Ok... So, I'm a 27 year old student finishing up my doctorate in child psychology. I was diagnosed with fibro when I was 19 years old, and it has changed my whole life. Everything hurts all the time, but I push it down because I do not believe I have this B!@$#$ of a disorder. I am not depressed (outside of pain days), am married, exercise 4-6 times per week pretty heavily, and sometimes work 12 hour days. I seriously cannot believe I have this.
Here is what is happening now: I have been taking Vicodin ES 325/750 for pain (although I should be taking it every night), supposed to be taking Gabapentin, but it makes me too sleepy during the day, and Oxycodone 5mg for pain days. I can't stay awake during the day, so was just prescribed Provigil 200mg, which doesn't really work. I drink 5hr energy drinks, coffee, take No-Doz, and/or sometimes Adderall (adderrall) XR to just make it through a day because I am so tired. I used to be larger due to the meds and actually feeling the pain, but recently lost 44lbs on weight watchers.
I know people are going to say "take it easy," but I did not go to school for a total of 21 years to give this up. I know how to handle the pain, but new symptoms are emerging.
I am starting to lost feeling in my fingers and toes at times. When I breathe in, the muscles next to my spine hurt like I just exercised them. My mood is changing (which very possibly could be from the stress of being in my last year before being Dr.), but I have lost all sex drives. I do not abuse my pills, I actually count them and make sure I take less than one per day so I have extra if I really need it. The only meds that have actually worked for me are Oxycontin, which actually took away all my pain for the first time in my life. I was prescribed 30 in 2009 (March) for surgery (I had breast reduction), and I still have 5: a) because I'm scared of them and b) because I hate asking drs for meds, and hate people thinking of me as a drug seeker.
Please help me with any of these problems. I would really appreciate it.
Oh yeah, anti-depressants have the reverse effect, and I've pretty much been on every single thing on any website at some point in this hell.
I need to know: what is this finger numbness and arm pain, how can I stay awake without all the crap I take per day, and with all these symptoms, could it possibly be something else? I dont want to have fibro- no answer
I understand what you are going through. We have some things in common. I lost several pounds through Weight Watchers. I also worked full-time while going to school full-time and then later finishing my masters degree with chronic pain. I've been suffering since I was a teen with sciatica, degenerative discs, scoliosis, and other pain conditions.
It's hard to deal with the physical and emotional stress of trying to become a professional while you're dealing with doctors who are trained to believe that some types of pain are somatic. And if you've spent your career studying about people like you, it almost makes you feel like an oxymoron of yourself, or at least that's how I've felt. I've learned though that it gives me a better perspective than others in my position though. Hopefully it will make you a better doctor because you know this stuff is real and not imagined.
From my experience, however, most people with Fibro have other issues going on along with Fibro, such as degenerative discs, nerve dysfunction, or even undiagnosed thyroid or hormonal issues. You probably do too and just don't know it yet. Based on the symptoms you expressed, I would (if you haven't already) ask to have an MRI and EMG of your neck. What type of doctor currently treats your pain?
First of all Congratulations on such an amazing academic accomplishment in the midst of all of this.
BUT and this is a HUGE BUT you are potentially ruining your health. Your adrenals can't take this stress. If you have not done so already with the energy drinks, stress from all the hard work and the mix of medications. I would strongly agree with you about not believing that you have FMS. It's hard to tell what you have with all that is going on in your life and body. Your body is all you've got and you are not caring for it. In order to keep going and prevent a life of medications and/or illness you must reverse what you are doing. If slowing down is not an option and I am sure at your age it is not, I have a 20 year old junior in college who presents with fibromyalgia symptoms, he has been since he was in junior high. He has changed how he eats, he drinks a ton of water, he takes supplements and he has eliminated or limits sugars. It's helps him so much. It has changed his pain, he still has pain but nothing like before and he is not on any pain meds and says he will never go there. He takes an occasional vicodin but it's every few months when the pain is so bad he can't sleep.
Foods, what you drink and how you live is key to how you will be able to function. Vicodin is such a tricky one, it helps temporary and for me gave me rebound headaches, stomach issues and mood changes. Gabapentin is something I take when my nerve pain is very bad but has so many side effects and I only take when I need it.
I too was prescribed Provigil, it's the new speed for fm people. I can only tolerate 1/2 at a time.
If you could reverse how you are eating and what you are drinking I think you would change how you feel.
By doing what you are currently doing you are destroying the adrenal glands. You will eventually shut down as far as energy and fatigue and you do not want to go there.
You didn't mention what you eat. You need to start by having breakfast. I know that can be hard, I'm not often hungry in the morning. There is a great oatmeal, its with flaxseed and omega 3's. Or even Special K and milk, a piece of fruit. If you need your coffee limit it to 1-2 cups. Too much caffeine is making you crash during the day.
