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Posted 9/27/2014 10:19 PM (GMT 0)
Hi Everyone,

My name is Lisa and I am 47 years old and just diagnosed with Fibro last week. I read the articles in the 101 thread and under symptoms, kept saying “oh my god, that is me”! Part of me feels vindicated that it isn’t all in my head or aging like my doctor was telling me and part of me is scared that now that I have a diagnosis, any aliments I may have, won’t be taken seriously and just get told, it is part of Fibro which could be but I don’t like feeling like I am getting blown off.

I was tested for lupus but didn’t have enough antibodies in my blood or the butterfly rash to conclusively diagnosis me with that so instead it was Fibro. My general doctor loves throwing another pill on my list (I already take elavil, xanax, Celexa and a blood pressure med) and disagrees with what the Rheumy said to take and put me on Lyrica. I only lasted 3 days on that because I couldn’t drive and not walk into walls. It made me feel so high and not in a good way. It also made my throat tingle and my skin itch. I know it is going to p*** off my regular doctor to no end that I will not take it and only gave it 3 days. Which doctor should I listen too? So annoying they both can’t get on board and work together to help me.

I guess my question is how do you all cope? I suffered for about 3 months (after reading the symptoms it was probably years to be honest) before going to the doctor with bone pain, night sweats, bruising all over and I just can’t imagine this is going to be my new normal. I work 40+ hours a week and go to school and am so exhausted and in pain by the time I get home, I just want to sleep. I now have to nap during the weekend (NEVER used to nap) and actually just woke up from a FIVE hour one a few minutes ago and totally could go back to sleep already.

Props to those that have suffered with this for years, I honestly don’t know how you do it.

Lisa
Posted 9/27/2014 10:44 PM (GMT 0)
As a person with both lupus and fibro you don't need positive bloodwork to have lupus.
Check out the 11indicators at lupus.org. you need only 4 of the 11 to be diagnosed. Some of the old school doctors don't follow the new rules of diagnosis.
Find a new rheumatologist asap.
Posted 9/27/2014 11:24 PM (GMT 0)
Welcome, new person!

Well, both doctors might be right. Or both wrong. Or one right and one wrong... you get the idea.

Ultimately, you have to try different things and see what works best for you. So, Lyrica gives you big side effects. Three days is not much of a trial, since your body needs time to adjust to having the medication on board, and most side effects will lessen or go away after a week to ten days.

I know this is not very reassuring.

There are things most people do which can help keep your body 'happy', and will help the pain and fatigue. Eat properly. Exercise/move regularly. Sleep properly. Avoid stress/anxiety as much as you can. Supplements can help to keep your body working properly. I believe that there is a section in "Fibro 101" dealing with those. They help some immensely, others not so much, or at all.

So, again, welcome. It's a tough road to figuring out what works, but you will find it.
Posted 9/28/2014 12:42 AM (GMT 0)
Welcome. Yes it would be nice if the drs could agree. Do you mind me asking what the rheumy suggested?

No matter what they suggest, you still have to trial and error it to see what works best for your body.

Lj
Posted 9/28/2014 3:04 AM (GMT 0)
id67ny, hello!,
So sorry we had to meet you under these circumstances but are glad you found us. My Opinion, a board certified rheumatologist deals with this condition on a daily basis, in fact to them it is like a common cold is to a GP. , meaning they see it a lot. This is not to say you can't find a GP whom is not good at treating this because they are out there. In fact I personally quit seeing my GP and went with his nurse practitioner, to me she is more compassionate and willing to try whatever I suggest. You need someone whom will listen to your needs and not just throw pills at you that you are not comfortable taking.

I do agree with MYSELF09 on giving meds a fair chance to work out in your system, but again only you can decide this. If the Lyrica was terrible for you then it is what it is and you try something else.
You have a lot going on with school and work. I can not imagine a healthy person not being exhausted by doing what you are doing. I myself work 50hrs a week as a store manager. I could not imagine class work on top of that. Mad props to you.

