Undiagnosed. Pain and more.

I got the idea that this might be a good place for me to look for help/support. I've been trying to find out what's been causing nearly 3 months solid of symptoms, but no luck so far...test after test is negative.

I have joint aches all over, especially in my knees, but without any obvious inflammation. Sometimes the pain is bad enough that I can barely climb stairs at night. I get sore muscles, too, but to a lesser degree. I have a lot of trouble with fatigue, some days being completely exhausted at the end of work, or waking up after 8+ hours of sleep and feeling like I haven't slept. It's not always that bad, but I'm tired almost all the time.

I also get tingling sensations, especially in my feet, my left arm, and my face. My face comes with redness, and it sometimes progresses to numbness. Caffeine may make it worse, but it only seems to be loosely related. I experience "brain fog" and poor memory, too. I just can't concentrate on things as well as normal, can't do mentally taxing activities for as long as normal, and despite making more lists and relying more on my phone's calendar reminders, I keep forgetting things.

I'm having trouble at work as a result (I also am very unhappy with my job and want to get into a different line of work), and have trouble keeping up with stuff at home.

I have Crohn's disease (diagnosed July 2012), and I seem to have just entered into a flare in the past week or two despite medications...otherwise it has been pretty well controlled. I also have migraines and glaucoma in my left eye. I had Lyme disease in the spring, but I've been tested 4-5 times since then, with 3 different types of tests, and tested for co-infections, all negative. It was a bad infection, with neurological and cognitive symptoms, so I wonder if it may have done some lasting damage.

I've had blood tests for rheumatoid factors, Sjorgensen's, indicators of Lupus, thyroid function, other organ functions. Results have been normal/negative. I'm getting a few things tested again. I'm really frustrated with not knowing, not being able to get any treatment or even a diagnosis, so I can at least say, "I have this condition." I'm to the point where I'm not even thinking about getting "cured," just getting diagnosed.

I've had some of my own suspicions about what's going on with me...maybe Chronic Fatigue, maybe a worsening of the Crohn's and related symptoms? There are some vague similarities to MS as well, but a lot of symptoms that don't fit, too.

My first thought was MS from reading your post, though so many auto-immune disorders have similar symptoms. And I'm not a medical professional in the least.

At any rate, I'm sorry you're in pain, and glad you found this forum. Welcome, you'll find tons of support here.

Fibro is the first thing I thought of. They make a diagnosis by physical exam and the elimination of other things by using diagnostic test results like GoAskAlex mentioned.

A history of wide spread pain that has persisted for at least 3 months. The pain may fluctuate in intensity and may not always be present.

The are 18 tender point sites located on each side of the body at the:
-Occiput (base of the skull);
-Low cervical spine (back and side of the neck); Trapezius muscle (shoulder);
-Supraspinatus muscle (near the shoulder blade); Second rib (top of the rib cage near the sternum or breast bone);
-Lateral epicondyle (outer aspect of the elbow);
-Gluteal (top of the buttock);
-Greater trochanter (below the hip); and
-Inner aspect of the knee.

You should have at least 11 positive tender points bilaterally (on the left and right sides of the body) and both above and below the waist.

I've wondered some about fibro, but I don't seem to have any of the tender points. I think one or two doctors have checked for some, but they haven't specified outright. I've tried to check on myself, but I don't know if it's one of those things where the sensitivity isn't bad when you're controlling it. My BF's mother has fibro, and he said that her symptoms are different from mine. But I know it might not necessarily be the same for everyone. Touches and such aren't painful or uncomfortable for me...I just have aches and pains that are kindof there. But I'm not crossing it off of the list of possibilities.

I think I'll keep asking my doctors about the possibility of MS. Not that I want the spinal fluid sample or whatever it is they do to test for it...but I've also had ringing in my ear on a regular basis, and I think I read that's often something that occurs with it.

I've been to a LLMD (he does research, in fact), that's where I got more than the standard Lyme test (two different types including igenix) and tested for coinfections. It was all negative, though. Neither he, nor any other LLMDs in my area accept insurance. He was one of the more affordable and most of the others I really don't like the sound of, or else have months long waiting lists. I'm just not very positive about pursuing that option again. One of the things that I've read is that Lyme can set off other autoimmune problems, so that would explain having issues arise post-Lyme.
As far as a lot of natural stuff, I have to be very cautious because of the Crohn's disease. Various herbs and stuff that most people wouldn't have to think twice about I have to research carefully because I will be extra sensitive to; some are even dangerous for me to take. It's a whole lot of research I just don't have the energy to delve into. At least it's pretty easy to find info on meds these days.