Then you start with your water. Drink a minimum of 98 ounces per day. Carry a water bottle every where.
Protein is another source that will give your energy, improve your concentration and thinking. String cheese mid morning, nuts, peanut butter, turkey.
Then lunch, salad, sandwich, small piece of fruit.
Dinner-lean protein fish, lean meat, chicken, and vegetables, salad.
I also get B12 shots monthly. It's amazing how this helps and FM people tend to lack B12.
If you have not had it checked have your B12, thyroid, and Vitamin D levels checked. We all need Vitamin D. I saw a doctor years ago who believe a low dose thyroid medication improved energy and helped pain in FM people. I've taken a low dose thyroid medication since. Most recently I switched to an Iodine supplement. It's really helped me.
With all of this check side effects of any supplements and I am not a doctor I just lived very much like you. I had a great career and I pushed myself and ignored all the signs of dis-ease in my body. I drank coffee round the clock, didn't eat or didn't eat right. I did this for over 12 years. I also denied I had fibromyalgia. Now I don't know if what I did to my body brought on FM or if it was something I already had but it is something I suffer with.
I highly recommend doing some of these things now so that you can use your education and live a full, exciting life. One that is not consumed with pain and medications.
You can changed health issues or at the very least build your body up in other ways with nutrition, exercise and even water.
Exercising 4 or more times per week under the current conditions in my opinion will only add to your pain and not give your the benefits it could if you were doing things to build up your health.
Going from there and then seeing what type of pain medication would be best for you might be a better plan.
All the best to you.
I do eat breakfast, lunch and dinner. I do not eat sweets. I have learned how to eat healthy from Weightwatchers, and have maintained my 44lb weight loss for 2 years now. I eat protein, take vitamins, etc.
I have tried the no sugar, yeast, tomato, dairy, etc diet: all together, just missing one at a time, etc, but it did not help.
I am tested every year for thyroid problems, have been tested for Lymes disease, and the inability to absorb Vitamin B- All normal.
The energy level has not been as bad as it currently is. I used to not need coffee, or anything. As I am getting older, it is getting worse. I have a very high drug tolerance, so I am taking 300mg of Provigil, which wears off at like 10am.
I only take the Vicodin for pain days, or days that I do a lot of driving- which is not every day. It has been my regiment for years, and I think I haven't built up a tolerance because I do take it so little. Basically, on a day-to-day basis, I am on no medication for Fibro- only energy. I drink so much water that my car is constantly full of empty water bottles, my desk is full of them, and my entire lower shelf of my fridge is full too! I buy a case at costco every week and it is gone!!
I appreciate your comments, but I'm already doing/have done all of that. Nothing is helping.
Dusty- a pain doctor treats my pain. I have been to Rheumatologists, GI drs, general drs, ortho drs, etc. The doctor is a family friend who has a wife with horrible FMS and sensory issues, so he understands. Basically I see him every 3 mos for refills.
Ahh I missed the weight watchers part. I too did weight watchers many years ago. It really helped, teaches good habits. If you are anything like I was you try things temporarlily and if they don't work you get frustrated. It's a life long process.
I kept thinking if my pain was just managed better I'd be okay. I like you was not seeking medication but wanted out of pain. So I was given one prescription after another. Trust me each doctor you see will you give you one prescription after another. The provigil is not a good thing and not at that dose. Again I am NOT a doctor but you are harming your body by ingesting things at high doses to keep you body going. And if you do have fibromyalgia and you are over exercising it causes more pain. Moving, exercising is essential but given how your body is telling you it can't keep going the way it is putting more stress on it pushing it at the gym and drinking energy drinks and taking that much provigil is too much. I am so sorry to be pushing this point, I get so sad when I see people in this cycle of pain. It takes so long to get out of it and it can be so difficult.
I really am worried about you only because I've been there. I was in my early 30's when I was doing this to myself. I also lost weight at weight watchers during that time. I rejoined about 2 years ago. When a leader was suggesting some of the recipes she was I left the meeting and never returned. Only because I knew it was foods that would make my FM symptoms worse. I am by no means a nut about foods and I am by no means a great eater. But by trial and error I can tell you doing the right things can help you.
What about B12, have you had that checked? Even though "tests" we get come back "normal" and mine did most recently I asked that I continue to get B12 shots for FM. The doctor agreed with me. B12 shots will give you such a boost of energy. I can't say enough about it.
Tests are subjective and for FM people looking at symptoms rather than tests results is key. You have many of the symptoms of low thyroid. Again I am not a doctor but it's worth looking in to.
You mention you don't do well with anti-depressants. Have you tried Cymbalta? It's for FM pain as well as depression. Of course these all have many side effects. That a long with a low dose thryoid medication or Iodine supplements, B12 shots would really be a great start for you.
Some doctors are prescribing Mirapex, there are many horror stories about it. I personally wouldn't take it, that or Lyrica. But your doctors might mention them both.
