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25 years old, new to Fibro and have questions.
9 Replies
jarobinson21 - August 19

I have been diagnosed with fibro for about 3 months but I have been suffering with it for years. I always just thought I was a hypochondriac. I am taking Cymbalta. I was thinking of talking to my doctor about taking Adderoll for more energy and concentration because I am in college and classes start back so I can't sleep 12 hours a day like I normally do. Has anyone tried adderoll for fms? Any tips on talking to my doctor without seeming like a drug seeker, because I would also like to ask her for something for the intense pain I sometimes feel. I am too young to feel so old. Any tips?? Encouragement? I feel kind of alone.

 

Fantod - August 20

Hi jarobinson21- Welcome to our group!

Fibromyalgia(FMS)is a tough diagnosis particularly in someone so young. I am going to give you a crash course on the basics and why your idea about Adderoll would be a mistake.

First of all, FMS is a disorder of the central nervous system. The mechanism that causes it is not understood. There is no cure but it can be managed. FMS is recognised by the National Arthitis Foundation and the Center for Disease Control.

Fibromyalgia has a number of "perks" that come with the package. Not everyone has the same symptoms and they vary in intensity. The most crucial problem is the sleep interruption that FMS causes. Your muscles need deep sleep to repair themselves from the days activities. People with FMS experience short bursts of high intensity brain waves that don't allow them to get the deep sleep the muscles need. No restorative sleep means higher levels of pain. It is very important that you get plenty of rest. I know that as a college student you probably feel immortal. However, if you can not come to terms with pacing yourself, FMS can get very ugly quickly. It can days or weeks to get past over extending yourself. I speak from experience. Taking Adderoll would be a disaster of epic proportion as FMS is a huge stressor on the body.

Right now, you are in the early stages of managing the problem. There is also a grieving process going on as your life has been impacted by a chronic illness. If you can not work your way through this, I'd like to gently suggest that you ask for help. This is a hard health issue to manage effectively. Many people on this board see a counseler for extra help and support.

Cymbalata is a good start for FMS. Only certain classes of prescribed medication will work for FMS. Many people take that along with either Lyrica or Savella. Lyrica is advertised on TV all of the time. The most common problem with it is rapid weight gain. Savella is new to the US market this year. It has been used in Europe for decades. As far as I know, there are no weight gain issues with it. For sleep, Amitriptyline is usually prescribed. It takes time and a lot of tinkering to get the dose and type of medication that is most effective for an individual indentified.

You don't say if your doctor is a rheumotologist. That would be my first choice for FMS treatment along with a pain specialist. You can call your local hospital physician referral service and ask them for a recommendation. Or, you can go to the National Fibromyalgia Association website and register. Then you will be able to see a list of fibro-friendly healthcare professionals in your area.

There are still many doctors (and patient family members)out there who either don't believe in FMS or don't make an effort to educate themselves on the latest therapies. Therefore, you should take some time to read all of the information in the blue boxes on the lefthand side of this page. Knowledge is power. You can not be your own best advocate unless you are well educated on the subject.

Finally, I would like to suggest that you consider some homeopathic remedies for memory and concentration. I use Phosphatidylserine (200 mg) daily which seems to help with the fibro-fog. It comes in higher doses. I buy mine from Puritan's Pride online. They have good sales and this stuff is expensive.

I hope that my comments are helpful to you in some way. If you have further questions, or just need to vent - have at it. You are not alone. Take care and let us know how you are from time to time.

 

Fantod - August 20

Me again - I forgot something else that is important - diet. Deep fried foods, lunchmeat (nitrates) and anything to do with artifical sweetners (including Splenda) are all things that should be avoided. They may raise your pain levels. If you need a sweetner for coffee, try Truvia which is available in the grocery store. You can find it with the rest sugar products. It is made from the Stevia plant and is not toxic. By the way, artifical sweetners just make you more hungry. So sayeth my nutritionist....

 

solanadelfina - August 20

Hi, and welcome aboard. I will be turning twenty-five soon and had symptoms in college, so I understand how that goes.

Most of us take muscle relaxants or some such to help us sleep at night, which is a huge step to feeling better. I take piroxicam, which works pretty nice. College has a great social scene, but getting your sleep is very important. Don't pull all-nighters if you can avoid it.

Are there are any work-out facilities nearby, or do you have room for stretching? Range-of-motion exercises are great to help get me going in the morning and to loosen everything before bedtime. There are physical therapists out there to help you design an exercise regiment to your level. If there's a pool nearby, that'll also help. Just be careful to work at your level. I know exercise can seem like a terrible idea, but it really helps.

Natural remedies can help for getting to sleep. A warm beverage like herbal tea or a hot bath loaded with yummy salts can be a huge help. I also swear by baths to help with pain. Chiropractors and massages can also help with that. Every so often, I'll go to an Aveda institute and get the back treatment to loosen things up. If you're spiritual, meditation or prayer can help clear your mind and serve as stress relief.

Probably the most important thing is to schedule time for rest and not push yourself too hard. I did that in college and paid dearly for it. It can be hard to have trouble doing things, and our lives are very different now, but that doesn't make them any less rich. Have time for fun and friends, and keep up the hobbies that you enjoy. I try to keep up on bellydance and my writing.

