I am wondering if any of you have been diagnosed with autonomic dysfunction related to PBC. I know that our fatigue is related to this.
So...I have severe fatigue now for about 3 years,gradually got worse over the last 5 yrs. I was diagnosed with PBC Dec 2020.
I describe my fatigue as wading through water my legs are weak and feeling like I'm weigh down all over and need to lie down as soon as possible. It comes on after sometimes minimal exertion eg:getting up and making a cup of tea or after a walk and anywhere in between. Nap is essential and it helps but I never feel refreshed.
I also have chronic constipation getting worse over last few yrs too. I control this with laxatives and always ensure I go. In the last yr I have days where I feel nauseous all day and sometimes vomit. (Not usually constipated that day)I also feel my food gets stuck in my oesophagus and I need plenty of fluids to wash it down.
I have brain fog and word finding difficulties, worse some days than others. Especially when fatigue bad.
I have altered sensation in my legs from knees down, cold numb sensation and Severe restless legs since Jan 2020.
So,I presume this is all PBC related.have the book on PBC by David Jones and he discussed these similar symptoms, not digestion as such.
I'm off work since Nov 2021 (I'm a public health nurse), with these symptoms and my arthritis. Not sure when I'll get back to work.
I say my gp last week for bloods and she feels I should be investigated for autonomic dysfunction. I'm not sure if this is necessary as there is no specific treatment, but she feels it important to diagnose it . Anyone else had investigation and if so what are they.
Can any of you relate to this. Have any of you had a diagnosis or can you advise on how to manage this.
I eat better than I use to,except on nausea days.I do some form of excessive daly,I use to run but I can't anymore because I have autoimmune inflammatory arthritis and my feet/knees are affected. Short walks and started swimming.
Thank you .Nelly.
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Nellies47
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You seem to be going through a lot of symptoms at the moment, sorry I’ can’t really help as I don’t know much about autonomic dysfunction apart from we can have some aspects of it.
What I would say though is if your Gp wants to test for it, I would go with it and have it done for peace of mind, although there may not be a treatment for the dysfunction itself. I’am sure there could be some symptom help and once your on the radar, then getting that help will be quicker.
I say this because Ive had difficulty swallowing for a good two years and was told it was due to sicca syndrome by the GP, and to drink plenty, the consultant said the same. However i can no longer swallow tablets and solid food needs to be mashed. I’m now taking the liquid urso, it’s not that bad a taste, especially as I’ve spent a year choking on tablets, it’s such a relief not to choke twice every day. Any other tablets I need have to be crushed ir not taken. It’s now been found by barium swallow that I have an oesophageal web, pharyngeal pouch and weak motility. This may or may not be to do with autonomic dysfunction but, I’d certainly have the testing if it was suspected. Just praying once I’ve had treatment the swallowing will be better.
It might be a good question to ask at the PBC foundation Q&A session, I’am sure they could say what the testing for autonomic dysfunction involves.
Hi. Thanks so much for the reply. Sorry your going through this, yes my swallow is more problematic that it had been but not as severe as yours. Hopefully the Dr's can help you.
Yes I'm going to see what the gp comes up with and the question to pbc chat is a good idea.
I don't think it is your PBC. Speaking from personal experience, it is probably Celiac disease that is presenting with non-classic symptoms. Since PBC is an autoimmune disease, is it highly likely you have another autoimmune disorder. I don't have PBC but due to a strong family history I am closely monitored for it (which is why I am on this blog/feed). I was just diagnosed with Celiac, an autoimmune disease. My symptoms were almost identical to yours except for the nausea and vomiting part. I am 52 years old and 3 years ago I started having unexplainable fatigue. I never felt refreshed despite how much I slept. I had to take naps. At times it felt like my body was being "unplugged" and all of my energy would drain away. I also had joint pain that would vary in location and intensity. Peripheral neuropathy -- numbness and tingling in my arms and legs. Extreme brain fog -- to the point that I turned down a job promotion that required more responsibilities because I knew I mentally could not keep up. All of my initial labs were normal except for an elevated Antinuclear Antibody (ANA). I was referred to a rheumatologist who ruled out Lupus, RA, etc. Finally went back to my GP who ordered Celiac testing. I've been 100% gluten-free for 3 months now and my life is returning to normal. Such a big difference and life saver!! Please get checked for Celiac. It's worth a shot to see if this is your problem. If you don't decide to get checked, you could try going gluten free to see if this helps. At first it is a hassle but with trial and error and education, it is totally do-able. Good luck to you.
Hi. Thank you and it's interesting. I have 3 autoimmune disease, pbc, autoimmune inflammatory arthritis and hashimoto thyroid. I have been tested for coeliac disease and it was negative. I had bloods and a biopsy.
