Finally an answer after years of suffering? Maybe?
My story is long and I wish I cold find sone one who has a similar story. After several years of problems and no reason to why my health is so bad, my doctor is pretty positive I have RA. I see the rheumatologist the 27th of this month and I am nervous. I am pretty upset cause over the last 12 to 13 years, I have constantly been to doctors with one health problem after another and no one diagnosed me. I am not sure how long I have had it, but when I was 13, I started breaking out and discovered I had hidredenitis suppertivia.
At 15 my back flared up with warts all over it but I got ride of those with iodine. It was so bizarre. I got pregnant at 17 and had a very hard pregnancy. There was something wrong but they couldn’t figure it out and when I had her she was very deformed and died at 5 months of age. She had more normal cells than abnormal and looked like a baby with beckwith weideman syndrome but her chromosome #11 was normal and they couldn’t figure out what happened until 8 months after she died. She had mosaic triplody but a very rare case of it and she shouldn’t have lived, especially for 5 months. She would be 19. Then I have 3 healthy kids; 17, 16 and 15 years old. I had a micarriage in between my 2 youngest children. When I was 19, I started passing kidney stones and my face flared up and had gotten infatigo, foin oUT in have seborric dermatiis and to this date I use prescription shampoo and steroid creams. At 22 I developed restless leg syndrome, magnesium has helped but it’s still very bad, excruciating sonme nights. I always had a weight issue but when I was 25 I blew up to 264 pds. I averaged 170-180, and I was only 5 ft 2.5 inches tall. Doctors finally figured out I was insulin resistant. I also had highblood pressure and horrible knee pain from the weight, so the doctor referred me to a doctor for gastric bypass, so I had that when I was 26. 4 months after that surgery I had to get my gallbladder took out, don’t know why he left it.
I adjusted to my new life easy dropping 140 pds in 10 months, and to this day 11 years later I still maintain 140 pds. But it never corrected my health problems with my insulin and blood pressure. My knee did get better but I still always had some sort of pain in my right leg since that weight gain. A year later, when I was 27, I couldn’t walk on my heel of my right foot. I went to dr and I had plantar facitiis and he gave me a cortisone shot which helped alot but I was having pain at the ball of my foot and where I was walking on the ball of my foot it had displaced and still is to the date, it’s hard to tape my toes it everyday. That’s when I started having a lot of pain all the time and not long after that shot I was shaving and noticed a numb place on my right ankle and looked and it was swollen, the swelling never went away. Its mostly on the right side of my ankle. I even had it ultrasound but no answers after all these years why I had a numb swollen ankle. 28 my breast started hurting all the time and there were painful lumps in them. Went to doctor and it was fibrocyctic breast disease and I still suffer from that. It feels like someone’s got a match held on my nipples, even water from the shower hurts to the touch. Then I started having serious female problems at 32 and had to have a hysterectomy, I had ovarian cyst, fibroid tumors, bacterial vaginosis andendometrosis. I also had an unidentified object in my fallopian tube. It was a tubal pregnancy and the baby died sitting in my tube. I had my tubes tied when I had my last baby at 22. I remembered feeling pregnant a year prior and I had 6 pregnancy test come positive but then it was like it just went away so I just figured it was a hormonal issue, again bizzare. Also when I found out I had to have a hysterectomy I went to the bathroom, had no pain, it was bedtime and all the sudden it hurt very bad to pee and I thought it was a kidney stone, but it wasn’t. I was urinating nothing but blood with blood clots and I went to the ER and I had a severe UTI and they said I should have been hurting for weeks, idk why I didn’t, I always have had an overactive bladder. I peed once an hour for years. I kept my right ovary and just found out 5 months ago my endometrosis grew back and with a vengence, the doctor didn’t tell me it would or I would have had him take it, he also left my cervix without telling me. I have been anemoc all my life as well as having iron deficiencies, since gastric bypass I still have those issues plus B-12, potassium and b complex deficiencies so I am on several vitamins. At 34 I started hurting like crazy where my pouch is and having stomach pain and issues. Went to dr and had an endoscopy and I had stomach ulcers, acid reflux, a hiatal hernia and IBS, more medicine and still suffer. I was a secretary and for a few years I had pain in my right hand that radiated to my neck, and my middle finger started locking up on me and I looked like I was shooting everyone a bird, lol, went to the dr and I had corpal tunnel as well as cubital tunnel syndrome. I also have it in my left wrist and elbow but not bad enough to worry about surgery, so at 35 when I was able to take off work, which I quit after 7 years cause it was so hard to sit all day, my abdomen, right leg, right foot, neck etc always hurt and everyone thought I was a hypochondriac, made me so mad! My hand hurt worst since the surgery and I was put on Cymbalta and tramadol, didn’t know about drug interactions and had a grandmal seizure 6 months after this surgery while I was cooking breakfast. I don’t remember anything but waking up in an ambulance scared to death. I had several test and nothing showed up so it had to be a drug interaction. I just started going down hill at 35 after that surgery.
