Feel like a hypochondriac

Here I am preparing for my upcoming visits to the neurologist, rheumatologist and opthamologist the past couple days and as I'm adding (as I think of them or they happen) to the list of symptoms and questions I think to myself....what's the word I'm looking for...(damn brain fog)...oh yeah...a hypochondriac! I feel like a stinking hypochondriac!!!! I often wonder if that's what my rheumatologist thinks of me when I walk into his office and he says my labs look fine yet I complain of joint and muscle pain, fatigue, etc, etc. Anyway, this is my first time making a list of symptoms and questions aside from my very first visit many years ago and it's making me feel like a major hypochondriac. I'm sure he's going to be thrilled when I walk in his office with this list!

I'm going to take the same list to all three doctors

Symptoms:

tremors (pinky and thumb on Rt hand and thumb on Lt hand), memory problems (saying something like cat when I meant to say car, not knowing where I was when on my way home from dairy queen in my town of 2,500...yes 2,500; not 25,000, and having trouble having a conversation because I can't think of a word to or any word, for that matter, that means the same thing, when I'm trying to have a conversation), headaches/migraines (2 months with little spurts of relief now and then), nausea (off & on), dizziness/feeling of being off-balance (comes out of no where when least expecting it...like when I'm driving and turn my head to see if it's okay to get in the other lane, etc PS not a good time for this to happen), speech issues (using and/or writing letters in the wrong place, saying the wrong words in a sentence ie: cat instead of car, cap, cup or heck even something completely off the wall like pants), insomnia (something very new that happened last Sat & Sun night) and eye fatigue (muscles behind my eyes feel like they're being stretched to far), dry/itchy/burning eyes, restless leg syndrome (also in arms and shoulders) and burning or freezing feet (depends on how they decide to feel that day). Oh and the corners of my mouth were cracked and took 2 weeks to heal using abreva (didn't think it was herpes virus but used it just in case) and when that didn't work switched to triple antibiotic ointment. That only seemed to heal it a little bit and got to a point where it didn't do any more for it so I stopped using both meds. After another 4ish days they finally healed. Rt knee is cracking and popping and sounds like small rocks grinding against one another (a shot of pain will come out of no where occassionally)

Questions:

What can cause these symptoms? Are these neurological? Are these symptoms caused from the headaches/migraines? Can this be related to rheumatoid arthritis, lupus, ankylosing spondylitis and/or schleroderma (the four AI diseases that of which I have one positive blood marker for each)? If on plaquenil and meloxicam how do I still have joint & muscle pain? Can I have inflammation and not be able to physically see it? Can plaquenil make labs look normal? Can any of my symptoms be due to a vitamin deficiency? I take a daily vitamin & D3 2000IU, are there other vitamins I should be taking?

I've decided that just because I don't think something is related to an illness treated by a specific specialist doesn't mean I'm going to leave it off the list. The specific specialist may get more than he/she needs but more is better than not enough. For example, I didn't think it was necessary to tell my rheumatologist (well because of brain fog I could never remember to tell him any way, another reason I'm making lists this time) that I was having issues with my arms and legs falling asleep/tingly feeling/pins & needles. When I finally did, he ordered an additional blood test and found that my blood was clotting too quickly (lupus anticoagulant) and put me on a low dose aspirin at bedtime every night. As you are probably aware, clotting too quickly can have a number of negative affects (blood clots, heart disease, etc). That's when I realized it's probably more important than I think it is to tell ALL...just LAY IT ALL OUT THERE ON THE TABLE and let him/her be the decision maker of whether it's important or not. My job is to relay ALL of the symptoms and HIS job is to determine the diagnosis. Not that I have a diagnosis yet but we're working on it. lol

Now that it has taken me forever to write this because of all the time it takes to think of the words I wanted to use and fixing my typo's because my fingers migrate to the wrong keys I would like to thank you for listening to my rant of feeling like a hypochondriac.

Does anyone else feel like this? Feel free to share your feelings, rant away at me, or share your symptoms or questions you have for your doctor at your next visit. Heck, your questions may even help me add another to my list. lol Like it's not long enough already.