It's great that your getting back to yourself. I've recently started imuran to suppress my immune system so I'm hoping I'll start to improve.
I can relate to a lot of what you describe. I developed restless legs syndrome at the same time I developed fibromyalgia at age 13. I've had significant digestive issues previously. Through my own research I've come to the conclusion that autonomic dysfunction is at the basis of fibromyalgia, and there is much evidence to support this, but it's also frequently connected with autoimmune diseases including PBC.
I'm now taking an approach of trying to directly address autonomic dysfunction through therapies that work directly on it. Most recently that has been Bowen therapy which helps to move the body out of chronic states of fight-or-flight (sympathetic) and freeze states into a healthy parasympathetic rest-and-digest state. Literally the digestive system will not work properly if trapped in autonomic dysregulation. Bowen therapy works via gentle manipulations of the fascia that send signals to the brain and nervous system to regulate normally at an autonomic level. It has already helped me sleep a lot better and improve my dysregulated breathing (another symptom of autonomic dysfunction).
A few months ago I had the terrible brain fog and fatigue you describe. I would have to be in bed for much of the day and had enormous difficulty with the most simple cognitive processing, such as even struggling to make a cup of tea. I've since done a lot of research around digestive health. I began following an anti-candida diet and my brain fog is literally gone and the fatigue hugely improved. I'd say I have 70-80% more energy and can think clearly. In addition, the arthritic-type joint pain I was developing has disappeared.
I've read that gut dysbiosis and intestinal permeability, which often occur in conjunction with forms of bacterial and fungal overgrowth, are often initially triggered through chronic autonomic dysregulation. Sympathetic and freeze parasympathetic (as opposed to rest-and-digest parasympathetic) states withdraw the body's resources away from normal digestive processes. I'm now working with an extremely helpful naturopath and I've just done testing for intestinal permeability, the content of my microbiome and food allergy testing, and I'm awaiting the results. Intestinal permeability and gut dysbiosis are being found the be key factors in PBC in recent studies, so I'll be very interested in the results.
I do not think that autonomic dysfunction is untreatable, and I'm approaching it from several angles. I've also had past trauma starting from early childhood. I'm doing work with a very good psychologist with a method called Somatic Experiencing, the key approach being to re-regulate the autonomic nervous system. I'm finding that very helpful too. This may not be a factor in your case, but I think many of us are prone to autonomic dysfunction for a range of reasons. It's just not something that I've found conventional medical approaches generally directly address, and so I've had to think outside the box and work in a more integrated way with other kinds of practitioners. I better stop there as I've written enough, but don't give up hope about shifting autonomic function, because I strongly believe it is very possible and can lead to definite health improvements. Take care!
P.S. Also, I've had huge reduction in inflammation in my body since going gluten free. You can have gluten sensitivity without being coeliac, so you could always give it a go for a couple of months if you feel able to. In my case, I'd had frequent severe migraines for 32 years. I went gluten free just before my PBC diagnosis and I almost never get them now. Intestinal permeability can lead to gluten crossing through the intestinal wall. It's very irritating to the immune system and is increasingly being investigated in relation to autoimmunity. Not all doctors even accept intestinal permeability (leaky gut) yet, but the ongoing research supports it, and like the gut-brain connection which also took a while to be accepted, I think understandings about intestinal permeability will be as well.
Hi. Thank you so much for your thoughtful detailed reply.Bowens therapy sounds very good and I've been looking today to see if there is a practitioner locally.
I recently saw a nutritional therapist who is guiding me through a diet to reduce inflammation and try and regulate my digestion. He is focusing on leaky gut too. It was going well until I got a bad UTI 3 days ago and have nausea and pain. All I'm eating is toast again which is totally wrong I know, but is all I can tolerate. I hoping tomorrow I'll feel up to starting the good food again.
I think I will go gluten free, it's worth a try and there are lots of alternatives to gluten to eat.
I admire your determination to research and then stick to the plan to change your food. I really hope I can be as disaplined.
I know that it is up to us to try and make ourselves as well as possible, that is why I went to the nutritional therapist. It just can be so difficult when exhaustion takes over and chopping veg seams like climbing a mountain.
Hi Nelly,I’m so glad you are getting some help from the nutritional therapist. It’s so hard when our bodies are so out of whack, isn’t it! I’m getting my test results from the naturopath on Tuesday including the one for leaky gut, so very interested to know the details.
Don’t worry about eating the toast. It’s probably what your body needs right now. But yes you can always try gluten free and then at least you’ll know if it seems to make a difference or not.