I have been to a rheumatologist. There aren't many near me, but he had good reviews. He said Celebrex might help me, but would have to run that by my GI because of the Crohn's. Although I don't have an official answer yet, just looking at the possible side effects I'm pretty sure I can't take it.

I'm finding myself mentally not as "with it" in the past couple of days. Maybe some of it is just stress, work is really hard to deal with right now and it's a high-pressure time right now, too. Yesterday I found myself twice struggling to do things I should normally be able to. I've been waking up feeling physically wrong, too. Not in pain, and it's not anxiety (I've had some experiences with anxiety, and I know that feeling now, it's different)...something just feels very much not right. It fades after a while, and I either go back to sleep or I get up and start my day.

Were you ever treated for the Lyme? Our son gets severe pain in joints and can hardly walk around the kitchen - until he gets put on a couple of weeks of doxycycline again. That does the trick.

Unfortunately sonny got treated originally too late, thought he would get over it himself, then didn't finish the whole treatment. That is why he gets the Lyme flare-ups. The bug hides within certain cells in the body, like many other illnesses do. (I have post-polio syndrome.) That's why it doesn't show up on tests.

If you read some of the scientific Lyme sites, you'll see that others get relief from doxycycline too, but some docs put their patients on it permanently.

It's a cheap fix and doesn't give most people too many side effects. If you don't tolerate that med, there are others that work also. Worth a try.

Post Edited (Alcie) : 11/22/2014 3:53:05 PM (GMT-7)

I was treated twice for the Lyme. Doxy in May, and had the Herx reaction where I got worse for several days at first before improving. 30 day course. Then in July I was noticing symptoms again and felt that instead of two steps forward, one back, it was one forward, two back, so returned to the doctor. I was given a 30 day course of something else...I forget the antibiotic, along with another med to keep it in my system longer. They said it makes it almost as effective as IV treatment. I improved again and was feeling back to normal (such as it is for me) aside from spraining my back in August.

It didn't last long, though. Went back to work in September (I'm a teacher) and started getting symptoms, some same, some a little different, as well as bowel trouble. Went to my GI thinking it was a Crohn's flare, he suspected a C diff infection. I can't remember the test results. But he treated me for it since that abx also helps with Crohn's colitis symptoms for whatever reason as well, and I improved on that front.

I hope I havent come off as stand-offish in my replies. I haven't myant to, but I think my frustration at my current situation must be showing. Sometimes I feel a little annoyed to go over the same things again and again, but I have to remind myself I'm sharing my story with new people. I appreciate the input and if I haven't seemed like it...I really am sorry.

Another odd thing I have happen occasionally, reminded because it just happened... my circulation seems to be worse, even though I've lost weight...I'm guessing because its easier to have a limb "fall asleep" when I lean or lay on it wrong for too long, and I get that un pleasant pins and needles, numbness, sometimes even a little puffiness in a foot of it's my leg. For my arm, it's different, and that's what just happened. I was laying on my arm and a couple of minutes after getting off of it, my hand became very weak, it was hard to hold it in a normal position (it sortof wanted to curl/fold up) and I had some muscle spasms. It made a couple of my fingers twitch and a spot near my thumb. That lasted for a couple of minutes and has slowly improved. It's not the normal limb fell asleep stuff...I have no idea what to research it as, tho.

I am usually on the hypopituitary forum and logged onto this forum by mistake . . .

But as I read your thread I thought of the possibility of adrenal fatigue or adrenal insufficiency.

Long-term corticosteroid use, as you may have had with Chrons', can suppress the pituitary gland/adrenal gland axis. The result is low serum cortisol. Cortisol is a critical hormone that acts regulates many physiological functions in the body. It is also the body's principle anti-inflammatory.

Adrenal insufficiency can also have an auto-immune causation (like Chrons'). Having one auto-immune condition leaves one more susceptible to another auto-immune condition.

Adrenal insufficiency is not routinely on a physician's radar of possibilities, as the condition is rare/uncommon. But the condition is disabling. "Brain fog"/altered cognition and poor concentration; severe muscle/joint pain; dangerously low blood pressure with postural hypotension; sensitivity to lights and sounds; profound fatigue, not relieved by rest; GI distress and digestive unease; altered electrolytes, principally low sodium and potassium; et. al.

First step would be a laboratory blood testing of your baseline cortisol and baseline ACTH (pituitary hormone). If either level is low-normal, an ACTH stimulation test would be the next step.

Just an idea to consider . . .

Best to you in health,
- Karen -