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Posted 9/22/2014 9:17 PM (GMT 0)
Hello, my name is Emily and I am new to the forums. I am a college student and started experiencing symptoms this year. I saw my GP who ran tests, with the only thing turning up as a positive ANA. Thinking it may be an autoimmune issue, I was referred to rheumatologist. I've been on the wait list for 2 months and my appointment is coming up on October 19th.

I am not sure it is an autoimmune disease, and my doctor had mentioned possibly fibromyalgia. The only symptoms I have are awful windespread pain and extreme fatigue. I get an awful burning sensation in my muscles around my neck, knees, arms and lower back. The pain kind of feels like tendinitis pain, that same kind of burning. I've tried Cymbalta, prednisone, OTC pain meds, massage therapy, ice baths, aromatherapy, even broke my morals and smoked pot in desperation. I've received no relief, except from Tramadol, which is actually prescribed short term for a knee injury, but I've been using it for my body pain (and I am HUGE anti-drugs person, so I feel like my pain is causing me to break all my morals and values.)

I've had to quit my job because of the pain and have considered dropping out of school because my grades have dropped and I've failed 2 quarters. I'm at a point of desperation and am doing my best to prepare for my appointment in October. I don't know how to talk to the rheumatologist, or if she will even help me, and I am extremely worried about what I will do if she says there is nothing she can do. I CANNOT live like this anymore.

My question is, how do I prepare for this appointment and make the most of it, as I have waited 2 months? How do I express my issue of pain? I worry of being labelled as a drug seeker, mainly because it is a big problem in my area and I'm a college student. Truth be told, I don't want to be on pain meds, I just want an answer. But I can't wait any longer for tests that show nothing.

Any advice is much appreciated, thanks for reading.
Posted 9/22/2014 10:52 PM (GMT 0)
Hi, Emily, and welcome! I'm so sorry that you are dealing with all of this. Trying to go to school is even more difficult since I'm sure the fatigue and concern over how you are feeling is taking center stage. The symptoms you mentioned are seen in fibro patients but there are other illnesses that have many of the same symptoms as fibro so I'm very happy you are seeing a rheumatologist soon. They will run you through a myriad of tests to rule out the other illnesses before a diagnosis of fibro is given.

Fibro isn't considered an autoimmune problem last that I read. We do have members with fibro that test negative for autoimmune disease. I test positive but that's because I have other health problems that are autoimmune illnesses. Plus, a positive ANA doesn't mean you have an autoimmune illness. Here is a link that will explain it.

https://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Antinuclear_Antibodies_(ANA)/

You should keep a pain journal to show the rheumy. There is a link in Fibro 101 that has several pain charts. Pick one and use this to describe your pain when you do various things. Then take the journal, along with a copy of the pain chart that you used in your journal, to your appointment. This will help the doctor really see what you are dealing with. If you were given the Tramadol recently for a knee problem then you could say that when you use it, you have less pain. Otherwise, don't mention that you have been taking it for this overall pain. Doctors don't like patients medicating themselves with drugs that weren't specifically prescribed to them for the illness.

Once you receive a diagnosis you will get the help you need. If you do have fibro we sure can help you here. I don't like taking drugs either. With fibro what works for one doesn't necessarily work for another. It's a trial and error type thing. For example, ibuprofen with food helps me but Tramadol did absolutely nothing for my pain. But there are a couple of supplements that help many here including me. They are vitamin D3 and magnesium malate. I also use a prescription muscle relaxer that has helped me significantly. The bottom line is that once you get in control of your pain, you can live a full and enjoyable life in spite of this illness! I know because I have.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. You just might see yourself too. Good starting links for you would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. There are links about the supplements I mentioned and how they work in your body so do check that out, too. All the links are good so do read them.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon and do let us know how your appointment goes because we do care about you.

Sherrine
Posted 9/22/2014 11:12 PM (GMT 0)
Welcome to HW.
Sorry you're having to deal with so much pain.

Are you having any swelling? Swelling mean autoimmune.
I hate medication but due to all of my problems I take 16 pills a day. :-p

I hope you get good news at the visit. Try not to worry until you see the doctor.
Posted 9/22/2014 11:26 PM (GMT 0)
Make a list.

Prioritize it. What is important to you? What is less so? Be specific.

Don't get anxious if the doctor tries to move you along. Get the answers. I also take notes at appointments, but I'm a dweeb. But I do tend to forget things, so this is the safest way for me to ensure I understand.

Make sure you bring a list of your current drugs. Also, make sure your rheumie has your files/test results/other doctor's notes.

No one likes drugs. Well, okay, that statement is a little naive. Most people with chronic conditions would prefer to NOT be medicated and well. And that statement is akin to sightings of the yeti wearing fairy wings.

At a certain point, medication enables you to live your life.
Posted 9/22/2014 11:48 PM (GMT 0)
Do you have someone to serve as a medical advocate who would go with you to the appointment? It often helps to have two pairs of ears.
I am sorry you are dealing with this at such a young age.
HEART
Posted 9/23/2014 12:20 AM (GMT 0)
Hi and welcome!