Most likely to get a grasp on fibro you will need a multi disciplinary approach which could be a prescription med, supplements, gentle exercise, meditation, massage etc. etc. a combination approach will help you most.

Please keep posting and let us know how you're doing. our members really do care about each
other.

Take care
Michael
Posted 9/28/2014 11:47 AM (GMT 0)
Hi, I'd, and welcome! I would find a new primary care doctor...preferably a board certified Internist...because they have more education. Make sure they do treat or at least understand fibro to some degree. You can ask if they treat fibro patients. You need a doctor that knows about this illness and also knows that not everything is caused by fibromyalgia. When I developed heart palpitations, my Internist ran me through many tests just to make sure it wasn't my heart causing the problem even though he highly suspected it was fibro. There are good doctors out there.

I also have a board certified rheumatologist that helps me with fibro. If I had to choose which doctor to believe when it came to fibro, I would choose my rheumatologist since, as Michael mentioned, they see this illness a lot. They also see lupus, rheumatoid arthritis, and a host of other illnesses that have many of the same symptoms as fibro. But I would definitely leave your general doctor.

I wouldn't continue to take a medication that had me walking into walls either. Sometimes we have to draw a line and we do know our bodies better than anyone else, too. I was given a new medication for diabetes this spring and it gave me severe diarrhea...to the point it was dangerous for me because I also have Crohn's disease. I stopped that medication in one day. Your body was telling you something! Now, if you try a medication and the side effects are just an irritation, then it is good to give it a week or two so your body has a chance to adjust to it.

I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a muscle relaxer called Robaxin that made a significant difference in my pain. (My rheumy gave me that one.) I also walk daily as a gentle form of exercise and I pace myself when doing things. All of the above help keep my pain and fatigue under control.

Unfortunately what works for one, medication-wise, doesn't necessarily work for another. It's a trial and error type of thing. But once you find what helps you be in control of the pain, you can have a full and enjoyable life in spite of this illness. I have had fibro for 27 years and have had a great life so far.

Be sure to read all do Fibro 101. There is a lot of good info in there and you will learn a lot.

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.

Sherrine
Posted 9/28/2014 3:37 PM (GMT 0)
Hi Lisa,

I'm sorry you are going through this, but you aren't alone. You should listen to your gut and your body (regardless of doctors), you know your body best. They just know the drugs (and mostly only know those because some drug rep came and sold them a bill of goods). Like you I didn't last 3 days on Lyrica; I had the same symptoms you described. After that I went on gabapentin (which is the older cousin of Lyrica) and I do well on it. It helps the nerve pain greatly. I also take a muscle relaxer at bedtime. What I found that helps me the most was diet change. I stick to pretty much whole (non-processed) foods now and avoid gluten, dairy, and eggs. I had a major decrease in flares once I gave up gluten, and the others cause issues with IBS for me.

Don't be afraid to try things, but trust your gut.
Posted 9/28/2014 4:24 PM (GMT 0)
Hi and welcome. I take 60mg of Cymbalta 2x a day. It has been recognized by the FDA for pain relief as well as treating Fibromyalgia. It's also an antidepressant. I am on several meds also.

Another med that helps with nerve pain is Neurotin (Gabapentin). Alot of people don't like the side effects though. I worked through them and really get some relief from it. Your doctor may start you on a low dose to begin with and work you up to a higher dose. I'm on 600mg 4x daily.

As Fibro 101 suggested, I started taking Magnesium Malate and vitamin D3. I had my vitamin D checked Friday and it came back low. I would suggest to you to have your doctor do blood work and check your levels. It seems like alot of us are deficient in it. There is a recent thread on this you can read. I also got my vitamins from Puritans Pride. I bought one bottle of vit D and got 2 free! And when UPS delivered it to the wrong address, they immediately sent another order to me free of charge. Pretty good customer service.

