Hello! I live in the United States and have been diagnosed with PBC for about 4 years. From the beginning my symptoms have been brain fog and extreme fatigue both of which has been so debilitating that I had to quit working a job of 14 years. One that I enjoyed (most of the time) and was quite good at before symptoms began. Since diagnosis I have seen 2 doctors. I am so down and frustrated with both for their lack of concern for my symptoms. Brain fog and extreme fatigue is something I strongly complain about at each visit. But, neither seem to have much to say about it. The reaction I receive from them is "well yes those are possible symptoms of PBC" and offer no support for treatment. The first doctor I started seeing actually told my to "just drink more coffee"!!! Seriously if that helped I wouldn't be asking my doctor because more caffeine is the very first thing I tried as naturally its the first thing most people first go to when tired. I felt so unheard. Still do. The second doctor I started seeing did very reluctantly prescribe me an amphetamine (do not remember the name, but was something similar that is used for ADHD) but said she rarely prescribes that and only gave me 15 pills and stated she would not continue to prescribe me more. Then my insurance denied me to receive anyway so I never was able to try and see if it helped. I do understand that there is not much help for these 2 symptoms. However, I continue to read articles and The Bear Facts and see that there are some things that could be offered and tried. But, neither doctor ever offered any attempt to help other than the amphetamine, not even a simple exercise program. Everyday as I suffer from my symptoms, have more bad days than I do good ones, I feel so hopeless with my life now as a person with PBC. PBC has turned me from an adventurous outgoing person to a hermit in my home and bed. I am 43 years old with a husband, 8 year old daughter, and 6 year old son that I hear more about through the door of my bedroom than I actually see and get to spend time and enjoy. The mental anguish and guilt is great. I am currently trying to receive disability and have a hearing in front of a judge in September. However, I am very concerned and not too optimistic that I will be granted it from the judge. Since my own liver specialist does not seem concerned about brain fog and fatigue why would a judge. I also have Juvenilie Diabetes (Type 1), Hashimoto's Thyroid disease, Scoliosis, Idiopathic Spinal Epideral Lipomatosis (mass around my spinal cord that causes pain), Sacroilliac Joint Disease (causes pain and arthritis), Gastroparesis, Barrett's Syndrome, and Asthma. Although each one alone may not seem debilitating enough to some, when put together the compounded fatigue and pain from each condition is....well extreme.
Now that I have complained my entire blog, I was wondering if anyone has any info for successful treatment of fatigue, brain fog. Also, if anyone can provide any information on receiving disability in the USA. Are there any accurate and informative articles that I can provide to the judge that supports the severity of brain fog and extreme fatigue etc etc etc.
Thank you for listening!
Stacy
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WOW, you are definitely going through a lot dear. I am at stage 4 with cirrhosis, small esophageal varicies, enlarged liver & spleen, hyperthyroidism, UC, & most recently fibromyalgia😒. I also have HE, better known as brain fog. The fatigue is something we just deal with for the most part but I am taking Xifaxan for the brain fog & some take Lactulose. The brain fog for me is due to my liver not being able to filter out toxins like ammonia, in turn the ammonia affects the way my neurons in my brain function. The Xifaxan helps break down the ammonia. You really need to be referred to a heptologist. In my case I saw my gastro Dr until I hit stage 4. Now I see him, plus he referred me to Indiana University Hospital to my Heptologist. He's very educated with the ins & outs of PBC. I have been very blessed to have such great doctors for my health care team. I hope something here will be of help.
I am also going to IU med center. Had my first appointment last Friday. It was the first time I heard of PBC. I saw Margaret Sozio. She was good. I just thought I had fatty liver... they took blood and I am waiting to hear about AMA and other results.... this page has helped calm me when no other info is available....
I see Howard Masuoka there, he's great. My first visit was March 2nd of this year. My GI, in Evansville referred me to him once I hit stage 4😞. I still see him as well. But my main specialist is at IU. Maybe we'll run into each other some time😁
I can only comment on the fatigue and brain fog as to say my docs pretty much brush over it like yours did.
However, I am working with a social security disability attorney. In the state of Colorado I was told the minimum requirement was at least two varices bleeds requiring a transfusion of at least two pints of blood each. And you had to have a serious enough bleed each time to require hospitalization. I am sensing like me I don't want to qualify on that level.