Here is 2 years later and I have a lot more going on, as well as still suffering from everything. I still pass kidney stones. I have one in my bladder now and I am on birth control pills for my endometrisos. I went to another orthopedic doctor since my hand still hurt me very bad, still radiating to my neck, the problem was in my neck, I was diagnosed with cervical disc degeneration and a ruptured disc at c5/c6. Not having surgery no time soon for that, but I have no reason to have a ruptured disc, and some reason I was only 5 ft 1.5, an inch shorter, bizarre. He wanted me on anti inflammatories but I can’t take anything like that due to my stomach ulcers. My legs were giving me fits, and my feet always hurt and I noticed that my feet were turned blood red when I was on them alot. One day I took my daughter to the doctor and while waiting in the waiting room, I didn’t know my foot went to sleep, it was dead if u ask me. No sensation, so when I stood up to take a step I face planted. In my mind my foot took the step. OMG, me and my daughter laughed so hard. Inside I knew that wasn’t normal but I didn’t want my daughter worrying, and so my orthopedic doctor referred me to a vascular doctor. I also have severe restless leg syndrome. I had test run and I had chronic venous insufficiency, venous stasis and raynauds disease. I knew I stayed cold but never paid attention to my hands and feet til I was diagnose but I have secondary raynauds and I have 1 to 3 flare ups daily, especially when I take baths. I don’t have to have a trigger that causes it. The doctor burned a vein out of each of my legs to wake up my good veins to work and circulate better. When I had the 1st vein burned out Jan 2015, I was using my left leg more and developed plantar facitiis in it. I couldn’t use my right leg because I developed phelbitis and couldn’t walk on left heel, was awful. I was scare do get my left leg done, but had to in Feb 2015. I didn’t develop phelbitis and my heel eventually eased off. It’s flared up 2 more times since then lasting a couple of weeks. March 2015, I started having trouble going to the bathroom and when I did it hurt. I was having the urge and couldn’t go. I saw blood for a few days and then the blood stopped but I still had issues, assuming it was a UTI or stones, I went to a urologist and I had blood in urine even thought u couldn’t see it but no infection, so he wasn’t sure and did a cystoscopy. Nothing showed up but I was still having symptoms and went back to him and he treated me like I was overacting. Told me some people just have blood in there urine for no reason. I couldn’t wear jeans for weeks because I was so swollen. I went to a different urologist this past July and I had no blood in my urine but I had a bacteria called streptococcus. Took the antibiotics but still had symptoms, but not all the time as before, just comes and goes, it’s weird. He diagnosed me with bladder pain syndrome and my bladder was very inflammed, sexual intercourse hurt awful so something had to be done! LOL, so the doctor has me on medicine for bladder inflammation and thank god it helps, sorry I kinda have a morbid sense of humor, it helps me cope. Me and my husband had to learn to catherize me and that’s just depressing. I have only been so bad to do it once, had to have my husband help me, so embarressing.
My vision is crazy. I had a new prescription and I got to where I couldn’t wear my glasses, sometimes I can’t go without them, like they change and I am having migraines. I have numbness in my fingers and toes, feet, ankles and calves. I always have pain from the knees down and I had done some research and saw I could possibly have amputations from the vascular issues so I went to see mydoctor, and she was using terms I didnt know. So I said to her, So your telling me I could lose a toe? And she said I was at risk of loosing from my knee down and I lost it. It seems that my veins are so timely from the knee down that the doctor won’t even touch me to out stints in. I don’t hardly drive because my feet go numb and it hurts my neck holding the steering wheel, I can’t hardly turn my head either to see what’s in my blind spots. I feel ok in the mornings but as the day goes on even if I don’t do anything I hurt, somehow, somewhere. This is very hard because I am ocd about cleaning my house and wearing make up and the simple things are hard somedays. I even got my eyebrows tattooed on and thinking about my eyeliner. I know the small things but I look young and everyone thinks I’m full of it with my health because of my looks. Looks can be deceiving. I don’t do anything fun anymore other than doctor appts so if I enjoy my makeup let me have it lol.
I am seeing 9 doctors. They recently did a nerve conduction study on my legs because my new pain doctor thinks I have neuropathy, and my hands go very numb thru the night so he gave me a brace for each wrist to sleep in, a tens 7000 unit, pain cream and 3 other scripts. I take 26 pills a day for all my issues, 16 are prescriptions. I see my rheumatologist on the 27th to see if I have RA. I am pretry sure after my research, and my doctor diagnosed me with my vascular issues just 5 minutes after seeing me for the 1st time and she is the one who has been trying to get me to the RA dr, he’s pretty booked. I recently shrunk another inch, only 5 ft 1 now so she ordered a bone density test. I can’t seem to find anyone who has as many problems as me so I am concerned, if I have RA too, which has been the culprit all these years but not treated for, if I have it, what’s my prognosis? I was tested for lupus andfibromyalgia and I was negative. So I will find out soon, but I feel I already know the answer. I mean what else could it be? My feet and my hands look like others in pictures, my trigger find that locks up is getting crooked, bunions on both feet, even under little toes. I was born with crooked 2nd toes, on my right foot my 3rd tow is going towards my 2nd toe and all my toes are going towards the shape of a Vee, left foot isn’t as bad. I still have that swollen numb right ankle. I saw a doctor the other day and he pointel out that my right leg was bigger than my left, my husband noticed it months ago and I just assumed it was swelling that day, what could be causing that? I have bought so many shoes for relief but none of them help much. Just in the last 2 weeks I have severe pain in my left heel. After 20 minutes at walmart I can’t hardly walk on my left foot and pain radiates all the way up my body and I’m sweating trying to push the buggy and get out of there. I went to the doctor and she wouldn’t give me a shot. The heel didn’t hurt when they touched it, the pain was on the back of my ankle, was this a flare up if I have it? It hurt like hell for 2 weeks and 2 days ago I woke up and it was just gone but then my rotary joints in my shoulder hurt bad and are popping, I couldn’t reach behind me to take my bra off and I have never had shoulder pain, this is new. Today my bladder has also been my pain, tomorrow could be my arms, it changes often. I use to have some good days, but that’s a thing of the past. Anyone have any good advice? Thanks everyone!