Undiagnosed Autoimmune with back pain, spasms, and stiffness
Hi, I’m hoping that by posting my situation I can connect with people who have similar symptoms and possibly get me closer to an answer regarding what is going on with me.
My symptoms have gradually worsened in a 2 year time frame and got drastically worse last December. Things have gotten better since December but I seem to be having new issues since then. I have had issues with my back for approximately 10 years on and off mainly tightness of muscles in my back always in the right scapular area. I have always seen a chiropractor for this it gets better after but soon comes back. 2 yrs ago I stayed having pain in my right wrist and my knees were bothering me. I did not seek medical attention for this as the symptoms would come and go and I could go months in between of having nothing until it acted up again. I summed it up as I was working out to much, I was doing CrossFit type classes and running quite a bit.
Last fall things really changed however, I started having these terrible back spasms? It felt like a bolt of electricity down my spine and the pain would radiate out. It hurt to move or breath. The pain would eventually ease up but that would take almost all day for any relief. I had 3 of these episodes of which I seen my chiropractor for and he said he couldn’t make much since of it. Then I started having electric like shocks in the left side of my face this lasted for about 2 mos. During this time the muscles in my back grew drastically stiffer. The stiffness involved my whole back and neck. I finally went to my Dr. who sent me to Physcial Therapy. I went to 2 sessions and quit because they told me they were not for sure what the issue was and things were getting worse. I ended up back at my primary cares office due to worsening of symptoms. I started having low grade fevers every evening along with chills. I had no appetite (I ended up losing 10lbs in about 3 wks time). I have muscle twitches throughout my body, this has been constant since it started in early December. I have them every day regardless of how I’m feeling they seem worse when I feeling bad though. I had tensions headaches that were horrible no over the counter pain medicine would help. I also had an extremely sore throat and at times it felt like something was stuck in my throat this also caused trouble swallowing. I also had joint pain and muscle aches all over my body. I also suffer extreme fatigue. Heart palpitations, I had every test ran on my heart and they couldn’t find anything wrong. During this time I had tons of lab tests run and they found I had a positive ANA- 1:320, low positive Rheumatoid Factor- 37. I was sent to a Rheumatologist. Since this time I have seen 2 different rheumatologist the second I am still seeing today between the 2 I think they have ran every lab they could run and have only found a positive anti-RO SSA- >8.0. I had a salivary gland ultrasound that came back normal and a Schirmer test which was also normal- 18-20mm in both eyes for 5 mins. I had an MRI without contrast of my brain and cervical spine which came back normal. Lyme disease test which came back negative but I have had several drs tell me that that test is worthless. Which makes me second guess it’s findings. I also had an EMG done on arms and hands only which only found I had mild carpal tunnel. Dispite all the tests I have had done my rheumatologist has not been able to make a diagnosis. Y
While things have gotten a bit better since December I still have “flare ups”. I’ll have days and weeks I almost feel like my old self then all of a sudden I have several days in a row or weeks in a row where all my symptoms come back.
My rheumatologist has sent me back to the neurologist and I’m currently waiting for my appt. She says I need re-evaluated by him due to some new neurological symptoms I’m experiencing. Those include pins and needles feeling in my hands at night, a vibrating sensation in my left thigh and also my feet. The left side of my tongue and lips feel numb/tingling. And the persistent muscle twitching which has not resolved in its own. I also have trouble thinking at times (brain fog).
I’m sorry for the long post but I wanted to put it all out there to see if someone else has had anything similar. To add I’m a 33 yr old female and have been a type 1 diabetic for 32 yrs. my diabetes is very well controlled. My endocrinologist has ordered every lab she can to rule out anything on her side which included a celiac panel, adrenal panel, B-12, and there was one other but all of those tests came back normal. My ferritin level is low this was found about two years ago and they were never able to figure out why. When this flared up in December my primary checked my iron and the ferritin level was 19, borderline low which is what it always has been. She rechecked 4mos later and it had dropped to 6. I am back on my iron supplements currently.
Thanks in advance to anyone that can add any info that would be helpful to me figuring this out!
Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.
@rachelp @amberlynne5 @jgerstley1 It sounds like you are all doing a great job of advocating for yourself! It is so important. Also keep a good notebook of who you see, what they say, what tests were done, etc. Encourage the doctors to ‘think outside the box’. Many of them never learned much about autoimmune diseases because there weren’t many until recently. An author wrote about “the autoimmune epidemic” and now those diseases are more studied in Med school. I finally went to a university hospital and a neurologist had heard of my disease! But, she was young and still doing a fellowship. ( my flight was just called so I’ll finish later!)
@jgerstley1 Good morning. Your wife has had a really rough time—it must be so difficult for both of you. Have you been been back in touch with Mayo or NIH to let the doctors know of the changes? Maybe they could work with your local doctors. Is it possible to get in touch with them?
So sorry for your painful difficulties..I would really try and find a Dr that specializes in Lyme and have further testing . Symptoms sound quite familiar to a friend of mine as so many of yours appear neurological and Lyme does that it is such a new phenomenon by hat getting a real accurate result is very challenging
Hi Amber, I'm sorry that this is a late response to your original post. I have hashimoto's thyroiditis it's an autoimmune disease. I want to encourage you to see your regular doctors along with a natural path or integrated medicine doctor. Integrated medicine doctors test your vitamins and minerals things normal doctors don't. Tingling sensations can often be low b vitamins. I have a lot of joint pain and do not have arthritis. Fish oil, hyaluronic acid, supplements helped tremendously. I take a multitude of supplements. Magnesium helps with pain. I also do vitamin IVs and that helps tremendously. Do research on your vitamins and minerals include that in your care. It's a journey and they all work together I also see a chiropractor monthly and that helps as well.
I’m sorry that your going through so much. I can feel for you because it took awhile for them to diagnose what I had. Some of the symptoms you have I had. Finally I found a doctor that was able to diagnose the issue. I have an autoimmune disorder call stiff person syndrome. Tell your neurologist to check your ANTI GAD-65. I hope I was a help.
Thank you for the suggestion, I will check into that.
@kjo1 May I ask how they determined your thyroiditis? It looks like I'm dealing with Lyme bands (but not cdc positive due to being short for the IgG band but have more than enough IgM (recent/current exposure). I have many symptoms (muscle/joint pain, hair loss, weight loss, thyroid nodules, occasional tingling near fingernail/tip, pulsation like twitches random areas of the body, poor sleep…the list is long) that can be listed under both Lyme/co-infections but still question my thyroid as Lyme and thyroid problems seem to overlap or be common. But – since my TSH was in normal range they dismiss any further testing like T3 & T4 so I was curious how you were diagnosed.
@julz I wonder how this Canadian MD treated her? I heard it goes undiagnosed and gets ignored as often in Canada as the US.
@jgerstley1 Hello from Connect. I wonder if you’ve found any answers for the problems you wife had. It all sounds so difficult for her. I hope you’ve found out what going on. If it’s OK with you, will you tell us if there’s any positive news? Becky
Has Mayo assessed you for Chronic Pain Syndrome or Central Sensitization Syndrome?