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I’ve had bloodwork show something is up. This has been for the last few years. Unfortunately, my doctor said until I was more symptomatic, it was hard to nail it down. I’ve been really thinking Rheumatoid arthritis but I am all over the place. Every joint my body aches at different times. The last few days, all of my joints hurt but I am also muscle achy and tingly in my arms and legs. I’ve had Chiro a long time, massage twice a mouth, laser therapy on my hip recently and eat clean. My doctor sent me to the rheumatologist and the rheumatologist seems to brush me off as we’ll know more when we know more. I’m sad, done, and just need advice. Has anyone got any clue what all of this means (why my symptoms are what they are) and how to get the medical peeps to listen or look into it more? Frankly, I’m pissed.

Have they done a Lime disease titer?

No, I had not thought of that. I do live surrounded by woods and ticks.

Oh Deena, please ask a doctor to do one for you. I keep reading that Lyme disease can "hide" or mimic other conditions, and many doctors - for whatever reason - don't think to check this out! It is treatable with antibiotics. We have known folks who were suffering random moving aches and pains before some doctor decided to test for Lyme and they came back positive. (I think it's a spectrum type analysis. My dog had it when we adopted him and years later, after treatment with Doxycycline, he can still test "weak positive." So that's all I know about the test.)

Ask for Lyme, Ask for a Vectra blood test, I am seronegative meaning the normal labs don't show anything positive. But have active disease.
My imaging, and Vectra both show positive disease activity.

I would encourage to cut out gluten, all sugar, and nightshades, if you have done that then, try eliminating legumes (this includes coffee). Sometimes dietary changes can help decrease inflammation. I would also ask for a referral to another rheum. Some just don't care, others don't trust seronegative disease is a real thing. A quality rheum that does listen and do the additional testing will help you get this under control.

Thank you. Is it normal to have pins and needles and I would say approximately 25% numbness in parts of the legs and arms? I mean normalizing related to Lyme or something along that line.

I'm so sorry Deena! It is so frustrating to know there is a problem but no clear diagnosis or answers. Sometimes I think it's pure luck to find the right doctor with the right experience and knowledge to run the right tests.

I don't know much about auto immune diseases and their symptoms (all I know is that the symptoms are all over the place!) but definitely don't give up searching if you know there is something wrong. A friend who just had some vision issues/headaches and numbness on one side of her body was finally just diagnosed with MS after pushing for a second opinion. (First doctor told her the double vision/tingling was probably stress and to not worry about it.)

I hope you find some answers soon - and Tush's advice about the diet is one that so many primary doctors often overlook as a place to start!

A good friend suffered for 10 years with same symptoms. Yet nothing showed up on blood tests. Just got diagnosed with Rheumatoid Arthritis last week.

Finally went to a new doctor who used a different diagnosis other than bloodwork. My friend’s blood work showed nothing.

I hope this helps you.

I just remembered that Magnesium intake is important in preventing muscle pain issues, as are a lot of mineral electrolytes.

In 2020 I was hospitalized for IV-administered saline and potassium as my ER blood draw revealed I was critically low in both those electrolytes. (rapid heart rate, shallow breathing with difficulty, felt light-headed, involuntary muscle contractions, etc.) The doctors had no idea what caused the emergency. Two years before, I'd been put on a diuretic for added BP control with no noticeable problems. They nevertheless claimed my crisis had to have been caused by the prescription diuretic, but I will never be sure. I put it down to a weird drug interaction with a common cough suppressant I tried taking the night my symptoms developed. I also had tingling in my feet which came on all at once after being in the hospital bed for 3 days. Nobody could explain that, either. I recall walking on "pins and needles" for about 4 days after I was discharged!

So just a suggestion: review your vitamin intake. All-in-one kind of vitamins give only a small amount of the body's RDA of magnesium, for example. And some can be toxic if we take too much.

