Chronic pain and other joint issues: Looking for answers

Hello @fletch312 and welcome to Mayo Clinic Connect. You sure have been dealing with a lot in the last 4 1/2 years and right on you for wanting to find some answers.

Have you been tested for Lyme Disease by chance? Some of your symptoms align so thought I'd ask.

- Lyme Disease: https://www.mayoclinic.org/diseases-conditions/lyme-disease/symptoms-causes/syc-20374651

What sort of tests have you had done and what has been ruled out so far?

Hi I have been tested for almost everything. They said no autoimmune markers. No arthritis no lupus. Tested for cancers. Have seen internal medicine, hematologist ,neurologist had a nerve conduction test all was fine. Blood work has been on and off with markers sometimes showing infection. Was tested for Lyme but test was inconclusive. Neurologist said did not think was Lyme. But there are not many more possibilities.

Thanks for reaching out

The Elisa was reactive for Lyme and western blot was non reactive. This was 4-5 years. Underwent antibiotics and then subsequent Elisa test was non reactive

@fletch312 Hello and welcome. I'm sorry you are experiencing such uncertainty. 4 1/2 years must be a long struggle for you by now. I understand why you're reaching out to Connect. I did the same thing a few years back searching for answers to many unexplainable symptoms.

Have you found any rhyme or reason, or triggers that exacerbate your symptoms? Any treatments that provide help? I re-read your post a few times. What immediately stood out to me was inconclusive Lyme test, negative EMG/nerve conduction, no autoimmune diseases present.

Have you heard of Central Sensitization Syndrome? CSS affects the Central Nervous System and Peripheral Input Sensory and may cause a plethora of symptoms otherwise unexplained or proven through diagnostic testing. It may be worth watching this video from Dr. Sletten of the Mayo Clinic's Pain Rehabilitation Center. He provides a thorough dive into CSS.

Your symptoms sound much like mine. I have been diagnosed with TS-HDS Neuropathy. TS-HDS Neuropathy was discovered by Dr Alan Pestronk Wash U Physician Barnes Jewish. It is diagnosed via blood test. Barnes in St Louis is the only place I know of that does this test. https://neuromuscular.wustl.edu/antibody/pnimax.html

There is a lot of controversy about how to interpret Western Blots for Lyme. The CDC goes by number of positive bands, but some docs go by whether bands are present that are specific for Lyme.

I was accused of something I didn’t do from a pain management clinic over six months ago. I’ll defend myself until the day that I die that I didn’t do what he accused, and dismissed, me about.
I now have a torn meniscus and other ligaments behind my knee. The pain is so terrible, I can hardly do anything. My knee won’t bend backwards at all. It takes me forever to get dressed or do anything that requires my knee to bend, which is just about everything.
The orthopedic doctor ordered an MRI, which showed the tears.
Whatever the past pain management doctor put in his “notes”, has put me on a “list”. There’s NO doctor, including the orthopedic doctor, my new primary doctor, the new pain management clinic I was referred to by the ortho doctor, will give me anything for this acute, debilitating pain. I don’t go into their office’s asking for anything. I tell them how much pain I have playing that stupid number 1-10 game. I have asked during my appointment for something for pain. It’s always “no”.
I have no recourse. I don’t know what to do. I sit alone every day because walking any distance is not possible. I want to be “legal”, but they’re not letting me! My depression is slipping back because of this. This, and “his” inaccurate reason for dismissal. I was in such shock when he told me he was getting rid of me. I cry constantly. Most are tears of anger, the rest are tears of pain, and the inability to live the way I used to. This “list” will follow me forever, and I’m totally worn out because it’s the only thing that I can think about. There’s no reason to call an attorney, because it wasn’t medical malpractice. But, I’ve been “labeled”, and I don’t know what for.

You are not alone in your struggle to get pain relief! I totally understand your frustration! If a doctor put something in your medical record that isn’t correct, you should do what you can to fight it! I know how overwhelming that can be when dealing with pain, stress and confusion! I have chronic pain from different sources, fibromyalgia, back problems, etc. and have been forced to find a new pain doctor after the DEA revoked my last pain doctors license to prescribe pain medication. Because of government interference in pain medication dosage prescribing, pain doctors are restricting pain medication out of fear of action by the CDC and DEA. Many pain doctors are losing their licenses and simply leaving the profession because of these issues. The doctors that remain, are either restricting dosage or not prescribing opiates. I’m caught up in that issue myself right now. Because of my on going challenges finding the dosage I was taking, I’m tapering off my pain medication now and have found a doctor who is aggressively treating my back problems. I will be starting a new med for withdrawal from opioids on Friday. They have become so hard to get, I’ve agreed to go this route as long as my pain is addressed and treated after years of neglect.
I would look into your options about filing a complaint about the doctor who put incorrect information in your records. If you do an internet search for ‘complain about doctor care’ you will see information with resources. You can talk to the department of health or the medical board. You don’t have to file a law suit. Depending on the accusation that was made, you maybe able to get advice from legal services for free on how to proceed. If your doctor has no proof of what they accused you of and it’s affecting treatment, I would start with a letter to the doctor asking them to remove the information from your medical record. Explain what your intentions are for treatment of your pain, and that his accusation is unfounded and incorrect. What proof does he have? Tell them you want your letter placed in your medical records.
I’m so sorry your going through this. As with any profession, there are bad doctors. I’ve seen a couple myself. Don’t give up looking for help! Be your own best advocate! I’ve had to convince doctors I’m not seeking medication but adequate treatment! Most doctors want to get to know you and diagnose your symptoms before prescribing these days. Unfortunately, our government has made doctors responsible for patients becoming addicts. Since they can’t get control of illegal drugs, they’ve come after pain patients!
Don’t let this doctor detour your pursuit for treatment! I would look into what my options might be about getting my records changed, especially if the information is incorrect!

I have already withdrew from all opioid meds. I have Complex Regional Pain Syndrome due to nerve damage from a severely broken and shattered ankle in 2013, I have been to 4 different pain management Dr's who either prescribed looks meds or Med. Cannabis ( none of which helped me since I was falling down and injuring other body parts.) I also had a Spinal cord stimulator implant& removal since it did not provide adequate relief from my constant pain.I also been told I have fibromyalgia and psoriatic arthritis as well.I tried acupuncture and the person treating was afraid to place any needles any where near my Rt. ankle. I don' t know where else to seek relief from my constant pain. Any thoughts would be appreciated.

@fletch312, you mentioned that you would like to seek answers at Mayo Clinic. You'll find more information about how to request an appointment here: http://mayocl.in/1mtmR63

Coming from Canada, you should use the form for International Requests https://onlineservices.mayoclinic.org/NewAppointments/?v=int