i have been diagnosed but i don't know what to do from here??

[whatnow24]

hello all hope to find you well, i am a 21 year old female, i have had on going problem with my  knees back pain shoulder pain neck pain hip pain ,you name it i have it . the problems i am having started when i was 11 years old i had chronic migraines, requiring  hospital visits cat scan after cat scan , when i was 14 i fell and subluxed my left knee out of no where , then again at 17, then again at 18 had surgery had a lateral release with chondroplasty, while all of this was going on i was having severe pain in all joints my back legs and started to notice at night that my legs had these feelings like i had to keep them moving, i was in pt for my knee injury , when i stared feeling like i threw out my shoulder , my therapist helped me ice down knee and heat shoulder  she thought i strained it, the next morning i couldn't move it, couldn't lift more then 5lbs , still have flare ups to this day , my PCP diagnosed FMs , where convince it is i have had the Lyme disease test lupus, Ra, ms , thyroid, there are some I'm forgetting but i also had bone scans all results negative, well now i have a new PCP ( change in insurance) he doesn't believe what I'm going through, he also doesn't believe in pain relievers of any kind but is willing to send me to a rheumatologist,and if he confirms it he'll send me to pain mg mt, i have been going back and fourth with this for about 6 months i see my new doctor the 30Th besides ibuprofen and smoking marijuana on occasion i need to know what should i ask the doc and the rheumatologist, as i type this I'm on the verge of a complete meltdown i hurt from my neck to just below my calves my hip is killing me , i cant lift my arm to use the mouse i feel like my shoulder is separated  my knees when i bend then for anything feels like i got pinching and burning at both , mind you i only had injury to 1 , i have taken cymbal it doesn't work, very bad mood swings, amitriptyline does nothing at all lyrica works but I'm on pa access , plus ( medicare) which i have to suffer till i see pain mg mt , because the medicine is expensive, any suggestions will be helpful Thank you Roni

[WitzEnd1997]

Dearest What...I have Fibro and my 21 year old daughter does as well.  Strangely she too has been plagued with Migraines and in late grade school severly dislocated her patella 'out-of-nowhere'.  You've gotten some good responses.  Your age alone is going to make it a little more difficult for you to get a responsive doctor.  Do try to read as much as your condition will allow.  And if you're not assertive, practice in the mirror or with a friend describing your problems as if you're seeing the Board Certified Rheumatologist for the first time.  (that doc would be first choice.  Maybe even a ER would help you see the staff Rheumatologist at that hospital.  I don't know your total financial or doctor access situation)  I redcommend you write down your symptoms and abbreviated, concise history.  Docs have a habit and esp the in-take nurse, of listening to the first 1-3 things you mention and then they don't get the full picture.  You need to make your doctor visit count.  Not get caught in the typical partial help with the doc asking you to come back and come back for more completel help.  Get your time and monies worth.  Don't let him/her walk out without hearing you.  BUT if he/she doesn't take you seriously, that too is a colossal waste of time.  I will try to send you some info out of a 3 part posting to kitonthemoon regarding finding a doc that will help.  You're welcome to send me specific questions which I'm glad to respond as best I can.  I am so very sorry you are dealing with this at such a young age.  It's very difficult to watch my gal deal with it.  BUT you can.  Like I suggested to someone else.  Get a good diagnosis, get educated, accept you have to modify your life to work with your ailments, make a strong plan and then implement it.  Since you are young, you won't have 40 years of habits and family demands based on the old you to deal with.  You can set the terms of the rest of your life. I truly believe that. Sounds like your first challenge is securing professional help.  Make that your full-time occupation if possible.  Without your health properly dealt with, (it'll be okay that your health isn't perfect) you won't have as good of access to the other dreams in your life.  The good news is you can do something about it.  Golly, I find young folks deal with this so much better than us older folks. I wish you well with your challenges.  I'm betting on your success.

[designgyrl]

Hi Roni, I'm so sorry  I read your other post on the chronic pain before I saw this one.  You are in so much pain, ok, so have you  not seen the rheumy or have you?  I was a little confused on that?  But if not, you need to have all those tests run by a rheumatologist.  Also, it sounds as though your legs not settling down is Restless Leg Syndrome, but oh my goodness, you have had quite the issues.  Your new doctor doesn't believe in your pain, was that what you were saying, I know your in pain if he's not providing you anything but ibuprofin and a little bit of marijuana, now I can't say I agree with that, but if it's to help you from hurting so badly then I'm ok with that, but only for that purpose.  You really need to see the Rheumy and the Pain Doctor as soon as possible. I know your from Pennsylvania and I don't understand your insurance so I'm sorry about not being able to help you out, have you tried going to a teaching hospital and getting the lyrica there, their medication is very cheap there.  I sounds as though tantanka has a great phone number to help with lyrica, have you tried surfing the internet to see about possible coupons.  Sometimes they will put them out there.  But I wish I would have read this post first instead of on the chronic pain, but that's the forum I'm on.  I hope your appointment goes well, and you start to feel much better.  You certaintly deserve to feel better than this.