Yet something else to look into, while you pursue this mysterious set of symptoms...keep us posted.

[This message edited by Superesse at 7:23 PM, Monday, October 31st]

That sounds like nerve pain, do you have any spine issues in your upper back/neck?
You may need to see a ortho that will order an EMG.
In the meantime I second the Magnesium but you have to get Oxide, not citrate (citrate supplements will make you shit yourself).
Along w/ nerve pain relief you can try plain old alph lipoic acid, or one of the OTC meds advertised for nerve pain/restless leg stuff. It usually is a combo of the above w/ some other supplements.

Personally I am extremely prone to charleyhorses, like wake you from dead sleep unable to stand cramping, and I have increased my magnesium intake double the recommended and no more muscle cramps unless I overuse a particular muscle group one day.

Since Rheum didn't give you any answers and it does sound like nerve pain stuff I would ask for a referral to someone that does CTR surgery the first thing they do is order what's called an EMG and it's nerve conduction study, if there's an issue it should pick it up.

I have an awful back. I was diagnosed with degenerative disc and degenerative joint disease at like 42. I’m 46 now. My doctor made several comments and said it never hits anyone that badly that young. He was floored. I am active and in decent shape and wondered how much it had to do with being a gymnast when I was younger and a runner throughout my whole life or who knows. I just don’t get it. Back and neck pain are constant for me. I will ask for that test.

[This message edited by deena04 at 11:21 PM, Monday, October 31st]

So sorry you are suffering and unable to pin down a diagnosis. I don’t have answers, just a bunch of me too’s. It feels stupid to even type out a summary of the crap I deal with inside this body. I could write a book and keeping a medical journal has helped me keep all the symptoms and issues straight. I have been diagnosed with fibromyalgia, migratory poly arthritis, mild scoliosis and have multiple herniations in my c-spine, with bone spurs that aggravate nerve bundles that cause numbness and tingling in my arms. I have bone spurs in most of my joints, and the arthritis is a family curse. My joint pains roam around and thank goodness they take turns or I would lose my mind. My neck, low back, shoulders, hips, knees, fingers and feet take turns aching and burning and tingling and it has become background static in my life for many years now. It seems like I have flare ups, but can’t pin down if it is stress or diet or autoimmune related. I have done the FODMAP diet for my IBS and saw no change in any of my symptoms with changes in diet.

I’ve had periodic blood work results that suggest something is off, but nothing definitive. I also saw a rheumatologist in the early years and my bloodwork was normal. I had peri and full menopause during those years to add to my confusion and stress. I really feel your pain and frustration and sympathize. There’s only so much defending yourself when you’re being told there’s nothing wrong with you that a person can take.

I have not been tested for Lyme, although one specialist suggested it but my primary did not think that was the issue and focused on the arthritis instead. I have learned to live like this and do what I can when I can and try to live as healthy as I can. I feel your frustration with the Dr.’s being dismissive. Before I got the right tests and a good neurosurgeon, my c-spine herniations were being treated with SSRI’s and Xanax as stress related. By the way, with my neck problems my neuro told me to NOT go to a chiro, because the risk of further damage was too great. The IR and stim were useful therapies but he insisted that I never let anyone crack my neck or back, but I had already given up on chiro as not helpful. Physical therapy specializing in c-spine issues helped me a great deal, and taught me a lot about my body and how to mitigate the effects of the arthritis with exercise and good posture. A good physical therapist is priceless.

