Pain

[SharonM69]

Hello

I have been in pain since last year, my whole body aches, I cannot walk properly in the morning because of leg and foot pain, my hands are swollen. My hand goes into a painful spasm, I also have neck shoulder and back pain, yesterday I overdid it with housework and gardening today I can hardly walk.

My immuglobins are raised too.

Has anyone else experienced this and know what it is?

My mum died of scleroderma I'm terrified it could be this.

I am on urso 1500mg per day.

[butterflyEi]

Hi SharonM69

I am so sorry to read your post. Being in pain truly makes our lives hard to live. I understand that the medical profession are beginning to recognise that people with PBC may suffer with joint and bone pain but what you are describing sounds something different. Do you know if you are vitamin D or vitamin B12 deficient, both of these vitamins are important for keeping our systems healthy. If I may I would strongly suggest a visit to your GP - if that is difficult just now as COVID still seems to be impacting on the services GPs are providing - then a telephone consultation asking for a full blood test including thyroid (which is known to be an auto immune often associated with PBC) and those vitamins which can be discussed with the GP when the results are in. Whilst waiting write down any questions that come to mind and ask for a print out of the blood test results so that you can highlight any markers that are raised and get an explanation from the GP.

As you know that your immuglobins are raised have you recently spoken with your consultant? If you have were your other blood levels raised?

Sometimes pain in our bodies can also be triggered by what we eat. I know that oranges or tomatoes will trigger pain in my joints. Have you ever kept a food diary? These can be helpful in isolating food triggers.

Hope some of this is helpful, best wishes

[Charlie-Farley]

If you do go to doc ask for thyroid function test too. An under active thyroid can lead to vitamin deficiencies and as butterflyEi says can cause these symptoms. When I was hypo I had trouble with hand and feet - lots if cramps in legs etc. If you do get a thyroid test with vitamins from doctors do join thyroid UK on health unlocked. Extremely good advice given and they literally saved me. NHS test is pretty bald compared to a private Thyroid function test, but for most is just about sufficient for diagnosis.

Food diary is a brilliant idea too I did this for my route back to health with an under active thyroid 😊👍

[mrspeffer2]

MORNING....I can empathize with you about body aches and pains. The other ladies have great suggestions for you to start with. Another thought....I get hand spasms if my calcium is low, leg and foot pain when magnesium is low. It really hurts! Just last night I realized I had not had enough water during the day and sure enough, side of the calf and foot/toe spasms were starting. I took some magnesium and an electrolyte drink and was able to stop the spasm within a few minutes. I mostly find that a quick fix is to balance electrolytes. I live in the desert and non optimal hydration will give you all of your symptoms too. Hope this helpsBe Well...

[June9961]

Hi, I feel for you because in my 20 years of having PBC, apart from severe fatigue, body pains are my main symptom. I used to call it broken body syndrome and at times I felt like a bent over really old lady who could barely walk. Nothing seemed to help until I forced myself to take some gentle exercise. I also drink lots of water and believe they both help. I now go out cycling and at 67 have taken up walking football. I feel fitter than I ever have and the pains are now more manageable even though I also have arthritis. ☺️

[butterflyEi]

message for June9961 - wow walking football sounds great fun, never heard of it before.

[Texasliz]

I had overall body aches and pains for decades, and was diagnosed with Fibromyalgia before much was known about it. When I changed my diet, all pains were gone within less than a week and they only return if I eat a wrong food. For me, eating clean, and without veggies was the answer I had searched for most of my adult life.