However the attorney is taking a different rout. He is not stating I can't work. The case will be based on the cumulative effect for multiple diagnosis and that the multiple accommodations any employer would have to make would not be "reasonable". I think this is a good way fight the case of a person with PBC have almost an invisible disability. Our doctors will be the first ones to say we look great! But many people with PBC have multiple or overlapping disease process. If I had a job where I could vary my schedule as needed due to accommodate sleepless nights. If I had a job where I could work partly at home from my computer on days I was vomiting...... If I had a job where I could take my service dog anywhere I go.... (Social security disability actually ruled due to brain fog I couldn't work management anymore - but could go back to a security job I took "in between jobs" one year and that security said we would love you but No way in heck are we set up for the liability of a canine in any of our positions. I could run a bunch of accommodations I would need. If an employer gives me enough flexibility I am an awesome worker, but most employers won't hire me due to the accommodations I need.
Remember that employers aren't required by ADA law to provide for all accommodations necessary for your to work. They are only required to provide accommodations "within reason". So go prove the accommodations you require are NOT reasonable.
Google all your medical conditions and what ADA recommendations are for each. Compile the list and give it to your attorney and see what he thinks. Attorneys are only allowed to charge a certain % to a certain cap of what you will recover from the 1st day of your disability filed. I think it is well worth the fight because it has other benefits in the USA. i.e. if you win you can get Medicare, or if you win and are under the age of 59.5 you can access your IRA without penalty. At least this is the case in Colorado. Be aware it is a long process. Expect to be denied one or two times. That's when you take your case to court. The only thing that will expedite your case is if your doctor signs a letter saying you have less than 6 months to live, which is not the case for most of us. Hope this helps a little. Keep in touch if you decide to file and how it is going. I will post as soon as I get a court date, which could take a couple of years.
Hi Kathy, I was just reading your reply & I really wish things were that way with disability claims in the state if Indiana. I would certainly be a candidate. Im currently in the middle of my disability claim. A year ago last May I had three bleeds at one time, had a 2 pint transfusion. They try to drag every little thing they can out of you. Example, when you shower, when you do anything & how you do it. It's crazy. But, Im praying I get accepted because I cannot work any longer with this disease. All of the time id have to take off for appointments & procedures, plus, the written Dr restrictions. I don't know what I'll do if they do not accept me.
I know it is hard. It is because so few understand this disease. But the more of us that truly need the disability we paid into all our working lives Paves the way for those who will be diagnosed behind us. The two bleeds in the state of Colorado was only the beginning. Basically for PBC you have to be on a transplant list with less than six months to live. That's why my attorney isn't asking for disability based on the disease but proving the employer can't provide an environment where I can successfully work for him. I left work 2 years ago. I have no spouse for a second income in the household. But I was so ill I was vomiting several times a day, brain fog was endangering my performance, I was passing out at work, had severe liver pain, and had become and expert hiding it all. It was either quite or be taken by ambulance to the hospital.
Amazingly we find out how much we don't need. How much you can ration, i.e. I only have one led light on at a time. In the winter my heat is set to 50F, no air in the summer. Even toilet paper, rationed. I eat from my garden and my protein comes from my chicken eggs. I use a couple of different steam cleaning machines so I don't buy cleaners. My laundry soap is baking soda. I hang dry my clothes. There is too much to go into it all hear. But the cool thing is the lack of dollars actually simplified my life, I have less exposures to toxins and I eat healthier. This might be how I survived when there was no other medicine than Urso (which I am allergic to).
Yes, SSND process is hideous. A zillion questions asked a zillion different ways (to see if your lying). And the challenge with PBC is a lot can be intermittent with flare ups. So the docs don't want to say "she can't lift more than 25 lbs. etc. You are absolutely right that we need a lot of time off for medical appointments and sometimes we need it strait away where we can't give notice, i.e. we have to go to the ER.