Oxycontin may be the next level of narcotics they discuss with you but that might be with a pain management doctor.
You might want to consider reducin how much intensity you put into you exercise regiment..and do only gently exercise ot keep your muscle tone to start with, and if you are able...water arobic is very helpful to FM too.
I know it is disheartening after studying so hard to get a doctor degree...only to find out that you're sicker with time. The prospect of letting it is not an option. But, my friend, PUSH=CRASH is one of the most frustrating reality with those of us with ME/CFS, FMS, because thesse disease are terribly unforgiving...it doesn't discriminate regardless what your goal is in life, ir profession.
Anti depressant, anti-inflammatory, pain meds all tend to make us drowsy, some reduces our sex drive..
To have FMS pain day in and day out is pain, I totaly sympathize....it is so unfair and not fun having alll kidns of pains, real pains, weired pain, you name it ...I have it. I hope I would also stay away from No-Dose, and energy drinks.....try pace yourself and your schedule. If you must....for your own well being, put doctor on hold and take a break, until you recover from this stump.
So, have you had the tests I mentioned run on your neck? You don't have to share if you don't want to. You should probably ask to see a Neurologist for an EMG and a nerve conduction test to test the nerves in your neck. It might help explain the numbness in your fingers. I didn't see that kind of doctor on your list unless you accidentally omitted that.
At some point in time you're going to have to give yourself permission to slow down a bit. I did the same thing to myself. I worked full-time and went to school full- time, while I was sick.
When will you be done with school? I am sure you'll make it- you seem determined. But you're going to have to train yourself to spread your energy out more efficiently if you plan on using your education and working professionally with a chronic illness. It can be done. It just takes time and you have to be more kind and patient with yourself and make sure you don't beat yourself up worse than the world will. That is a skill that is tricky to master.
I haven't seen anyone about the finger thing. I will ask my Dr about it when I see him in Feb. A Neurologist?
I will be done with my internship in August. Then I will be working full time, for actual pay and insurance, so things will be better!
I will also see about those B12 shots.
Internship is a tricky thing- can't slow down, can't give up, or I give up all my schooling. I'd have to leave internship, then if I ever wanted to apply again, I would have to say that I left one before, AND why. Then people really wouldn't take me! Just got to make it to August.
I have tried Cymbalta- made me crazy! My theory is that I am actually not depressed, that I am situationally frustrated, so increasing or decreasing any hormone in my brain is not going to be a fix. I have tried Effexor, Wellbutrin, Cymbalta, and one that starts with a Z. Each and every one made me cry more, lash out at people, and one time threaten to kill myself. When I stopped the meds, I didn't have those feelings! Research shows that this can happen in a very small number of people- having the opposite desired effect of an anti depressant. I guess I'm one of those people!!!
Anyone know of anything besides Gabapentin that helps with sleep, that wont make me drowsy the next day? I am not taking it because it makes me drowsy- even if I take it 10-12 hours before I need to wake up.
Also, I was prescribed Oxycontin for a surgery that I had in March, and it was seriously the ONLY thing that has EVER taken away all of my pain and made me feel normal. That surgery was in April, and I still have 5 left for horrible days. I dont want to ask my Dr for that because I am scared that he will think I'm drug seeking. Plus, at one point, I went into his office when I was 20, and his assistant prescribed me that, and he told me to throw it away because he didn't believe in it... I dont want to go to another dr because then it will look like I'm dr shopping...
I am living in IL for my internship, and commuting to WI on weekends (where I actually live). I am sure being away from my husband, house, and pets during the week doesn't help my pain. Also, the drive absolutely kills me. Just got to get through these 8 mos, and I will be home, with my family, and stop driving so much!! Thats what I'm telling myself, at least...
Trazadone is a very old sleep medication. Side effects are dreams. If you are taking it an hour before bed and getting at least 6-8 hours of sleep you should not be drowsy. Gabapentin has way too many side effects for a sleep aid, purely my opinion. I've taken trazadone for years and it helps.
"Situationally frustrated" is an excellent way to put this. They always want to label us depressed. Being frustrated having pain and not being able to figure this all out is so hard.
You sound like you have a lot of insight in to what works and what does not. You also sound very sensitive to medications. That's a good thing.
Oxycontin works for me. I've got the FM and 7 surgeries on my spine. I would never want to take oxycontin the rest of my life but for now it is working. Keep in mind you will build a tolerance and you can't just stop taking it if you decide you don't want to take it. There will be withdrawals, detox etc.
But living in pain is so hard.
I wish you the best. I am a true believe in B12 shots, the right foods, eliminating sugars, NO crazy drinks that speed your metabolism-you can do that with the right foods, supplements and exercise. Try to think "long-term" and the energy drinks give you a quick hit and then your body crashes, so bad for fm people.
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