Hang in there,

Karen

[tatanka]

I've included information about the " Patient Assistance Program" thru Pfizer. They are the makers of Lyrica.  I have received medication from their program when I had no prescription benefit. Lyrica is on the program list(as well as several Pfizer products).

Call 1-886-706-2400

Or visit the Lyrica website:
www.pfizerhelpfulanswers.com

I'd start by calling Pfizer. And follow-up on geminigirl1963 suggestion about contacting Medicare. The Medicare Prescription Part D program also has an additional  "Extra Help" program for people on limited income. I'm on the Extra Help program and pay a small co-payment for my medications.  

It's a cliche, but hang in there.

[geminigirl1963]

A rheumatologist is definitely the right type of doctor for you to see - they typically have the most experience in dealing with fibro patients, although not ALL of them treat fibro patients, so you may want to contact their office to make sure they do.  I'd hate for you to wait until your appointment day, go and THEN find out they don't treat fibro patients and end up having to wait for a different doctor's apointment.

Some rheumy's will treat their chronic pain patients and others want them to be followed by a pain management doctor, so it's possible that when you do see the rheumy, that you won't HAVE to be referred to pain mgmt by your PCP or the rheumy.

The feeling you're having in your legs at night sounds like restless leg syndrome.  Some fibro patients have this, however you do not have to have fibro in order to have RLS.  I get it some times, but not all the time - I do know there are some medications that can help with it, but I've not tried any of them since it doesn't happen to me all the time.

there are many different medications and therapies that doctors use to treat the symptoms of fibro - as I'm sure you know, there is no "cure", so it's a matter of treating symptoms.  The best thing you can do is to tell the rheumy EVERYTHING that you have tried in the past (medications AND PT, etc) and how it has helped or not helped and any side effects/reactions you have had to them.  Most fibro patients need a combination of medications and/or therapies to help relieve their symptoms.  It also quite often takes a good bit of trial and error to find the right combinations, so it's important to try and be as patient as possible while you and your doctor work together to find what will work for you.

Might I suggest, since you're experiencing some difficulty in remembering things because of your pain (it's also a common symptom of fibro - we call it fibro fog), that you make a list of the things you have tried in the past, any current meds, all your symptoms, tests you've had, etc.  That way you'll have it to refer to when you're in with the doctor and there'll be less chance of you forgetting to mention something to them.  I do this quite often for doctor's appointments, even though I see the same doctor pretty much all the time.

don't be surprised if the new rheumy repeats some of the tests you've already had - especially blood work.  It's not uncommon for the lupus test and some of the others to come back negative several times before finally coming back as positive.  Ihad the test for lupus either 3 or 4 times with negative results before it finally came back showing positive.

Do you have the Medicare Part D (prescription) coverage?  If not, I would suggest you check into getting it.  It has really saved me a LOT on my prescriptions.  There are a number of different plans to choose from - some have a small monthly fee and others do not.  The amount you pay per prescription also varies.  You can get more information about it either on the social security website or the medicare website (www.socialsecurity.gov or www.medicare.gov).  If the pa medical assistance doesn't help with prescriptions, this would definitely be a good thing for you to look into - I know how expensive some of the medications can be, especially the newer ones.

Best of luck and please keep us posted on how you're doing.  Feel free to ask me any questions you may have.

[whatnow24]

I'm hoping it will be soon , see where I'm at the specialist is like 100 miles away and that's hard with no car , i was on the cymbalta for 3 and a half months , it messed with my mind so bad i became violent, and almost got arrested, not a good thing , spent  a week in physic  ward to help with the switch which was not good, i like the lyrica it works but we were in the process of upping dose's  i was getting samples from the old doc while i was taking flexeril and hydrocodone , because with the lyrica i still have this left  knee injury which is a pain in itself, but when the old doc had to be dropped the new one doesn't care he just wants to do things his way which I'm fine with i just hate the wait

[baz5]

You should definately see a rheumatologist so im glad he gave you a referral.
You should also look into any specialist for Fibro in your area that can help you out.
How long were you on cymbalta and lyrica?  I am on cymbalta now but am also trying out Dr.St Amands protocol with Guaifenesin. Im only on my second day...we will see.