I started taking extra virgin coconut oil daily- a couple tsp a day. I get a 16oz jar from Kroger for around $10. I don't mind eatting the oil right out of the jar but if you can't handle that, they make capsules as well. Theirs a ton of info on coconut oil online as well as books galore. It's really has helped me with my low energy levels. It's a medium chain fatty acid. That means it doesn't get stored as fat but your body burns it off! I've lost a few pounds myself!

Once you find a good doctor, take things slow and try to go with the flow. Fibromyalgia sucks! I know I can go crazy if I dwell on it. There are times when I still feel crazy-like it's all in my head. And I never know if a new symptom is Fibro related or something new.

That's when you can come here and bounce things back and forth with us. You will find people you relate to and hopefully feel some support. You can also vent to us. We've all been there and we listen to you. We may not have answers for you but we will listen to you! (I am repeating myself now. Lol! Sorry.)

Keep in touch and let us know what's going on with you.

Dawn
Posted 9/28/2014 7:10 PM (GMT 0)
Welcome to the forum! There has been so many good suggestions already said. I would say order some book on fibro on line. I truly believe education helps reduce some fears and anxiety about fibro. Many books go over all the symptoms and reasons why fibro does what it does. I could see myself on each page. It reduce my Dr. Bills because I Knew my symptoms were fibro. There was no need to run to the Dr. with these crazy fibro symptoms all the time.

This forum really helped turned my life around. I feel very supported and have learn a wealth of information. It taught me how to managed my fibro better. You will probably learn more here then what your Dr. shares with you. If your wanting that I would visit the forum frequently ask questions. I know your a busy lady, but it will give you great support. You won't feel like your alone in this.

When your try new meds, it does take awhile to see what might work for you. Sometimes the drousy effect to meds will go down after been on them a few weeks. If you really feel that it's not going work then you know your body. Trying new things is like a trial and error method with fibro. I took months to perfect a treatment plan for me. We are all so different and have numerious health issues too.

Your kind of in a difficult time in life because of full time work and school. Fatigue and pain are usually on top of people's list. I just would be careful not to over extend yourself too much. I learned how to say no I can't do extra things. It was hard as a lady like to do those things. Stress is our worse enemy. So if you can reduce it in any way it might help. Exercise is so great for fibro plus reduces stress.

I hope we will see you around more often. I wish you could see the difference in me when I first started. I was at the bottom of the barrel. I now have good days with my fibro such as good pain control. I just need to learn how to managed my anxiety better. It's an everday chore keeping up with fibro, but manageable.

Post Edited (ak angel) : 9/28/2014 1:16:22 PM (GMT-6)

Posted 10/2/2014 4:01 PM (GMT 0)
Lisa,
Welcome to the forum. So much great info and you'll find the people will be a blessing.
I also couldn't take Lyrica and told my Dr.s straight up that I wouldn't take ANYTHING that makes me feel "stoned/drunk" where I don't know or can't say my name. I take Cymbalta with some other meds and so far, it's worked well for me.
If you like your Dr.s, ask them why they can't work together. This always puzzles me when I've found so many that will or have for me.
Day by Day is the best way to live with this.
Look forward to hearing more on your new - yet unchosen path.
Brenda
Posted 10/7/2014 10:38 PM (GMT 0)
Hi! I'm new here on these threads as well :) I have come to find out that the way of finding your personal "mix" of medications takes dedication. I have been lucky enough to be on disability right now so I can find my own, and I'm pretty close to finding what's right for me.

I'm currently on gabapentin, nortriptyline, cymbalta, and other meds for other health issues. I wish I could have taken lyrica, but my insurance won't approve, so I have to try other medications until they decide I can have it. So cymbalta has given me the worst side effects, but it's very true that you just have to push through until your body gets leveled out. I wish you all the best of luck on your journey to finding some kind of pain management! :)
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