I Just Want a Diagnosis! (Update: it's "soft tissue rheumatism")

[yourcolorfuladdictio]

I’m at my whits end. I’ve gone from happily working 50+ hours a week (20h feed/water/hay at a barn & 30h at a tack shop), doing stalls 2 days a week to help with board, and working my horse 6 days a week; to struggling through 5 days a week at the tack shop and dragging myself to the barn to pet my horse and occasionally lunge her. My joints ache, my muscle ache and twitch, I’ve got a mild tremor, there’s this pressure behind my eyes that occasionally gets so bad it gives me double vision, I’ve had a throbbing headache for weeks, my chest is tight and sore, I have sound/light/smell sensitivity, I’m dizzy, I have word-finding difficulty, tingling/numbness in my legs, and I’m stuck in this impenetrable brain fog that is getting increasingly thick.

Being extremely intelligent and stuck inside my own head is getting frustrating and exhausting. I can’t communicate effectively on a daily basis, so I’ve taken to saying less and less to the point where I might be becoming curt despite not intending to be. I am much more sensitive than I used to be and I don’t like it. I lost 15lbs in two weeks but because I was “over weight” it wasn’t seen as a “problem”.

I hate telling others how to do their job, because I dislike it when it happens to me but I feel like I’m having to fight for a diagnosis. I feel like I’m being taken as someone with some mild aches and pains, but these are seriously debilitating. The first person to look at me like “oh my God, this is serious” was my neurologist’s PA but she didn’t want to step on the Rheumatologist’s toes (if I ever hear from him/her).

I NEED to be tested for Lyme. My PC dismissed Lyme because I don’t have a rash or a fever, stupid. The neurologist’s PA thinks Lyme is a prime candidate. Since my labs from Monday came back negative for rheumatoid arthritis and thyroid disease I’m at the bottom of the list to see a Rheumatologist; they haven’t even called to schedule an appointment yet. I broke down and called the neurologist again today and had my labs transferred (because my labs weren’t already made available to the neurologist) and will be getting tested for Lyme in the morning (no idea what test).

I’m broken; 26 and useless and it’s agonizing. I just need someone to say they understand and they are going to fix it, or at least name the monster taking my youth and sanity so I have something to fight. I feel like I’m swinging in the dark and I’m out of energy.

Someone talk me off the ledge!!!

[skydy]

Yell loudly and intelligently, but politely, until someone listens. Don’t give up. Write it down before you see the doc so you will remember to tell them your reasoning and concerns and, so if they do piss you off, you won’t clam up. Sometimes lady doctors listen more carefully to women with weird symptoms. Do you have any doctor that knows you well, (or that knows someone that you know well) ? who won’t write you off as a nut?
I suppose that many docs are restricted test-wise by insurance costs, however, there is no excuse for what is happening to you. Keep talking to neuro and don’t depend on PC to go between (since PC isn’t listening) Those are rather serious symptoms.
Keep calling. The squeaky wheel…

[suz]

I’ve been through something similar over the past two years and what do ya know–chronic lyme for me too.
Hope you get some relief soon.

[charismaryllis]

MRI!
CT!

feel better.

[Diamontaire]

You just described me on a daily basis to a T. I didn’t have a rash either, so Lyme was dismissed. The fact that I’m a trimmer and have pulled off a million ticks was blown off, because of no rash. Misdiagnosed for FIVE years, now my Lyme is chronic. 60-70% of women (assuming you’re female?) do NOT get a rash.

My gut says Lyme is your problem; scream at them until you find your answer.

[beowulf]

what is the possibility you are simply burnt out? 50 hrs + a week physical labor, + riding, + winter, + barn responsibilities for board… do this ad nauseum and people burn out quickly.

much of what you are describing happened to me last year, when i was working 50-70hrs a week as a barn manager… and then had to scrape time together just to ride. not worth it. pay/boss was awesome but i found an office job and even after plugging in overtime i don’t feel as exhausted anymore.

[alter-real]

I’m so sorry you’re dealing with this. I understand it completely and wouldn’t wish it on anyone - I’ve gone through the same thing for 5 years and am not yet 30 years old. My world has definitely gotten smaller than it was before I got sick, but it’s much broader than 2 years ago so there is hope. Please feel welcome to PM me if you would like. There are a plethora of “invisible” illnesses that often go unrecognized but this does sound like Lyme. You need to find a doctor who will run the proper tests - that is, both the standard western blot and the ELISA test. I’d recommend using the lab Igenex (not sure of the spelling). What you should look for is an “LLMD” or “Lyme literate doctor”. You can start with trying this: http://ilads.org/ilads_media/physician-referral/
If you do get a diagnosis of late-stage Lyme I would be more than happy to share my experience with finding adequate treatment. I don’t necessarily recommend continuing with an LLMD for treatment, but it will help with initial diagnosis.