I am no stranger to advocating for myself, as my Gyno insisted my perimenopause symptoms at 43 were stress related, and she argued that I was too young for that, when in fact I went through full menopause at 46. I have a hard time trusting doctors now and thank my lucky stars that my health problems are only mildly debilitating and chronic and not acute or life threatening. It’s a chore advocating for yourself, especially when they decide you are a whiner or a problem child. I got so tired of explaining that my symptoms were not due to stress, but were the cause of my stress. When my neuro looked at my films and explained what was wrong with my c spine and causing the cascade of symptoms I cried happy tears to know I was not crazy. I still think there is more going on than we understand, and wonder if downstream I might test positive for rheumatoid arthritis as well. For now I just celebrate the days where most of my joints work. I have gotten by with lots of physical therapy, steroid injections, acupuncture, yoga, massage, muscle relaxers and the occasional Klonapin. Getting prescribed SSRI’s did nothing to help my symptoms and Ativan and Xanax were helpful in the short term with pain relief and sleep, but not the long term and coming off them was a scary experience I would not recommend.

Good luck finding some solutions and advocating for yourself as you seek some relief. Finding a good doctor, or any doctor these days is becoming harder and harder. When we moved it took me months to find a physician and dentist who would even take new patients. My young neurosurgeon retired due to burnout, my GP retired due to health issues, my rheumatologist moved away and I never went back to that bitchy Gyno, and then I moved to a rural area with fewer doctors, so the struggle is real. I hope you have a good qualified team in your corner. Keep advocating for yourself, keep good records of your issues and take care.

Ask your rheumatologist to check for PMR (poly myalgia rhuematica). Every joint in my body hurt to the point where I could barely move. PMR is an autoimmune disease that affects the connective tissues. I take prednisone now and it’s a miracle.

My initial blood work showed only slightly elevated inflammation but the doctor could tell by the way I was moving (or not moving, more precisely) that I had PMR. And although my blood didn’t reflect the levels of inflammation people normally have with this diagnosis, he was certain that within 24 hours my symptoms would disappear after taking the steroids. He was right. Please ask your doc about PMR if you haven’t already. Best of luck.

I want to encourage anyone here that has a bad experience w/ a provider to get a different one.
NEVER EVER stay w/ a Dr that you feel does not listen to you.
Especially when it comes to treatment of chronic conditions like Rheumatology, Gastroenterology, etc.

You have to have a Dr that listens, respects, and willing to treat you.

Deena04 - I would encourage you to find another Rheum, which is frustrating because the wait to be seen is 6 months in many areas. But regardless of the condition most rheumatologic issues are treated with the same meds. I would inquire that if the Rheum you saw is willing to do a steroid trial to see if symptoms improve. It is common practice w/ seronegative disease (meaning bloodwork doesn't give a specific positive diagnosis) to do a long trial of steroids to see if you get better, if you do then you move on to first level drugs called DMARD's, things like hydroxychloroquine, methotrexate, imuran etc. These drugs work to calm down the overactive immune system that causes the joint pain/destruction. If that doesn't work then you move onto biologic/Jak inhibitors.

Thank you. I agree, move away from a bad doc. I am looking for a new rheum. I was put on prednisone a couple years ago when I could not kick pneumonia but it gave me a heart palpitations so that one is a no-no for me now. I hope something else works. I saw at least a couple of you mentioned steroids to start with anyhow. Since I react to prednisone, I’m guessing I should just stay clean away from all steroids… Maybe?

You may be sensitive to steroids, but I wouldn't rule it out totally. You were sick, and it was with something respiratory. Which makes it more likely to cause palpitations.

I too have had palpitations when taking steroids, but even a low dose of 10mg or 5 mg for a couple weeks to see if things improve.
Long term use of steroids is NEVER good there are all kinds of things that it does to your body, that cause bad problems.

Maybe see a pain management physician and get some steroid shots in your back to quiet things down, and help w/ the pain. When you get the injections the side effects is much less.

I’ll ask about injections. Thank you so much for all of the recommendations. I just get so frustrated when I get looked at like it’s no big deal. I generally have to lay in bed every morning and do ankle rolls for 5 to 10 minutes to make sure I can actually stand on my feet when I hit the ground. Everything so numb and off right now. My whole body hurts. I’m not in bad shape. I exercise. I honestly feel like that is what is keeping me going and keeping my body running right now.