two of the disease. Is this something I should be discussing with my doctor? Is there a test for this? For pain, I had thought of tramadol or tylenol 2 or 3, at least to take the edge off. I'm going to send a text to my GP tomorrow to see what he thinks. I honestly don't mind waiting for treatment as long as I can be a little more comfortable as far as the pain is concerned!
Kim
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1 ReactionHi @kimh,
If you are in a lot of pain, I recommend you try the autoimmune protocol of the Paleo diet. Others have tried FODMAP, but the autoimmune protocol has done the trick for me. I also had immense success with supplements for autoimmune conditions as recommended by Chris Kresser (http://my.chriskresser.com/the-supplement-guide/). I used to have the same sleeping pain. Although my MRI still shows that I have the disease, I can say my bloating is gone and so is my pain. I don't take meds, but just go strict with my diet and my supplements. I realize not all folks have the autoimmune version, but these supplements are great for gerd and general gut health.
Hope this helps.
take care,
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1 ReactionHello @carbxbe8206 , How have you been?
I hope you are continuing to feel better. The last time we corresponded you were feeling a little better.
It would be good to hear from you.
Best wishes,
@vdouglas
Von
@kimh
Being awakened at night has been a primary concern for me with this in terms of quality of life. Many people experience positional pain with mesenteritis. Some when lying down, others while standing or sitting. In my case, when sleeping in any horizontal position, my symptoms increase, and as my symptoms increase I wake more frequently and get less quality sleep.
For me, there are two things, primarily, that have helped with this:
1) Extended release Hyoscyamine (I use the brand name Symax Duotab), which was prescribed by a GI doctor.
2) Sleeping with my torso elevated. I use a Medcline wedge for this, but there are many different supports for this purpose available. An adjustable bed is probably the best option (my parents have one and they love it), although obviously expensive. I find that the Medcline works well for me.
I've also found that lying on the opposite side of the pain helps sometimes (my pain is on the left upper quad). Other times, stretching out my body on the side where the pain is helps. Using a heating pad on the abdomen at bedtime also seems to help me.
Keep in mind that this thing is a journey. Small steps forward in learning to live with it are significant.
I hope some of the advice here helps! Best wishes!
PS: In terms of being down, I've definitely been there. One thing that helped me enormously when I was feeling like my life was over was Toni Bernhard's book "How to Be Sick." She comes from a Buddhist perspective, but I feel like it would be helpful for anyone regardless of their individual beliefs.
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2 ReactionsKeeping my body elevated may help and I will definitely ask my doctor about the hyoscyamine as well. I'm surprised that my body hasn't taken to the prednisone as efficiently as other times and that is a little concerning for me. As for the lack of sleep, I am lucky that I am not yet back to work so I am not on 'the go' as I would typically be, but I have to wonder if being in constant discomfort is tiring out my body, which may be another contributor to lack of pain relief! Also, thank you for the heads up regarding the read. I will look into it for sure....
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1 ReactionHas anyone experimented with high doses of fish oil?
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1 ReactionI have not.
Allergic to all seafood so nope for me.
yeah that would be a big Nope if you were allergic to it.
I forget the article I read years ago,where they were experimenting on using it with cancer patients in high doses to help pain.I wish I could find it again.
@poppy73
I have not.
You may find this short article from Harvard Medical School's Harvard Health Blog:
https://www.health.harvard.edu/blog/fish-oil-friend-or-foe-201307126467
In general, I think we need to keep any recommendations of high-dose supplements in perspective.
That said, if there is any evidence or indications that it may help with mesenteritis, that would be interesting!