[mswillie]

I just don’t understand the reluctance of some physicians to run a Lyme test. It’s not expensive relative to all the other tests they want to run and although it isn’t 100% accurate it’s certainly very useful.

My SO went to a doctor for symptoms consistent with Lyme disease and that doctor sent him for an HIV test instead. Long story short he got the Lyme test and lit up every single marker for the disease. He has chronic Lyme. I can’t blame that on the doctor because the time elapsed between the HIV test and the Lyme test was only a couple of weeks but it’s inconceivable to me that he had to fight and pull strings to get the Lyme test done.

My sister is a physician in Fairhill. It’s endemic in that area to the point where if a patient comes in with the classic symptoms she’ll have the person get a Lyme test pulled right away. She’s seen way too many symptomatic people who subsequently test positive to fool around with a bunch of other testing before she looks for Lyme.

It saddens me to see that so many people have doctors who dismiss their concerns because they didn’t get (or didn’t see) a rash. All the literature says that the rash is seen only in about 50% of cases. It’s not rocket science.

[cayuse]

Even though your labs came back negative for arthritis you still may have it. I was one of those people. It took a LONG time before I was able to get a diagnosis and it had progressed by then so if it is not Lyme, you might want to revisit the RA again. Just in case.
And about being curt and not intending to be? I can relate to that.

I hope you get an answer soon and if you don’t, persevere until you.
Oh, and do you have anyone that can go with you to your appointments as “reinforcement”? Someone who can advocate for you and push for answers? Sometimes that helps to get their attention.

[stargzng386]

I have very similar symptoms and it turned out it was a food allergy. I had some gut symptoms too but most of mine are exhaustion, trouble speaking and brain fog. Keep pushing for a diagnosis but keep an open mind that it might be something else as well. Maybe keep a diary of how you feel, what hurts, what activities you missed to get the doctor to take you seriously.

[2miniB]

I’m so sorry you’re going through this. I’ve been through something similar myself, and it was terrifying and infuriating. I swear not knowing what’s wrong and feeling like everything is falling apart is the worst. I’ve had pretty much all the symptoms you mention, and I was diagnosed w/ chronic Lyme, babesia and bartonella. I’ve been in treatment for almost 2 years now, and I’ve gotten a lot better. Within 6 months, I went from graduating college with a 3.98GPA and a biology degree to barely able to think, write and speak. That got better, but its been rough. If you have a family member or friend you can trust to be an advocate for you, that can be really helpful.

I see you say you’re in MA and NC. Would you be able to travel to NH? I know of a LLND in NH. My LLND recommended him as a backup if I ever needed someone. I haven’t needed to make the trip to see him, but I have heard good things about him. I’m not sure if I’m allowed to link to another forum, but the Healing Well site has a very supportive, informative Lyme group. Someone there might be able to help you find a LLMD or LLND to work with.

I so wish I could help more, but I’m having a bit of a rough time myself now between babesia treatment and Lyme related wrist issues. Not sure how you feel about herbs, but Stephen Buhner has written some excellent books on Lyme and coinfections. The new edition of his Lyme book will be out in about a month. If nothing else, they give a really good picture of how these bacteria work and why they can be so difficult to diagnose. Most of the people I know have had to use either antibiotics and herbs or herbs alone to heal.

[tbchick84]

While you’re waiting/looking for a doctor to help you, try systematically eliminating food groups. With the symptoms you describe, I would start with dairy. At 26, you might just be finally getting to a point in your life where your body is no longer able to tolerate foods it used to be able to process. I had what I’ll call a bad tummy for years. After many tests, visits to specialists and being pat on the head each time saying it’s stress, I eliminated dairy. I haven’t had a bad tummy day since.

With your job, Lyme is a very good bet, but please investigate more simple causes as well.

[Madaket]

I would highly recommend having an MRI of your brain done as well. Your symptoms strongly resemble those of Multiple Sclerosis which also shares a lot of the same symptoms as Lyme Disease.

I was diagnosed with MS last year and I pretty much have all of your symptoms plus some extra ones.

I wish you luck on your journey and diagnosis.

