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Reactive Arthritis?
In 2011 I was diagnosed with a UTI caused by E coli. A course of ABX and I was better for about two months. Over the next six months I had all the symptoms of a UTI 3 more times, but despite labs with Culture and Sensitivity, I was found not to have a UTI. About this same time my feet, ankles and knees hurt so badly when I would first get up, it would take about 50 feet to move somewhat comfortably. I requested to go to a kidney doctor as now I was also having edema in bilateral arms, wrists and ankles. I was also starting to have low grade fevers (99.8-100.7) several times a day with fever blisters. Nephrologist ran many tests and found me to be critically low on Vit D (I trained horses in the Arizona sun 5 days a week with no sunscreen) and that also I had an estradiol level of less than 0.1. WBCs were 4200, and platelets were unable to be counted.
I began taking oral Vit D. But all of the other symptoms continually got worse. The pain in my joints worked it’s way to include my hips and lower back, wrists and hands.
I have 6-8 UTIs a year, but am always negative for any bacteria on testing. With the “UTI’s” I also started having so much joint pain throughout my body that I could only sleep 3-4 hours a night. This pain would improve within a half hour of activity but during the times when I felt like I had a UTI, if I sat for two minutes or longer, the pain would be as bad in my ankles, knees, hips, wrists and hands, as if I had just gotten up. My slight fevers 6-8 times a day became drenching sweats day and night that would come every 5-10 minutes, 24 hours a day. Ibuprofen did nothing but Tylenol helped about ten percent with the drenching sweats. Then I started getting bruises all over my body. My pressures ran 90’s over 50’s and my heartrate has increased from 60-70’s to 105-120’s. I found last year that a round of Levaquan and 40mg of prednisone daily literally changed my life. ALL of my pain went away, and the “UTI” did too. I have had five rounds of Cipro and prednisone this year. Each time I did NOT have bacteria in my urine despite having the symptoms. Each time the excruciating and debilitating pain now in my entire body, has gone away. The bruises disappeared and my heart rate drops to 80’s-90’s. My pressures go to 110-120’s over 70-80’s. My wbc’s also, for the fist time in four years, were the mid 6000’s instead of 3800-4000. My platelets actually went up to 165,000 instead of 135,000. In fact all of my neutrophils increased instead of being very depleted. And best yet, those drenching sweats day and night every 5-10 minutes, we’re gone!
But it all came back 3 weeks post last ABX dose. I have been to two Rheumatologists this fall. The first one got an MRI of my SI joints and found that there was no sacroilitis but rather severe osteoarthritis with severe degeneration in both joints. He also found I was HLA b27 positive. I am negative for the rheumatoid factor, as well as Lyme, HIV, Chlamydia, the list goes on and on. I have had CTs of my entire torso. Nothing found in KUB, heart, lungs. Both my father and my uncle had Ankylosing Spondylitis. This doc said I had neither AS or Reactive Arthritis. I went to another. Even though I told him that I have NO pain in my muscles, only my joints, and that I keep having symptoms of UTI, drenching sweats, exhaustion, and the near inability to move (my hip and knee were hurting so badly I could barely hobble at my appointment) AND that antibiotics definitely REALLY helped improve these symptoms, he told me I had Fibromyalgia. And he also thought I had an irritable bladder? On this day my wrists were swollen, but he told me I had no signs of inflammation in any of my joints.
I am 5’7” and 160 pounds. Despite this horrible pain that has now gone on for years, and the exhaustion that goes with not sleeping or being able to rest, I force myself to be active with my 13 horses and ranch. My inflammatory markers are never high, but this summer when I was covered with bruises, my drenching sweats were as bad as ever, my nails were almost peeling off, over half of my hair fell out in a month and so on, my C-Reactive Protein was 1.8.
This doctor told me that it was due to my BMI. I asked “are you saying that I am so fat, that it has elevated my inflammatory markers?” And he said “Yes”
When all was said and done, and since I wouldn’t accept the diagnosis of Fibromyalgia, as he couldn’t explain why the ABX and prednisone caused such a tremendous improvement in symptoms, (except to say he thought it was a placebo effect) he told me to go to the Mayo Clinic. He said they would be happy to take all of my money and run as many tests as they could, for anything and everything possible, but to be forewarned. To not expect the Mayo doctors to be impressed by labs that used to be 260-290 platelets and now 130-135. And also they would not care that my WBCs used to run in the 6000’s and now are around 3800 when I am sick.
So, please. Any ideas as to what is wrong with me? Whatever this is, it has already stolen a big part of my life over the last 4-5 years, as it has continued to get worse and worse.
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I believe it is something that is way overlooked in today’s medical field.
Here is some more information on it. GREAT ARTICLES!
The last one towards the bottom of the article puts the HLA B35, and chronic low Mag together.
I’m a new member and it won’t let me post links. So here are the articles. Sorry you can’t just click on them.
@zara2021 I noticed that you wished to post URLs to resources with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post are not spam. Please allow me to post them for you.