I would like to add that I am thankful that I don't have the pain that many of you have. And I am sorry that most of you have so much pain to deal with. I would say most of my days are achy but managable. There are some days that fatigue or migraines will keep me in bed but not all over body pain and for that I am thankful. I'm sure my day will come as I'm sure the day will come that I will get a definite diagnosis instead of "chronic myalgia" and "chronic arthralgia". I would like to put a name to whatever it is causing all these symptoms.

Thanks for listening,

Jen

A lot of the symptoms that you are describing sound to me like APS - Hughes Syndrome. If you have tested positive for (LA) Lupus Anticoagulant - that is one of the Antibodies that causes APS - Antiphospholipid Antibody Syndrome. headaches, joint pain, circulation problems, movement disorders, brain fog, memory problems, and a whole bunch of other issues are linked with this disorder. The only way to see an improvement in symptoms is to take blood thinners. They need to get your INR above 3.5 in order for you to see a drastic reduction in your symptoms. APS can also cause "multiple sclerosis" like symptoms. You might have symptoms of movement disorders, but your MRI is clean. This can be another symptom of Hughes Syndrome. APS is not Lupus, but fifty percent of people who have APS will also have SLE. You need to see a Hematologist and look into getting on blood thinners. I think this will fix most of your symptoms. You can do some reading on APS - Hughes Syndrome online. Please bring this up to your Rheumatologist when you see him. Tell him that Aspirin is not enough to prevent symptoms that arise from APS. I hope this helps you some. I also have APS. I just never had any symptoms until my first blood clot.

Dear Jen,

I know how you feel, I've been preparing to see a new batch of doctors at USF, starting with rheumatology, I've been told for years I have severe Lupus with organ involvement, and APS as well as a host of other problems. Looking through my medical records got me to thinking that I could've been misdiagnosed, and medically mismanaged. I say this because I stopped all treatment, until recently I felt ok, now a lot of the old symptoms have come back with some new ones including severe headaches (not migraine) weakness and tingling in arms, eye twitching, balance problems, vison problems, dropping things and some coordination issues as well. My medical training tells me this is more than just Lupus, years ago they suspected MS but when I got the rash in spite of a positive spinal tap and MRI they labeled it as Lupus, now I'm really wondering could it be possible to have both? I'm in pain more and more with spasms that come out of nowhere, I really don't know what to think at this point, except to say I'm really scared , all of this is real and for obvious reasons I have very little faith in medicine but am willing to give it one more shot I just want to know once and for all whats really going on, for far too long everything is always blamed on lupus I'm wondering if they've missed something I at one point even began to believe maybe it was all in my head, thinking I'm a hypochoncriac, anyone that lives with this knows that feeling all to well, I've ignored alot of symptoms for a very long time, now they're pretty much slapping me in the face and its really got me worried. I'm alone 90% of the time, the other day I passed out not sure how long I was out, can't remember what was happening just before, I woke up on the kitchen floor that made me realize I have to keep the appointment at USF, maybe this time we can figure it out once and for all.

Hi

I think I will copy your list,it sounds just like me. Except for the headaches. I think I have 8 specialists Had brain MRI and she said "your brain looks great" then why can't I remember anything! My drs are all in the same "group" so they have access to all my records. My friends want to know if they are using me as a guinea pigLOL. The "memory thing" I blamed on my age. I can't remember how to spell a simple word.

We're always listening

Take care

Cindy

I would insist on an MRI of the brain to rule out AVM, Anuerysm, or Brian tumor. You may be having small bleeds or mini strokes. I am surprised w/ those symptoms your Neuro has not already done this. As well, an assessment of your heart.

Jen...first, good luck @ your drs. appt's. I always make lists, that way you can 'see' what you need to talk to them about. I make a copy for them, to look over first, then we talk about 'each' thing on the list... I've been doing this for 25 years and it works well for me. A few years ago, when I talked to my dr. I also felt like a hypochondriac...but my dr. assured me that 'he' knew better. Do what you 'need' to do, to get all the answers with each dr. You might even need to insist on some tests you think are important. We need to be our own advocate in our health. Again, good luck, best wishes, and feel better.