[Nike13]

Push for an MRI. I went through 5 years of misery and 7 doctors before getting diagnosed with a pituitary tumor that is entirely treatable with medication. Five years of near constant periods, cramps, muscle and joint pain, brain fog, depression, and severe GI issues that no one could figure out. Multiple ER visits that were never truly diagnosed. I finally found 2 doctors who listened and didn’t give up, and had no problem referring me to other specialists when they ran out of ideas. My GYN eventually sent me to a reproductive endocrinologist because I was “the weirdest case she’d ever seen”. Nothing BC related we tried worked, and many of them made me feel worse. At this point I was dealing with daily headaches that I attributed to the stress of it all, but the new doctor zeroed in on them and scheduled me for an MRI. Sure enough, there was a tiny pituitary tumor that had been suppressing estrogen production all this time. Within a month of being on the new med I was headache free, had an appetite, and so far I’ve gained weight and gone off all BC related meds and am feeling like my old self again. Don’t be afraid to kick and scream and be your own advocate. I ditched 2 doctors who told me to “just deal with it” and left me in tears after every appointment. I refused a drug change that I knew would make my depression and pain worse, and was told “if you won’t do take this, then I can’t help you”. The 3rd one listened and started the chain of events that finally led to a diagnosis this summer. I just wish I had been more assertive from the start and maybe it wouldn’t have taken 5 years. Do you homework and be that patient who shows up with a written list of questions. I hope you get some answers and feel better soon!

[Paige777]

OP, I’m so sorry that you’re going through this. It does sound an awful lot like chronic lyme (my brother went undiagnosed for well over 15 years, until it started to essentially shut his body down). If, by any chance, you are anywhere near Cape Cod, MA, then do look up the new Lyme treatment facility which just opened in Mashpee. They use a whole-body approach - antibiotics, dietary, massage, etc. - to treat. They’re the first place that has really started to help my brother.

I have fibromyalgia, which has really flared up within the last few years. I’ve watched my world shrink, and am trying to prepare myself career-wise as I don’t know if I’ll be able to drive into an office in the next 5 years or so. I know how frustrating and scary it is to struggle with major medical issues - please feel free to PM me if you ever want to talk.

I hope that you find some answers soon. And don’t stop advocating for yourself - I saw different doctors for 10 or so years who all dismissed me (some admitting “I don’t know what’s wrong with you, I can’t help you”) before I finally found the right team of doctors who would listen and who could help me. You will get answers; keep fighting.

[Wonders12]

Keep on track and be an advocate for yourself.

But don’t discount Eastern Medicine as well. My mom had a similar experience in her mid-20s, except she was even sicker. My dad describes it as, “I was watching her die and all the doctors were saying there was nothing wrong with her.” So as a last ditch, “what do we have to lose?” effort she went to a chiropractor who also studied a lot of Chinese Medicine and used herbs, diet, etc. in conjunction with chiropractic work.

I forgot what it is now, but the chiropractor told her she had a lot of intestinal and circulation issues. She put her on a very strict diet and overtime she was able to add in more foods following a program. She got better. Even 25 years later, she will still revert back to a modified version of that diet when she isn’t feeling well, and uses the herbs and natural medicines the chiropractor had recommended. Growing up, my sister and I would often see her when we were feeling off, either skeletally and physiologically. As a kid, we called it witchcraft.

She had another similar experience with a shoulder the doctors said could only be helped through surgery (after she underwent years of pt), but an acupuncturist was able to return her to nearly full ROM after several sessions. (Although he did admit that it was a bad case and he didn’t know if he could help.) Recently I injured my thumb on a bucking horse, and doctors said I would have pain & decreased ROM permanently or at least for many years to come, but the acupuncturist was able to help it significantly during the 2 sessions I fit in while I was there on vacation. (I still have slightly decreased ROM that only I notice, but much much better than before, and no pain.)

Western doctors are amazing. Keep on that route. But seek other alternatives too. You might be surprised by the results.

[suz]

About brain mris–I’ve had quite a few since 06. Each and every time it is noted that the white matter in my brain looks like I am either very elderly or have MS or Huntington’s disease–don’t look that one up—it is terrifying.

On my last brain mri, it was also noted that chronic lyme could cause those changes, much to my relief.
I now know that MS and Lyme are thought to be closely related, and fibromyalgia is probably too.
And to think that the USA government brought it here deliberately.

[Sister7]

I would be finding a doctor who specializes in functional medicine. They do a lot of testing to find the root cause of your symptoms.

This was a very educational podcast about Lyme and might be helpful: http://chriskresser.com/diagnosing-and-treating-lyme-disease/

[Magicboy]

Have you thought about going to an ER with your symptoms? Pick a slow time, be really clear about the vertigo, etc and my guess is that they will run a bunch of tests for you then and there…ask for Lyme testing along with the other blood work. It will be more expensive, but you won’t have to wait on appts to get tests done

Hang in there!

[Simkie]

Is it really that untenable to order your own Lyme testing and take that to your doc of choice? Surely there are labs that will test without a doctor order?

Ah, yes. Indeed there are.

http://requestatest.com/lyme-disease-testing