I was told 70% of cases are lost the first go round and that I might loose at least twice first before winning even though I have multiple medical issues over and beyond PBC. I was told NOT to give up. I had an excellent case, and NOT to get discouraged. Easier said then done right. I have been waiting a year for a court case after loosing the first round and my appeal, even though the SSND doctor they sent me to, recommended I be awarded full benefits, I was still denied. You just keep after it because if we give up (not that all people with PBC can't work ), what will happen to those really sick people with PBC that come after us. As a group we are powering up the research for new treatments, we also have to educate certain groups how disabling PBC can be to government agencies. They just don't have the data. We are the data from which SSND will be educated.
And then there are the mistakes I made along the way. Like if you haven't filed under the FMLA you need to do so. It won't pay you when you run out of sick or paid leave. But it makes it a lot harder to fire you for taking time off of work for medical appointments when you run out of leave. FMLA protects you in your job.
Ring my bell anytime you get discouraged, or are feeling overwhelmed trying to fight your case while feeling sick and exhausted, or scared how your finances will hold out. Been there! I am a good listener, and a positive fighter. I am in your corner Stay Strong!
Thank you so so much Kathy!!! This is actually my third time applying for disability. I tried twice in 2014. Praying that the third time is the charm🙏. My fatigue was of the charts then, still is bad on most days. I would literally fall asleep in my hydraulic chair in the salon I worked for, while waiting on my clients. So far the state has been moving right along with all of the appointments & processing my data.
I won my disability case 3 years ago. Here they have a voc rehab person in court with you who makes the decision of weather or not you can work. She said that 1 because of my age it would be hard for me to get hired ( i am now 58) and because of pain i can't sit or stand for more than 15 minutes at a time and because my doctor wrote a prescription because of the fatigue to take a nap everyday from 2 to 4. As q8cooper said. The accommodations they would have to make no one will hire me. Make sure to know your symptions and what you can not do so your lawyer knows better what to fight with. Write down everything that would make you miss work and if you have lost a job because of missing work. Over 50 has different rules because at that age you become a liability to employers, then the accommadations they have to make is not feasible. Good luck.
Are you taking Urso? I don't suffer from brain fog myself, but my consultant said that Urso has made an amazing difference in his patients with brain fog.
If you are taking Urso, it might help to ask if any of the new drugs, - taken in conjunction with the Urso - would help with the fatigue. Otherwise, the ideas I have picked up via this site and the 'PBC foundation's' own site (link at top of page) ... and of course 'Bear Facts' ... are ... boring old: diet and exercise.
Try to work around the fatigue, and slowly, a few metres, or skips, or exercises, yoga moves ... (etc) at a time, try to build an exercise regime that you love ... But, only do it when you feel okay, and rest when the fatigue is bad. If you read Colleen's account of learning to cycle and walk, when she could, and gradually do more and more, it is a model of how to try to accustom your body to its depletion, while also building up its ability to fight back. Ditto diet, slowly and carefully, don't cut all the things you love but do try to slowly reduce the bad things, especially too much fat. Meals 'small and often' is also suggested by many, as there is a regular supply of nutrients and energy, but not the big meals: where digestion itself can actually sap our energy .
Also, have you been checked for all your vitamin and mineral levels?? Because of the liver's / gall bladder's inability to keep the release of bile normal, we struggle to digest fats, which can cause nausea etc. Also, this means that Vit D is not absorbed properly, and this can then lead to a decrease in calcium absorption, as vit D is needed for that. Once vits and minerals go out of kilter, all sorts of strange effects can result, so ask to have them checked.
Plus ... it might be worth asking to try Amitryptiline. It was originally produced as an antidepresseent - in massive doses - but now is often used to help sleep, and for the relaxation of muscles. When I was having horrendous hot flushes in the menopause, so bad that I was not getting any sleep - plus awful migraines resulting from the lack of sleep - my GP gave me 10mg tablets of amitriptyline. She told me to take as little as needed - 1/2 a tab, 1/3, 1/4 ... dust ..! - in order to get a good night's sleep. It was marvellous for sleep, but also for a general fatigue. It is mainly used, now, for sleep problems and for fibromyalgia, as it helps the muscle fibres in the blood vessels to relax: so this may help if your fatigue is caused by mild stress from all your issues, or because you are tense with the whole seemingly insoluble situation.
I don't know if any of this will help, and sorry if it seems a bit off at a tangent, but they are all things that have helped me.
