I am now starting Cymbalta and it seems to be helping. It was prescribed for me by a pain specialist on staff. But I just sent a note to him since he started me on a low dosage, that I probably need to have the dosage raised since I’m getting the pain when I go up stairs or longer walks.

Truthfully, I am frustrated. I cried all day the other day.
When I was a child I took IVIG therapy until age 18. My neurologist passed away Sept 2022 and almost had IVIg therapy approved. Then the doctors in the practice said sorry you do not qualify. A doctor I trusted that I had seen since 2002-2022 to a new doctor. We believe it’s autoimmune but I haven’t tested positive for anything. Elevated CRP and sed rate sometimes elevated Ana but not all three together. My grandmother, mother and my cousin was born with juvenile rheumatoid arthritis. Been trying to get a referral done to University of Boston. Dr Anna Oaklander a research neurologist that’s hard to see. My neurologist would not fax clinical notes. I went and picked them up and faxed them myself. They have put a bunch of incorrect information into my medical records and they refuse to remove it. The brain mri shows I have never had a stroke but I get severe migraines that slurs my speech and the mri shows the migraines affecting my speach. Happened to get a migraine during the mri. I had bacterial spinal meningitis in 2002 that’s when I started having severe migraines. I also believe that’s when the neuropathy truly started. I had IV antibiotics and Picc line (line put in upper arm to administer IV drugs) for four months ( had to go in 24/7 if they did them three times a day I constantly threw up) then oral antibiotics for another two months. We do not know what has caused my neuropathy everyone has a cause. I am going to her for genetic testing and since it’s a research facility my adult kids 38/28 will be tested genetically to see if they have it. Currently after watching me struggle they do not want kids.
This has affected my family in so many ways. I always wanted grandkids but at the same time I can understand how they feel. They do not want to hand it down genetically. I am not diabetic and my hypothyroidism was diagnosed three years after the neuropathy. For pain the only thing I am not allergic to is OxyContin 20 mgs TID (three x a day) Oxycodone 15 mgs up to six a day. I have a rare sulfa, sulfite and sulfonamide drug allergy. My aunt has the same allergy. There’s only two antibiotics I can take. This is getting where it no longer works my medication been on the same dose over 10 years. Four left hip replacements and a actebulum fracture takes its toll. Then a right hip replacement. There is only one type oxycodone I can take kvk-tech and that I am not allergic to. My insurance will not cover it because the pharmacy is out of network that carries it. I have over 50 different drug allergies. I hallucinate on hydrocodone , morphine sulfate quit breathing turned purple and I can’t take fentanyl. The others gabapentin has a sulfa component and so does Lyrica. Currently, I have been diagnosed with foot atrophy ( loss of muscle) feels like I am walking on rocks. It makes walking hard. I have a friend that has neuropathy and when her feet started to atrophy the bones fell out of her feet no muscle to hold them in place. Then she ended up with an infection and had to have both feet amputated. It scares me watching her. It’s very painful. Texas is a non medical marijuana state. When we come back from Germany we are hoping to be in Colorado. I think I would like to get off the pain meds and go to medical marijuana since I am asthmatic it would have to be homemade edibles most people do not realize that some edibles have butane in them. Alcohol has sulfates in it so I can’t drink otherwise it triggers my asthma. When my pain gets bad enough and lack of sleep I start having seizures. When it gets to that point I have to take a lyrica (change the capsule to vegan and put it in a different capsule with two Benadryl take more than once my mouth blisters up and my face swells). I don’t have spinal stenosis but I do have lower back spinal bifida and ehlners danlos double jointed problems in my back.
They did the EMG/nerve conduction on my arms they say I don’t have neuropathy there but when cooking I can cut either hand and not feel it and look down and them to be bleeding. Plus I get severe nerve pain up and down my arm. My fingers get locked up and disfigured. The pain starts in my forearm. Not in the wrist. I ended up with stitches three times in one month. The doctor tried to accuse me of being suicidal until he sewed me up with no lidocaine. Did not feel it. I told him why numb something I can’t feel?They have done an mri on my neck no pinched or compressed nerves. My C6-7 fusion was caused my a seizure and injuring myself when I feel in the elevator also had to have a biceps tendon reattachment. The seizure was due to stress and lack of sleep along with the pain in my feet. This really takes a toll on a person. It affects you mentally and physically. I love to cook but now can’t stand up long enough. I loved canning fresh vegetables along with making homemade jellies and can’t do those things. I have learned to pace myself. For example I start Thanksgiving several days early and just heat up the day of. I leave my pies to the night before but dressing and turkey is already done. I have to cook cornbread and biscuits a couple days a head of time now. Do my grocery shopping two weeks early. That way I have time to rest in between. I use a scooter in malls and grocery stores. Airports I use the wheelchairs in the airport. I have had to learn to give in that I can no longer do it myself. My husband helps getting me undressed with pants and TED hose (compression hose) my legs turn purple and swell. The really bad thing spent over 5,000 dollars redoing my wardrobe and no one explained about swelling and neuropathy so none of the clothes fit. I went in two days from 160 size 12 to weighing 210.
So needless to say that was very frustrating to go from a size 1.5 to a size 3. I am holding on to them hopefully some point maybe the swelling will not be so bad. Already on diuretics because of the medications to stop the bradycardia and tachycardia of the cardiac autonomic neuropathy, gastroparesis ( can go days without eating because your not hungry), bladder problems. Just an fyi when it gets to that point go to the restroom every hour whether you have to or not. It keeps you from having accidents in public. Things I have had to learn on my own. I have learned to start carrying snacks where glucose does not drop too low. I normally carry granola and things in my purse. When I travel back and forth to Germany I carry no salted nuts and apples with me where I have something to snack on. I carry my own herbal tea and a Starbucks mug for hot water.