I feel so alone..I really need some guidance.

[DiseaseLimbo]

Hi everyone! My name is Alison. I'm 5'1", weigh 95lbs and I'm 27 years old. I've had Crohn's disease for 20 years now. I also had the pleasure of having Endometriosis in my bladder and outside my uterus on my intestines, etc. I had a total hysterectomy when I was 22 due to this. I also have been diagnosed with Bipolar 2, Depression, GAD, ADHD, PTSD (all the medical stuff) and BPD. I feel like I should also mention I have GERD, Scoliosis and Pelvic Floor Dysfunction. I've had my Cecum and Appendix  removed when I was 12 due to the Crohn's (pentasa pills were lodged in my intestinal wall undisolved and caused a blockage), many kidney stone removals, gallbladder removed, and many exploratory laps. I've been on two TNF drugs: Remicade and Cimzia. Methotrexate was the last drug I was on and it put me in remission for 4 years now. When I was 22, I also had pseudomonis in my kidney pretty bad where I went septic after having a kidney stone removed. I had shingles two years ago as well and have been diagnosed with PHN because of it. Lupus and Scleroderma run in my family. Alright now onto the question...for years on and off I would get hit with major fatigue, nausea, dizziness, and low grade fevers. I've had mouth and nose ulcers as well. Every time we would just assume it was the Crohn's disease until my Crohn's went into remission 4 years ago. Now whenever this happens they scope me from top to bottom and nothing ever shows up. I've been tested for MS because I was having memory issues, and I couldn't think of words and form sentences. I was having difficulty with numbness and tingling in my fingers. I got a MRI and that was negative. I was told it was all in my head and to "stop thinking about my body so much". I am originally from Florida and last year I moved to Canada with hope of not having to pay another $14,000 medical bill (after insurance). Now I'm experience more symptoms with still no diagnosis. I was diagnosed with Raynaud's Phenomenon in November of last year and was sent to a Rheumatologist. He said it was probably drug induced Lupus even though I wasn't on any medication and he couldn't tell me what "drug" would be causing this. He sent me for blood work because I also have had "sun rashes" that were unexplained by dermatologists for two years, dry eyes, joint pain, TMJ, gums bleed, etc. Blood work came back negative and he told me he would see me in 4 months offering me no help from the fatigue, nausea ( I could not get out of my bed or sit up without feeling like I was going to faint or vomit) and also the Raynaud's. That ended up passing after 3 weeks of not being able to function and having no help other than stuffing Zofran in my mouth and not waking up for days to eat or even pee). The Raynaud's continued. I got more mouth ulcers on my tongue and lip and again scoped for my Crohn's and found that it was not active. Flash forward to last week...Last week I started having a pain on my inner arm in the space between my elbow and wrist. It felt like my skin had been rubbed against repeatedly and was just really irritated or tender (like when you have the flu). I went to the doctor and he said to look out for the shingles rash again and put me on Celebrex. The Celebrex worked for a couple of days and then it got worse. Much much worse. My joints were feeling like they had Charlie Horses inside the bones. My left ankle, knee, hip, and wrist were really cramping. He told me to stop the Celebrex. The pain subsided a little but my arm pain was back. Wednesday I was in the sun all day and then Thursday all hell broke loose. My arm started to REALLY hurt. I couldn't touch my skin, move my fingers, or even hold my phone in that hand. I also had what looked like a vein webbing on my arm. I went to the hospital and she said it was "too complex" for her to diagnose. She didn't do an xray, run tests, ask for my allergies or ask for my surgery history. The next day, I saw my doctor and he ran blood work and that came back negative again. Now he's sending me to a sports medicine doctor but I feel like I'm about to spiral off course and that I won't find my diagnosis there either. I have had this arm pain in the past just never this extreme...it's usually just that tender irritated skin feeling and then on the inside it's burning annoying pain. My back on my right side under my rib REALLY hurts and that's where my shingles was. I'm not sure what I should do next and any advice would be greatly appreciated!
Alison

[ConfirmedRachel]

Hi Alison,
I saw you'd posted under several headings and are clearly feeling very low just now - and no wonder!
You describe a complex set of symptoms and illnesses - for that I send you my sympathy.
I'm not trained in medicine and although I do have MS, Raynauds, Asthma and various allergies - none connected to my knowledge, I certainly haven't had the miserable time you've had for so many years, poor you.

I can't offer any specific medical advice or answers, but I do have some 'brain' knowledge, how we tick etc and would encourage you to find a friendly local group of people - doesn't matter doing what, could be art, books, gardening, cinema, quizzes or sports - anything. The support you'll gain from having a common interest might just help you move from the feelings of being alone to those of support. Hopefully something new/revisited old pastime to enjoy.

It is unlikely that anyone will share your particular set of circumstances or symptoms, but by sharing a common interest in an unconnected area, you might possibly find some peace for your inner self which will help you cope more easily with what you have to bear.

I truly hope you find resolution for both your illnesses and loneliness - virtual chatting on here is always available. Feel free to keep in touch.
Nx