- Chronic magnesium deficiency and human disease; time for reappraisal? https://academic.oup.com/qjmed/article/111/11/759/4209351
- Magnesium Supplementation in Vitamin D Deficiency https://pubmed.ncbi.nlm.nih.gov/28471760/
- HLA and self-limiting, unclassified rheumatism. A role for HLA-B35? https://pubmed.ncbi.nlm.nih.gov/10555900/
- Study: Half of All Americans are Magnesium Deficient https://www.pharmacytimes.com/view/study-half-of-all-americans-are-magnesium-deficient
- Magnesium in the Central Nervous System https://www.ncbi.nlm.nih.gov/books/NBK507250/
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2 ReactionsI read just one of these articles about Mg and the central nervous system. It sounds like me, stress from being sick, pain from various sources.
Have been having headaches radiating from the neck. Started adding magnesium and on days I used the magnesium drink, the pain is less. How do you supplement your magnesium?
I have been using Garden of Life whole food magnesium powder you add warm water to it and drink it. It has 350 mg of Mg and some probiotic blend. I got the Raspberry Lemon flavor.
Got it from my daughter who didn’t need it anymore. I had only been using it when I was visiting in Michigan but just ordered some to be delivered to my primary address.
Hope this helps! Looks promising for my symptoms.
I have the same nail ridges and was started on thyroid replacement 5 years ago. Ridges still there.
Hi Zara--I don't have any real insights into what's causing your problems, but I do understand and sympathize. I too have been told (1) I have rheumatoid arthritis; (2) I definitely don't have RA "just' OA (the rheumatologist reversed himself); (3) I need an eye exam once a year because I am taking hydroxychloroquine--it may affect eyes but only after a long time; (4) After a month on hydroxychloroquine I have had major eye-prescription changes in just a matter of weeks. I believe MDs do not take the time to fully understand/read up on the effects of the drugs they prescribe, much less the interactions, and right now medical diagnosis seems very uncertain--although some of the MDs I have used seem to feel they are absolutely correct in their assessments. It's a distressing picture right now, and if someone has symptoms outside the commonly accepted parameters, the MDs I have used often get annoyed or even angry when you question them further. I do hope you get to Mayo Clinic.
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1 Reaction@jilliemo12345 mine too. But I’ve read articles that state ridged nails are a sign of hypothyroidism. I don’t know … perhaps the ridges become permanent? Medication doesn’t really cure the condition - just keeps it in control. 🤷🏼♀️
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If I have an internist who will not send me to an rheumatologist or an endriconlogist for my hashimotos.. WHAT CAN I DO TO GET MORE INFO ON MY JOINTS AND PMR
Welcome @barbn1234, If it were me and I had a doctor or internist who was not willing to work with me I would be trying to seek help or a second opinion with another health facility. Something else that you can do is learn as much as you can about your condition by reading information from reliable health sources. Here's a discussion that you may find helpful when searching for trustworthy information.
-- How do you identify trustworthy health information?: https://connect.mayoclinic.org/discussion/how-do-you-identify-trustworthy-health-information/
Are you able to seek help at a major teaching hospital or health facility like Mayo Clinic?
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4 Reactions@zara2021 I hope you are doing well. I was diagnosed with reactive arthritis back in 2006. It all started with a salmonella infection I had after eating chicken meat that is not well cooked. It took me two weeks to recover from salmonella and about three weeks after that the RA symptoms began: pain and stiffness in my knees, ankles, feet, and eventually my lower back. Eye inflammation (conjunctivitis). Eventually, my ankles, knees, and right foot got very inflamed. I was studying in Italy when this happened. I know the pain and frustration you are going through. It took me two years to be diagnosed correctly. Endless tests, specialist visits, and pain medication to little to no effect. The Italian doctors did not have a clue what was wrong with me. I had no history of arthritis in my family so the doctors discarded the possibility. Long story short, I came to the US two years later, and thank God I was lucky enough to find a great rheumatologist in Connecticut who knew exactly what my problem was. He ran all tests again. I was HLA b27 positive, I had an intestinal infection (salmonella) that triggered the RA. My eyes were burning like crazy and I developed eczema. At this point, I was not able to walk anymore. Every single joint from my low back to the toes was in pain and swollen. I started a treatment based on prednisone, sulfasalazine, and methotrexate. The doctor promised me that in three months I was going to walk again and he was right. Three months later I walked again after being confined to a bed for six months. I continued the same treatment for ten years until it was no longer working for me. We switched to biological treatment and it has been good. My doctor, God bless him, retired six years ago. The one I have now continued my treatment and so far she is been great. I still struggle with inflammation, pain, and joint stiffness. I have had three bad episodes of uveitis (a form of eye inflammation). My right hip is in bad shape and I may need a hip replacement soon. Some days are good others bad. I pray that you will find the right doctor who will help you to get better soon. Hopefully, my story provides some guidance for you to find hope and direction to resolve your situation. By the way, I have the same ridging fingernails as yours.
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1 ReactionI had all the symptoms of pain in joints, tiredness, bladder symptoms and nail ridges, brittle nails and thinning hair.
A cough and chilling off and on.
before I was discovered to have low thyroid and before my blood worked showed reactive markers. I developed ISLD and AFIB. I have Rheumatoid Arthritis.
I should have pushed my doctor to send me to a specialist.