Yes, taking notes before seeing a doctor is a biggie, I think.  I write down every question/concern I can think of and bring it along to my appointment, too.  If the doctor is willing to listen (and obviously, if your list isn't a mile long), that's likely a positive sign that he/she may be also willing to work with you.

I really dislike taking meds, too.  Don't we all!  One thing my doctor did which I really like was to give me a refill for Neurontin (gabapentin) using 100 mg capsules, rather than the 300 mg capsules I had previously.  I would guess you could do the same for most other meds, though I'm not that familiar with that many others.  I can sometimes 'eek' by with as low as 100 mg, which makes me a lot less groggy than the 300 mg (I seem to be very sensitive to most medications). 

 Some people have tried herbal remedies, too, but of course, you have to check them out thoroughly for allergic reactions and other negative interactions.

If possible, try to pace yourself.  I find it helpful to alternate sitting with standing, if I'm in a flare.  If I'm in a really nasty flare, sometimes it just helps to rest a lot more (not easy when you're a student, I know!).

Is there someone you could talk to on campus about changing your schedule somewhat so you don't overdo?  Just a lighter class load may help.  I know one of my adult children is really happy because he doesn't have any evening classes this semester! turn

You've tried several things for pain, but have you tried a 'bed buddy' (microwavable and filled with rice, or ??)?  A heating pad or warm shower can loosen muscles, too.  And I've learned it's best to keep moving as much as you can, without overdoing.

This is a great, supportive forum.  Hope you continue to post.  Also, I've found it helpful to look up various subjects related to fibro in the search box above.

Wish you the best!! :-)

Posted 9/23/2014 3:14 AM (GMT 0)
Hi emily,

If you have a medical need for medication , like fibro... We would all rather never need a medication, but you also may need help to have quality of life..with less pain..my drs wife has fibro, so he put me on tramadol early on...i do not use a lot but it has helped me with pain, so i could do much more over time..

One thing i would be sure to discuss with the dr... Is what your pain levels are from day to day, do you also have stiffness?

I get a lot of help from topical pain relievers also, such as bio-freeze, pain erase, soothanol x2

Physical therapy from time to time is helpful

Just remember it is treatable, take the help so you can move forward with your life.

As you can between now and drs appt, try to do gentle stretching to keep things moving as well as possible..those of us dealing with this disease know you have to keep the muscles moving as much as possible... Pace yourself, use heat or cold whichever feels best to you, but most of us prefer heat.

My daughters fibro began in college, she s in her 30's now..she works out, takes advanced pilates and yoga, works full time, and travels. You can do this !

Lj
Posted 9/23/2014 10:13 PM (GMT 0)
Welcome to the forum. I hope you find this forum very helpful as I do. That is great your on the right tract seeing a rheumatologist. Have your questions ready for the Dr. Don't be afraid to talk about pain control. I know the pain and the fatigue is the most difficult thing to managed. You can do this by natural remedies if you don't want to become dependent on pain meds. Educating yourself about fibro will really be beneficial for you. There are so many ways you can learn how to managed fibro if you become diagnosed.

Hopefully once you get your diagnoses you can start working on goals on how to treat this. Hopefully you can get back on your feet and enjoy life again. I had similiar circumstances and didn't know where to turn. I just happen to land on this forum. It has taught me so much on managing my fibro. I pick up so many valuable tools about fibro. I put them to use and developed my own treatment plan that works for me. Most of them are natural remedies, but I do take a few meds to get me along. Seems like muscle relaxers do a lot of people good.

I hope you visit again. Please let us know how your appointments goes.
Posted 9/23/2014 10:43 PM (GMT 0)
Hmmm. As for the college question.... as a former professor talking, it might be time to drop a class. Seriously, take some of the pressure off yourself until you get a grip on whatever is happening. Re-assess. Drop something that you can make up easily, at a later date. Depending on where you are in terms of credits needed to graduate, both general studies and major credits, this can quite easily help you. You do need to check ASAP to make sure your school will let you drop with a W (Withdrawal) and no grade penalty. Some schools have a lenient policy and have a later withdrawal date. Others get you with an earlier date where withdrawal turns into withdrawal fail.

You will not want that fail on your transcript, bringing down GPA.

Students tend to think positively (sometimes a little too much) and say things like "I can make it up! I'm just a little behind." DO not fall into this way of thinking. Be proactive, rather than reactive. Dropping one class now will greatly benefit you later.

Secondly, if you need to drop more than one class, your school will have a dean of students or a counseling center. Check in your school catalog for something along the lines of, "Withdrawal illness" or medical withdrawal. You will need your advisor to back you on this one, again depending on the school, or the policy. They will vary widely.

My only other last advice is spring registration is right around the corner! Make your plan CAREFULLY, thinking about workload, distance of buildings, time of day, anything that will impact you. Careful planning will get you far.

Okay, I lied. Schedule management to get through the semester will also help. Look at due dates, write them down, and schedule out what you need to do. Do this until the end of the semester, so you get no surprises. For instance, major paper due last day of class, schedule two hours a day for it starting ten days ahead. You would rather have too much time rather than too little. No cramming (which doesn't work), no late nights, take good notes. All those 'study' tips we all hear, you will need them now.
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