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Trying to "diagnose myself"
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Trying to "diagnose myself"

I have an appt on Feb 3 with a rheumatologist, but until then, I must sit and hurt every day.  I got my doc to give me some pain meds in the meantime, but they wear off and then Im back to square one.  I'm having very painful muscle and joint pain.  My entire back, my neck, jaw, shoulders, fingers, toes, wrists, knees, and lately ankles.  It hurts to touch my arms and legs and I am having shooting pains in my thighs.  I also have chest pain (constrochondritis and pleurisy).  Doc said my blood tests showed some inflammation, and she sent me to this rheum. But, as I wait, I wonder what it could be.  She mentioned lupus, but I don't know.  I also have abdomnial pain and just got a UTI out of no where..... Trying to see if all of this is connected or not?  Any ideas?
Tags: fibromyaliga, knees, jaws, Arthritis
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Avatar_f_tn
I'm sorry to hear you're having a rough time.  I'm glad that you've already got an appointment set up with a rheumatologist - it definitely sounds like that would be the best type of doctor for you to see for a proper diagnosis and treatment.

As I'm sure you already know, it's impossible for anyone to diagnose you over the internet.  Your symptoms could be indicative of a number of things - a systemic infection, an autoimmune disease, etc., etc.  That being said, while it's impossible for anyone to diagnose you over the internet and I certainly am no doctor, the two things that popped into my head as I read your symptoms were fibromyalgia and lupus.  I, myself have both and suffer from many of the symptoms you've described.

One thing I would definitely suggest is before your appointment with the rheumy, be sure and spend some time out in the sun - if you can do it both the day before and the day of your appointment, that would be best - you don' thave to spend hours and hours outside, but if you could spend an hour each of those days, that would be good.  The reason behind this is that in some patients, the tests for lupus do not immediately come back as positive, however, some patients find that spending time in the sun before having the bloodwork done can cause a rise in their ANA, making a lupus diagnosis easier.  It is, however, not 100% - and it's quite common to have at least one, if not several, ANA tests come back negative before eventually getting a positive reading.  Therefore, I'm suggesting spending some time in th sun, as I'm suspecting the rheumy will be doing some bloodwork to test for lupus, as well as other conditions.

As far as the pain medication goes, unfortunately, that's how pain meds work - you take them and they help with teh pain, but when they wear off, you're in pain again.  I'm presuming your doctor has given you a short acting (usually 4-6 hours) pain med rather than a long-acting one, which typically lasts for about 12 hours.  Long acting meds may eventually be needed, however, doctors don't typically start a patient off on them until they've tried the shorter acting meds to see how they work and also until the patient becomes more opiate tolerant.  STarting a patient off on the longer acting meds immediately not only increases the chances of side effects in the non-opiant tolerant patient, but also decreases the options for increaed pain control/meds in the future.

There are many medications that can be used to help with the symptoms of either fibro or lupus - both narcotic and non-narcotic.  Most patients find that it takes a combination of different medications and other therapies (PT, ice/heat, gentle stretching, etc.) to get the best relief, so don't be surprised if your doctor wants to try several things before deciding on the bestcourse of action.  Also, every person is different and fibro and lupus can both affect people differently, so what may work for one person may or may not work for you.  So while it's good to get other's opinions and ideas for treatment/s, try not to get discouraged if what they suggest doesn't work for you.  Just keep working with your doctor and keeping them informed as to how things are working or not working for you.

By the way - I noticed you were in Virginia - wherabouts?  I also live in Virginia - I'm about an hour north of Richmond.

Best of luck and please keep me posted on how you're doing and what you find out from the rheumy.
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Avatar_f_tn
Thanks for your comment.  I'm gonna take your advice and get some sun a few days before the appt.  Also, I will see what happens with the meds.  I do have the one that I need to take every 4 hours, so.... you are good at this!  

I know I can't get diagnosed over the internet, but it so frustrating that every other day it seems like I have new symptoms and I still have to wait until February.  And by the way, I got the referral before Christmas, so apparently this doctor is quite busy, so here I am waiting..... in pain.  But, It'll come sooner or later.

I am in VA.... However, I am about three hours from you in the Beach!  Thanks again for your concern and I'll let you know what goes on!
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Avatar_f_tn
No need to thank me for anything - unfortunately, I've learned what I know about this stuff from personal experience.  I was diagnosed with fibro about 15 years ago and lupus about 7 years ago.  Both can definitely be very difficult to deal with sometimes - especially when you're in pain and waiting on an appointment or call from your doctor.  You're so right that it gets very frustrating when it seem every day (or every minute sometimes) a new symptom pops up.

It's also unfortunate that it's not uncommon to have a long wait for an appointment with a "specialist".  There's actually not all that many rheumatologists here in VA - at least not close to where I live - so they do get booked up pretty quickly.  One thing you might want to try is to call their office and ask if they keep a cancellation list and if so, if you can have your name put on it.  Many offices do keep these so that if they have a patient cancel their appointment, they can start calling people who are on the cancellation list.  It might be a way for you to get in earlier, however, keep in mind that it may be a last minute appointment, so you might not necessarily have the opportunity to spend time in the sun like I had suggested.

Some non-medicinal things that I try to help with my pain are ice and/or heat (I usually start with ice to kind of numb the area that's huritng the most and then got to heat to help relax all the muscles) - warm showers are good too - you can just kind of let the warm water run over the areas that are hurting - or even soaking in a hot bath sometimes helps.  Gentle stretching can sometimes help with stiffness that can add to pain - but go easy on it at first - little bits at a time so you don't end up hurting worse.  Also, doing whatever you can to help yourself relax can help - not only to relieve the stress of feeling bad, but the more you can relax, the better your medications are apt to work.  Sometimes I put on some soothing music, turn out all the lights, tv, etc. and just lay down in bed and try to get my body to relax.  I know how difficult it can be to relax when you're in pain, but it sometimes really does help - like I said, at least sometimes it'll help enough until my medication kicks in. Another thing that might help a little are those patches like Icy Hot patches or something similar - with those you can place them where you are hurting the most and get more direct pain relief.

As far as your medication goes - pain meds usually work better if you don't let the pain get too far out of control before you take it.  So don't try to be the hero and tough it out until it's competely unbearable - you'll only end up getting frustrated because it'll take longer for the meds to help.  Of course, I'm not saying to take the meds any more often than what they are prescribed - or in larger doses - only saying that if you take them when you're in pain but before it gets to an almost unbearable point - you might have better results from them.  Some people also find that adding something like ibuprofen in with their pain meds help them to work better.  Again, of course, don't add (or remove) anything before checkikng with the doctor who prescribed the meds for you.

Again, I wish you the best of luck!  Try to hang in there!
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Avatar_f_tn
Thanks for all the helpful points.  Gonna try to deal with it.  Already called for a new appt, but since I am a new client, they have their policies about waiting...... and thee haven't been any cancellations for any other new patients, so..... I'll manage.  My only problem is the "resting" thing because I am a Stay at home Mom with a 3 and 4 yr old.  So, I gotta keep them entertained (or they will tear the house up), so I usually can't get rest until my husband gets home in the evening from work.  So, anyway, I will work it out somehow and hang in there.  Thanks again!
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