By way of introduction
Hello. I’m new here but not new to MS. I’m one of those who also has a bunch of other diagnoses, of the sort which often along with MS. Most of them predated it. Bipolar disorder, narcolepsy, fibromyalgia, psoriatic arthritis. My mobility is not noticeably affected, although I know what’ll happen if I try walking too fast or too far. For me, it’s all the invisible symptoms: fatigue; cognitive impairment; significant bladder and bowel problems; muscle weakness; spasticity. Tomorrow, I’m having a suprapubic catheter fitted. I hope it’ll be a vast improvement on the indwelling sort I have at the moment. I live on a farm and for over a month now I haven’t been able to go near the animals for fear of them knocking it out. Ouch. I admit that I have been telling everyone I know about it. Finally, after 25 years of being looked at sceptically - “She’s not ill, she’s just lazy” - I have something to prove to them that I’m not making it up. I feel guilty saying that, given the obvious impairments and disabilities so many of you have to contend with. I hope you understand what I mean.
Finally, I hope you don’t mind me mentioning the latest, and so far most bizarre, symptom. This may be TMI, so look away if you are of a sensitive disposition: my perianal muscles, whatever they are called, have gone kinda numb yet simultaneously spasm. It feels like something is wrenching open everything “down below”, and sure enough, it is! It feels like I have ridden 100 miles on an extremely uncomfortable bike saddle definitely not designed for women. It is distracting, to say the least. My family and friends look at me like I’m mad when I try to explain it. Am I alone? I suspect not, sadly. My legs and feet have also gone half-numb half hyper-sensitive, feel as if they have swollen (they haven’t) and are intermittently cold and wet. Sometimes that is because they are, courtesy of a knocked leg bag valve, but mostly not. Never a dull moment from the waist down at the mo.
I have never sought out the support of others with similar conditions before. Whether it’s age (I’m 56) or my increasing sense of vulnerability, I don’t know, but finding this site is a comfort.
Welcome to the site @Kate56 . I am glad that we are providing some reassurance for you!
Hello. I understand where you are coming from for sure. I’ve been in pain my whole life and I have fibromyalgia and scoliosis and a bunch more junk!! Severe depression… etc. I am almost 46. It’s super hard but I try and laugh everyday… I try and enjoy my cats and birdwatching. Anyways I am Amos and I’m in Texas and I am here for you