I was encouraged by an article I read about a guy named Jarrett who has primary sclerosing cholangitis. He’d been given a poor prognosis that his liver would fail and told by doctors that diet would make no difference. He went gluten free anyway and had immediate improvements. He went on to do the autoimmune protocol diet and improved drastically over a couple of years and is now doing pretty well, reversing the direction of the PSC and normalising his liver readings. (Not sure if we can post links here but you could find him googling Jarrett autoimmune protocol).
I tried this diet and felt it helped a bit, but for some reason it was the anti-candida diet that was actually transformative and got rid of my brain fog and most of the fatigue. So I think it depends on the micriobiome of each individual and that’s why working with a nutritional specialist can be helpful in pinning down what’s happening in your individual case.
Bowen therapy is interesting because it’s a reset for the nervous system. I think there can be variations in how Bowen therapists work, but it is basically sending signals to the fascia, the soft connective tissues that are throughout our body, that enable the autonomic nervous system to settle into a healthy rest-and-digest state. It’s certainly helped my sleep.
I totally understand about chopping a vegetable being like climbing a mountain. I’m doing better now, but a few months back I’d plan 3 vegetables to go with some chicken. It would just end up being one vegetable because I did not have the strength nor energy to chop the other two, even though I wanted to eat them.
Hang in there! I hope the UTI is better very soon as I know they can be horrible. Take care 🙏
Hi. Thanks so much your so kind and encouraging, and I need it right now. Yes def gluten free, will do shopping in am. Found bowen therapist 1 hr away so that's good too. Yes UTI awful , pain and nausea its debilitating. I had pneumonia in June which was tough but this UTI is a lot worse to bear.
I got my test results today and thought it might be of interest in relation to the work you’re doing with the nutritional specialist.
I have both intestinal permeability and gut dysbiosis. I also have a strong dairy and beef allergy and a milder lamb allergy. The dairy makes sense as avoiding it alleviates my sinusitis symptoms but eating it brings them back. I was having almost no beef on the anti-candida diet but some lamb. My psoriasis worsened after the lamb and that now makes sense. I’m also showing sensitivity to histamines and he’s recommended a low histamine diet.
I have elevated zonulin levels which is associated with intestinal permeability, liver overload, inflammation and likely gluten sensitivity. I did not show a gluten allergy, but a gluten sensitivity is different and relates to digestive dysfunction/leaky gut. In a way that’s a positive in that if my gut heals I may be able to eat gluten again, but it’s good for me to stay off it for now.
I have a major overgrowth of the bacteria Citrobacter freundii while being low on several beneficial bacteria. I’m very low in the short chain fatty acid butyrate which helps to keep the gut barrier intact and maintain gut health, so the low level is associated with leaky gut.
So I have several supplements now to help rebalance the gut and try to heal the intestinal barrier, and I know some foods to definitely avoid. What’s interesting is that I did not show candida overgrowth, so the benefits of the candida diet would be linked to other factors such as low dairy and red meat consumption that I now know I have an allergy to, and not having gluten means it’s not crossing the leaky gut barrier and causing inflammation and irritating the immune system.
So I just wanted to share those key findings. The three tests were a full gut microbiome mapping, checking for intestinal permeability and the food allergy test. It means I’m no longer guessing what’s happening and can now directly target what’s going on. If you did the same tests you may get different or similar results, but whatever the case it gives you actual data about what’s happening so treatment can be more targeted.
I discussed autonomic function with the naturopath today too and he strongly believes it’s a key component. There seems to be a strong correlation between autonomic dysfunction, gut dysfunction and autoimmune conditions. He said a goal for me now is trying to prevent more autoimmune conditions from emerging which they so often do once you have one of them.
I just wanted to share that info in case it helps in any way. All the best.
Hi. Thank you for that. Wow, you have lots going on. Great to know so it can be helped now. Was that a blood test. Sounds interesting. Gluten does seem to be linked to autoimmune inflammation.
The microbiome mapping was done from a stool sample. The intestinal permeability test was done from a urine sample collection done over 6 hours after fasting and drinking a substance (cannot remember what it was called). The food allergy test involved blood samples I had to draw myself with a lancet that go onto circles on a card that are then tested. I was sent home test kits with instructions that are then sent to a pathology lab that specialises in these kinds of tests. They are not covered under Medicare in Australia so it cost me about $700 (Australian dollars). But I just so wanted to know what is going on and get to the source of my health issues so I went ahead with it.
It is helping the puzzle pieces fall into place. I will now see how I go with the supplements and treatment plan. Will be interesting to see how it affects PBC and whether I see a complete stabilisation of liver readings (I hope 🤞)
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