So sorry you are going through hell! I understand as I was very ill with PBC and misdiagnosed for years, finally feeling stable on the URSO now. Because it's a know symptom of PBC I would focus on the fatigue and brain fog with your disability case then have your doctor focus on those symptoms and how it would be impossible to work in such a poor physical state. Then add your other symptoms on top I think you have a good case, in US they pay out for chronic pain and depression if you can't work and your doctor documents these are real in your diagnosis.
I get very bad fatigue when I do I rest and do very little those days and ask for help. Try to do short walks outside and be outdoors even if it's just sitting makes me feel better. Eat healthy as you can and do some meditation there are some free lessons on YouTube. Hang in there and stay positive you will be alright. Let us know how you are doing along your journey. Antidepressants do help some people get through a rough patch and only see a liver doctor for PBC or any liver disease.
The only thing I would add to what I have read here is the hashimotos might be causing more of your issues than your liver. I have that too and has thyroid cancer so I have no thyroid on top of my PBC. Your thyroid medicine if you take it and it sounds like you should needs looked at. All of those symptoms can be from hypothyroidism. Not all may be your PBC.
You are really going through it. I too have had many symptoms dismissed by my Dr. My only re assurance has been this site and knowing that I am not alone in this fight.
I too have thyroid disease and also found that taking the Urso affected my Synthroid dose.
I had to up my Synthroid dosage for the first time in 30 years.
I still have PBC symptoms but not half as bad.
The best to you, stay strong, and find another doctor.
Lorraine, So good to see you say this regarding synthroid-- Me too! after 7 years on same dosage I had to increase up 3 times after I started URSO. When I ask the dr. She tells me there's no "known" interaction with URSO -- but that was the only change.
So could it be the disease itself (PBC) disrupting synthroid processing... who knows! My levels have been fine now but will see what numbers are in the Fall.
I am so sorry to read all that you are going through- all that you cope with. And I truly understand the grief with losing ability to do what we once could do.. the grief is real. I also know that blank stare that some drs. can give when you tell them how the fatigue or other symptoms are effecting
I hope you are able to get whatever help is possible with disability. And I hope you can get some kind of symptom relief.
In the beginning of my pbc my primary do diagnosed it and sent me to a gastroenterologist and he put me on urso. He kept telling me that there was no pain or fatigue associated with pbc. Really just blue me off when i talked about it. Then he retired and i got a new one. He said i did not have pbc and that i was just constipated. My primary started to question herself. She is an excellent doctor. After all that my primary sent me to Columbia Missouri for a third opinion. They confirmed that i do have it. It's considered rare but when you check sites like this there are a lot of people who are living with it. There are a lot of doctors though who don't really know anything about it. I am my primarys first patient and now she has another who is not as far along. I have stayed with the columbia doctors and recieve excellent care. Dont give up. You will find the right doctor if you keep insisting. I know its frustrating and what you are feeling is real. Insist to the doctors that you want a pbc specialist. You are going through so many things. You poor child my heart aces for you. Our children are grown but i still miss doing stuff with them and the grandkids cause i have to leave early cause i don't feel good. I've had people call me lazy cause i am always tired. My husband use to think i was just depressed until he got a better understanding of pbc. I am on lactulose for the fog. Our liver is not able to filter the way it is supposed to and the toxins, especially the ammonia is what is messing with the brain. I also take xifaxin. I hope this has helped you and i don't mean to be so long winded but i understand the beginning frustration. I was scarred, frustrated, cried (which i don't cry easily) got depressed and wanted to give up. I finally put in Gods hands and things started to happen.
I know a gal that got disability for her anxiety.. not that it isn't a difficult emotional hurdle. But it doesn't compare to an advanced liver disease. Smh!
I'm sorry that I didn't see this earlier. Is it possible that you're vit B12 deficient? Not the serum level but the functioning or tissue level? I was. I have intramuscular shots of hydroxycobalamin now and the brain fog symptoms are massively reduced. In 3 days I went from not knowing where I put down a newspaper when I couldn't do any of the crossword, to picking the paper up on my way to the bathroom and completing the crossword, mentally, no pen, in a very few minutes, maybe 6. If I have clarity, I have better memory. I hope you have some resolution by now to your loss, but I post this in hope that it may be use to you. Best wishes
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