Pain all over

[Shulsey]

Yup, I hurt all over!!! Cannot sit for too long because I get so stiff & painful that I cannot get out of my seat. I hurt the more I stand & the bottoms of my feet constantly feel extremely bruised. It seems to be worse in the morning as Im getting out of bed. It takes everything I have to get up & out of bed. Then it takes even more to move across the floor just to get from point a to point b. Im so frustrated & tired of feeling this way. I seen a RA Dr who said that this isn't the case. Tomorrow I see a neurologist to find out if I have some sort of nerve damage. My GP feels that this is not the case but we shall see. She went ahead & wrote a script for percoset, which was okayed by my hep since Im already at cirrhosis stage ( there's no change that), to take the edge off until someone gets something figured out. I pray this is straightened out soon because feeling this way on a daily basis is really debilitating & depressing. I've always been one who can take a lot & not complain one bit. But, this, this thing Im going through now, it's kicking my ass!!!!

[Ktltel]

Shulsey,

Man, you make me cry for you. Have you tried functional medicine doctors. They treat the root cause of the AI and not just the symptoms? Private message me. Send me your email. I'd like to send you a video on cirrhosis that I saw.

I'm in the states, Kansas. Where are you? I can't remember.

Stella

[Shulsey in reply to Ktltel]

Im in Southern Indiana, just a small town girl😊. I will be due to message you this afternoon. I must get my kiddo up & moving. Ty for your input, Im looking forward to seeing this video. & I've never heard of functional medicine Dr

[Ktltel in reply to Shulsey]

Functional medicine doctors are M. D.'s who take a different approach to treating AI's. There is the UltraWellness Center in Ohio. That would be the closest to you.

The video is of Dr. Burt Berkson who's office is in New Mexico. He has helped several patients with cirrhosis. This 30 min. video covers AI's, cancer, and cirrhosis. Worth checking out. Google "Healing Cirrhosis Dr. Burt Berkson" for one woman's story with her husband.

When I hear from you I'll email the link to the video where he speaks at a seminar about his protocol and how mainstream doctors reacted to it. It's interesting.

Stella

[Hidden]

I'm so sorry. I'm wondering if you can go on the live donor list do to this disease affecting your quality of life.

[Shulsey in reply to Hidden]

I spoke with my hep about looking for a live donor & he thinks it would be in my best interest to wait for a complete transplant. Trust me, it had crossed my mind more than anything.

[butterflyEi]

Hi Shulsey

Sorry to read you are struggling so badly, I hope you can find an answer soon. Would a light massage help with the stiffness?

best wishes

[Shulsey in reply to butterflyEi]

Most of the stiffness is towards the end of the day & first thing in the morning. I have a friend who has "magic hands" , she's a massage therapist. I might give her a call.

[Lisa15]

Hi Shulsey

I know how you feel with the pain and stiffness. I have osteoarthritis in all joints and herniated discs in neck and back. Which causes nerve pain also. I can't stand, walk or even sit for long without pain. It is horrible to put shoes on and tie them. ( I wear slip ons mostly now) I haven't found out why my feet or sore and tender when I walk. I have been tested for RA but I don't have it. I take tramadol for the OA and lots of soaking in a hot tub. This on top of the itch and fatigue from PBC I don't leave the house much. It's horrible and I can understand how you must be feeling. I hope you get some answers and help soon. Please keep me posted. I would really like to know what you find out about the feet pain. Take care

Lisa

[Shulsey in reply to Lisa15]

My mother has OA. I wonder if that increases the chances for me. Amy thoughts Lisa15?

[Lisa15 in reply to Shulsey]

Yes. I was told that it was hereditary. I think it is called primary osteoarthritis.

Best wishes.

Lisa

[Ohio82]

Is it your back hurts or is it everything. I have arthritis and herniated disk. At this points it's back pain more than anything else. I also take tramadoll when needed as it does not go thru the liver. It's terrible to be in pai, so sorry.

[Shulsey in reply to Ohio82]

It's all over. I basically have to sit up in bed, if I need to flip over or anything. So the longer Im in one position, the more difficult it is to move.

[uitlander]

Hi The pain and stiffness was the reason I first went to the doctor.

I was on Rituximab trails for PBC and for the time the infusion was active I had my life back it was great.

I have reached the stage of dividing my pain into types

- bone pain ( Ursofalk helps remove that)

- a wandering joint pain - only rituximab helped - warm bath with very long soak some help and weather and humidity really affect this

pain linked to stiffness - moving helps but is such a huge effort also affected by temp ( idea range is in 20- 27 degrees celsuis - Pilatus where you are mostly off your feet lying down has helped get me moving with more balanced freer movment

Muscle pain - hot bath , deep heat ( i think because then there is more blood flow to remove the toxins like lactic acid out of the muscles) Working within my limits stretching them by a minute or two more movement has help me going from a few minutes of movement to current ceiling of an hour of gentle walking on a good day

Fatigue pain - Amitriptyline along with a bath helps getting to sleep. If I wake and am still sore just lying in bed then go back to sleep and get as much sleep as body needs to stop being sore. Before I started Pilatus it had reached a stage were even sitting a couple of hours in a comfy chair resulted in fatigued back muscles.

Use of pacing stratgeies

For me the frustrating thing is that the pain and stiffness apparently doesn't correlate with one's liver function. My liver function is abnormal but at the level they try to get people wit severe liver function to but my body is just in severe protest.

Don't know if my ramblings have helped at all but I have over 5 years managed to go from 20 yds extremely painful walking to gentle walking for an hour on good days ( i.e not too hot/cold and my not being tired)

Haven't really got to grips with the stiffness after being sitted so do get out of the car looking like a 99yr old. The longer I have been seated the worse it is.