Keep us updated, and we'll do our best to help you out. You're not alone, and questions are always welcome.

 

jarobinson21 - August 20

To Fantod: I am not seeing a rheumotologist, I do not have insurance so I don't get to go see the doctor much because it is all out of pocket. The Cymbalta (60mg) seems to help to emotional issues I have but has not really helped the pain. It hasn't caused any weight gain. I have actually lost about 20 pounds since I started taking it. I am almost at my goal weight! Yay!
To Solan: I do get in some workout time at the school gym, I try to do yoga and walk.
Thanks for replying, I can use all the support I can get and we are the only ones who understand what we are going through.

 

Fantod - August 20

Ask your doctor for samples. Most prescription drug companies have assistance for people without insurance. Go to the website of the drug manufacturer and look for an assistance program. Most of them will give you a significant discount on drugs once you get the forms filled out and processed.

You could also call the United Way Agency in your area amd ask them if they know of any free clinics. If they don't, the local hospital might. Someone should be able to steer you in the right direction.

It really is very important for you to get proper treatment for FMS. The longer a chronic pain cycle goes on, the harder it becomes to manage and/or stop. I know that this difficult for you financially and I sympathize. You'll need to think outside the box to find a solution. Take care.

 

jarobinson21 - August 22

So I went to see my Primary Care Doctor today and told her about the pain and fibro fog and she prescribed Tramadol 50mg and Adderall 5mg 2x, so hopefully that will help. Unfortunately the Adderall XR 10mg that she has initially prescribe cost more than $100 for the generic. I have no insurance so everything is out of pocket. I also made a chiropractic appointment for next week so we will see how that goes. School starts back in a week so maybe I will be feeling better by then. I did have the energy today to get up and put away the 5 loads of clean laundry.

 

tnichel - August 23

jarobinson21, I'm no doc but maybe she can prescribe something similar to the adderall that you can get in generic form. The tramadol does not have a generic and it's expensive but works. I use it but I pay $50/month with insurance. I'm also on elavil (generic) and (cymbalta). The elavil with insurance is $12/month....Cymbalta $50. Try to save money where you can so you can pay the steep prices for the really good stuff. I'm willing to pay for the tramadol b/c it really helps but my limit for paying that much is 2 pills. I'm sorry you don't have insurance and have to pay out of pocket. You may want to look into the nulegacy insurance card. Google it. It's free and offers weekly discounts on hundreds of prescriptions. It may not include any you're taking but it's worth a shot.

Also it took me almost a year before i really started seeing a change so be patient. I didn't believe it but Fantod was right. I was a nervous wreck when i got diagnosed and first came to this site. A lot of the meds have to build up in your system to work. I take a muscle relaxer during the day which helps with the the buildup of fatigue so it isn't so bad at the end of the day. That may help with energy. Mutli-vitamins, magnesium, and cutting the sugar and caffeine helps too. Hang in there... it will get better. And we'll be here to answer all of your questions if we have answers. Oh, almost forgot. keep a journal of what you eat, how you feel, and if you exercised until you go back to the doc. I found my doctors responded better to that than me just rambling off my symptoms since my last visit.

You're not alone! I would have given anything to have knowm I had this in college. Instead I suffered silently and went into a really bad depression. My personality completely changed, I was miserable. Hopefully you will get the right medical attention and will be able to enjoy the remainder of your college years. I suggest scheduling your classes so you have time to take a nap during the day. Even a short 15 minute one can do wonders. Look for a support group or at least one friend or person going thru a similar situation whom you can talk to, maybe have lunch with from time to time to blow off steam. Ok, I'm shutting up now! ;)

 

sas73 - August 23

i can relate to you when you say that u feel alone.i'm 36 and was diagnoed last year, but noone has actually gone into detail with what i'm actual suffering with. my pain can reduce me to tears, although am on strong pain killers, it doesn't always kill the pain. i'm affriad of going to my docter for fear of him thinking i'm wasting his time. i also suffer with mental health issues, yet as i slowly learn for myself symptoms of this reched illness, depression, sleepless nights, anxiety, restlessness in the legs i have suffered with for years, i wonder if it was fibromyalgia all along. i have no answer, but can strongly empathise with. i fight it 'cos i don't want it to beat me but am scared as i'm not sure as it progesses how bad it will get. i'm just getting a life after stuggling with mental ill health, but fear it is going to be short lived.

 

al-e - August 26

I feel like I can really identify with you. I was recently diagnosed with FMS, and as a 22 year old trying to manage a full time job along with going to university in the evening. I have another issue among itself is that being Canadian, so a lot of the pain medications mentioned in this website either aren't available in Canada or my doctor's haven't thought to prescribe them to me. Instead, I have been put on a narcotic painkiller that I'm so afraid to use because I don't want to develop a dependency on it. I have been able to see a rheumatologist and he has recommended a few things, including regular excercise, a set schedule for sleep, no napping during the day, and eliminating caffeine from my diet. I feel alone, I feel depressed because I'm not able to work, and being such an independent person this has been so incredibly difficult for me. I would just love to hear some success stories and what has worked for people besides medication. Thanks for your stories and words of encouragement, it's so appreciated!

 

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