Hello all. I had neuropathy after the second Pfizer shot (damn big pharma). Orthopedic I was seeing at that time for SI joint referred me to UNC neurology. Neurology did testing and diagnosed small fiber neuropathy. The continued to see even after the CLL diagnosis. I no longer need to visit the neurologist, but can return with no referral if in within 3 years. I have also heard that massage therapy and PT can help with neuropathy. If the pain involves the lymph nodes there is a specific PT that can be done at the orthopedic. Yes, the cancer provider is a specific treatment, but the provider should and needs to be involved in your overall care. Ask for a referral to get a second opinion. If not happy, investigate changing your provider. Hope this helps.

Hi! My pain is managed by Pain Management Clinic referred by my primary care doctor. It really is great because you have specialist who primarily concerns are your pain. I pray you get the help you need!

Hi Tammy. I would definitely reach out to your primary care physician regarding your pain & depression. Oncologists, yes, primarily deal with blood cancer & other cancers. There are so many things that could be the cause of your pain & the best place to start, in my opinion is your primary doctor. He or she will begin to rule out what is causing the pain with various tests like MRI, x rays, etc. Don’t hesitate to ask questions of your primary doctor as well. I always make a list of my symptoms & questions for my primary doctor before I go to the appointment. It helps them a lot. They also will help referring you to a counselor that can help with your depression. Stay strong & reach out & get an appointment with your doctor ok. Hugs

Good afternoon Annette4. You need to see an orthopedic for the back and hip pain. When we sit for long periods of time during the day, the SI joint gets "out of joint" The orthopedic will take pictures and should refer you to physical therapy. The SI joint will cause pain down the leg and sometimes to the foot. It will also cause knee pain. Doing the exercises at home will help the recovery, but you will need to continue at home when you are discharged from PT. Ask your ENT and/or hematology to check your IgG which is immunoglobulin (antibodies). Any type of cancer treatment reduces your immune system. I kept have sinus and ear problems which contributed even more to my brain fog. My ENT has me doing 2 nasal rinses a day along with using Flonase spray. I also take generic Zrytec at night. My ENT also did allergy testing because the last one was 25-30 years ago. The allergy results did change. MY IgG was way low at 250. The base number is 650 and if below 500 infusion of antibodies is needed. I have my first infusion of antibodies yesterday and it went well. So you have 2 things you need to request ~ get to orthopedic with physical therapy and get IgG checked. Any medication the orthopedic prescribes needs to be approved by hematology. I hope this helps. Sending you hugs!

PS ~ I am fortunate that my PCP and UNC are part of MyChart. All my providers have access to my records and test results.

Everyone: Please consider consulting with a palliative care specialist affiliated either with the practice or the hospital group. They will (hopefully) work closely with your PCP, Oncologist/Heme Doctor and others. Palliative care is not just end of life care, that is hospice, rather they are positioned to provide referral services and can prescribe pain meds, referral for PT, as well as pain management specialists. I have found the Palliative care practice invaluable in making my life more comfortable (I'm pretty uncomfortable). Also..... they make sure that you HAVE your final health care wishes should/when that occasion arrises.