Hello everyone
May I ask if anyone else has limited mobility and by lateral leg pain? (Mainly calves) I’m housebound and still being medically investigated. My problems started with sudden profuse diarrhea and then the leg pains started. My diet is so restricted now as most foods cause a reaction of some sort but in general terms the worse my gut the worse my legs and sometimes it’s left me crawling. Am I the only one?
What medications are you on? By chance have you had a stool test done to check for infection & other pathogens, if not I would request one. I've not ever heard of anyone having the leg issues you described. A part of me wonders if your electrolytes are out of balance due to the diarrhea. Hopefully the dr can get this sorted out soon.
Hi SuzyYes, had three comprehensive stool test now as this has been progressing for five years and Ican now only eat root veg and meat . Any other foods cause a whole host of symptoms including burning mouth, rashes, hair loss, insomnia, racing heart, flushing and the list goes on. I have no primary care as the doctors are not sympathetic, eve to a point I feel unwelcome to contact them so am now having to go privately. I’ve never been ill before (I’m now fifty) and it’s got so bad I’ve had to shut my business so I’ve no income and been housebound for a year due to lack of mobility even down to not being able to drive. It’s a nightmare so I’m posting far and wide hoping for a lightbulb moment from someone who’s suffered or seen it before x
What medications are you on?
None at this time as I’m still a mystery and no one knows what to do
If I am reading your post correctly, you do not have crohns disease or UC? My only other thought would be to see if you can get seen at a university/teaching hospital for an evaluation.
I don’t know Suzy, waiting on a colonoscopy appointment at this time
Have you looked into mast cell activation disorder?
Hi Raven
Yes just been diagnosed with it and am on the Gupta brain retraining program to calm my systems down so I can start medication also tested positive Ford mold 👍
Ahh interesting, I thought it could have been that. I take it that was privately? So hard to get anyone to acknowledge it on the NHS.
Yes, the arrogant and ignorant of the nhs called me a ‘medical abnormality’ and advised that I should except my condition and stop looking.........🤬
Sounds familiar! So frustrating when you know your body and you know it’s not right.
I suffered from leg cramps when I got dehydrated. If this is the case with you, try drinking Dioralite it contains electrolites. Eating bananas is also a good idea as they contain magnesium ( or is it potassium). My IBD nurse recommended this and it helped. Hope you find this tip useful.
Thank you for your idea but Unfortunately for me it’s not that simple. Banana makes it worse and I drink plenty of water.
I do get tummy cramps and achy legs been worse recently as I think I am having a flare but mainly at night when I have to get up
I have Crohn's, when I have a flare with diarrhoea I do get very weak, need Dioralyte and pureed foods. Also my doctor checked my bloods and discovered I needed B12 and VitD supplements. I do get very weak, sometimes standing for long enough to scramble eggs is too much.
Yes, I do. The leg pain is now more troublesome than the digestive aspects of Crohn’s.
Hi Morganalefaye
Same here.
Can I ask how the pains started and what they felt like?
That’s very difficult to answer in a short space. When one is in the early stages of Crohn’s Disease it ‘acts’ in very different ways to the way it behaves in the later stages, when the musculo-skeletal aspects of the disease become more prominent. I suffered terribly from cramp in the early days, but of course you can also have reactive arthritis, connective tissue inflammation, etc. I suspect if your pain is in your calves it’s a type of cramp, suggesting your electrolytes are unbalanced, very common if you have very bad diarrhoea.
Unfortunately not, electric shocks and painful fizzing sensation. Unfortunately at this time I can’t take any supplements or add to my diet due to extreme sensitivity so I’m rather in a corner
Post COVID UC flare - Mezavant probs
Can IBD be spotted still on a colonoscopy when not in a flare
UC flare up
Exercise during a flare up
Colonoscopy tomorrow - very scared of test and result.