Many of my symptoms were the same as yours- my diagnosis is SLE with APS, and a migraine syndrome- also lupus related Oh and just to add a little spice a rather large aneurism My APS is controlled with aspirin and control of the lupus and migraine have made me pretty functional Aches and pains- yes you can have them in spite of NSAIDS and plaquenil- they only help minimize them but don't prevent

I have every symptom you mentioned. I have lupus, fibro, osteoarthritis. All autoimmune diseases r similar and sounds like you have arthritis plus another at least. A good rheumy will sort it out. It does take time though. I’m on 50,000 u vit d a week. Blood level was 12. Causes bone pain and fatigue. Lip sores I get from being allergic to a food. For me it was sherbet lol. Can also get lupus cutaneous disease that causes sores also which a dermatologist can biopsy and prescribe creams. Three months I waited to go to one, and in days all my different sores were gone.

Jen,

Thank you for posting this. As I was reading it I glanced over at my desk and saw the 'list' I took to my rheumatologist just yesterday. I too feel like a hypochondriac with my 'laundry list' of ailments, and I even added to that list during my doctor visit. I must say that making a list helped me convey all the issues I needed to, which due to 'brain fog' I surely would have not been able to do without my list. I was prescribed amitriptyline to treat the insomnia I have been having for quite some time now, we'll see how it works. I have been having a 'flare' the past 8 day's and the 'brain fog' is prevalent today so I'll stop for now. Take care of yourself today and be well.

Patrick

Jen, Im sure many of us, if not all, can relate to these symptoms and the frustration you feel. While reading your post, I was wondering if you have ever been tested for lymne disease? If not, I highly suggest you do, if not just to rule it out. Usually peole with lupus dont have just lupus alone. Most regular doctors will scoff at the suggestion to this test, but insist. Also another thing…seems simple but just as important is have a simple blood test for systemic candida. Among all of my ailments, when mine acts up, i have severe symptoms. When we are this sick, our system gets out of whack and the bacteria in our gut gets out of balance and makes us sicker.

I was tested a few years ago for lymne, even though it was neg, I was pos for mycoplasma and other bacteria and viruses that had to be addressed. So you may need to add one more doc to the list and find a lymne literate one. I know, I hate adding one more too!

Its all food for thought girl…sounds like you are suffering too much. Oh, and the migraines, I have aalso suffered like you…then I gave up grains of all kinds and sugar…bam! No more migraines…unless I get too much sun exposure and I get a terrible flare. Too much sun only means more than five minutes for me. :slight_smile:

Keep us posted!

You are right to make the lists! I think docs like you to be “armed.” My rheummy took a good hour and a half listening to my list. I had everything you mentioned. Plaquenil has helped me ALOT!!!

Plaquenil is a miracle drug. My mouth sores were terrible , I think plaquenil is the reason I am not in pain.

Take care everyone

Cindy

Plaquenil, like prednisone are like miracle drugs...but they both have drawbacks. As long as your drs. monitor them you are alright...but it was my eye dr. that noticed the problem with the plaquenil...the retina in my eyes were effected...so off to the specialist I went...but fortunately it was caught in time, and my eyesight was saved. Like with prednisone...it's good until you take too much, and it gives you severe osteoporosis, like it did me, and my feet and ankle bones would spontaneously brake... Just beware. Feel well everyone

Hi

I had eye problems before plaquenil. It did cause high blood pressure though, I had to cut back to 2. I now have 8 specialists. I think i;m getting good care. It was my opthamologist that told me I

had a TIA.

Cindy

Just a couple things. Any other meds besides plaquenil and mobic? Medications can cause confusion and memory problems but of course lupus can as well but it is something to look at. Also the the angular ceilitis (cracks at side of mouth) can also be causes by many things. Could be fungal,bacterial, inflammatory, vitamin deficiencies etc. People tend to over look Vito deficiencies. I had it once and I increased my vitamin B(especially B12) and it helped.
And yes, I know the hypochondriac feeling. I never will forget when my husband was asking if I had a headache. To which I responded “just my normal headache”. (I pretty much have a low grade headache all the time, just sometimes I have migraines). Anyway he told me that there are no “normal” headaches and urged me to tell the Dr. That is when I realized I am also afraid of being labeled a hypochondriac. There are so many things that come up in conversation with my dr of almost 15 years that bother me. He will ask when it started and I will tell him years ago. I just compare it to some of my worst times in the hospital and in light of that other things don’t seem to be important. But they are important! So many of the symptoms that we have can be medical “clues” that can help our Dr understand our condition better.