acoustic neuroma and fibromyalgia

[Nancy Drew]

Hi Patty,

Sorry to hear that your have fibro and that your husband has bipolar.  I am glad the meds work for your hubby.  My hubby probably wouldn't be with me either without my meds....I take Lamictal.  I was taking vicotin for migraines because they had quit making the migraine meds I was taking and the others didn't work.  I noticed that I was taking vicotin more and more at night for pain in my body, and that started to concern me.  My doc told me it wasn't a good idea to take the vicotin every night so that is why she put me on the Lyrica.  This fibro diagnosis really baffles me.  I sometimes wonder if my bipolar issues might compete with the fibro issues.  I guess I really should get to a specialist to get to the root of my problem so I don't second guess myself all of the time.  Living in denial is not so great sometimes.  I hope you will have a better day tomorrow, Patty.

Nancy

[Nancy Drew]

P.S. Patty,

I also meant to say sorry that you are having to deal with an AN on top of the fibro.  I hope things go well at Mayo. 

Nancy

[kwalker]

 :)hello, i'm new to this site. I heard somewhere else about te coorelation between brain tumor and fibromyalgia. I was by dr. for fibromyalgia over 20 years ago, my case is not severe thankfully but it is painful. In my case if you put pressure on the painful point and use massage and ice/heat it as helped plus over the counter meds. i had a neuroma removed november of 07 and had an infection and more surgery dec. 07.

[Nancy Drew]

Hi guys!

I saw the rheumatologist last week, and I finally got my diagnosis.  She is pretty sure I have a mild case of fibromyalgia.  She checked the "trender points", but she didn't tell me how many or if I had any.  To be honest, the places she touched didn't hurt really bad....only a couple were slightly sensitive.  She took x-rays of my feet and knees, and she said the joints looked pretty good.  She said there is some slight arthritis and spurs in my left foot (I had broken this ankle in the past) and slight arthritis in my right knee (which I had hit on a huge rock when tubing down a river a couple of years ago).  She said I wasn't ready for a walker yet!!! HA,HA

In the meantime the doctor gave me a medication called Mobic which she said is stronger than OTC pain relievers.  I find that this medication really doesn't give me any relief.....might as well take a sugar pill.  She wants to try me on Cymbalta, but she wouldn't prescribe it until I see my bipolar doctor to make sure the medications I take don't interact with this SSRI.  I am a bit worried because usually people with bipolar don't take SSRIs (antidepressants) because they can drive one into a manic phase.  But, at this point I am willing to give anything a try.

This all kind of sucks, but I guess it could be worse.  I would have to say that the fatigue is by far the most difficult to live with.  I am always so full of energy so this is weird for me.  Hopefully relief is on the way.  I guess as with our ANs, acceptance is what comes first.  I'm getting there although many cuss words have become a part of my vocabulary (not in public, though!)!  I'll keep you guys updated.  Thanks so much for your support.

Nancy

[sgerrard]

This all kind of sucks, but I guess it could be worse.

Another good candidate for forum motto. 

Best wishes with this, Nancy. I hope you find a path that lets you feel like you have some energy, at least, and that you can do some of the things you want to do. I don't know if there is any magic cure for fatigue, except adjusting to it and working around it so it doesn't seem so disruptive. The Cybmalta sounds like it might be kind of complicated.

Take care and hang in there.

Steve

[cindyj]

Hey, Nancy!  Yes, you're right, you know, it certainly could be worse.  But, it's still tough to have to deal with what you have to deal with already, and now this on top of it.  Do try to get out and take some of the walks around your beautiful Colorado...even little ones - might actually help your fatigue and know it would help reduce your stress.  Try to stay positive!  And do stay in touch!

Cindy

PS - Did you ever try to contact my sister?  I know she'd be happy to talk w/ you.

[JudyT]

Dear Nancy....I am so sorry for you as I face the same battle. I received an e-mail from my PC doctor yesterday that he had e-mailed 3 other doctors.....counselor,pain clinic doctors to get their opinion whether he should renew pain med (hydrocodone) and Valium. I am livid....first he doesn't really know about AN's....neither do the other 2 at Chronic Pain clinic...pychologist does from me (she's very good). I suffer from headaches,balance issues that cause pain in my body from stress on joints/muscles/trigeminal pain/facial numbness/fatigue......etc. 1/4th of 5mg Valium helps calm the vestibular nerve and relieves the tinnitus somewhat as it is loud and 24/7. Why these doctors don't "get it" is beyond me. I have NEVER abused my medication but find it extremely helpful in managing my issues. I cannot get to the pain clinic 3 mornings a week for 3 hour sessions each time. When I went to the clinic orientation I was the only one with an AN and I could tell the doctor hadn't a clue what that was.....others there were chronic back pain sufferers. Balance issues cause me to be house bound some of the time because I can't drive....am a widow and don't have anyone to get me there 3 times a week as I live in the country, from 9-12 each visit. I am trying to go to the gym for water therapy when I can.

[deblyvers]

Hey Nancy,
I had my AN surgery 20 yrs ago. I was diagnosed with fibro 3 yrs ago. I know what you are going through. I have taken all the meds you mentioned. I am now back on mobic but like you said it doesn't all ways work. I have a lot of brain fog.....I get to where I can't even think or remember stuff. It is so frustrating. My fatigue doesn't come as often as it did. I learned when I have to rest and not to exercise or lift my grandchildren. It took me awhile to realize what I could and could not do. When I have a low grade fever and hurt all over like having the flu I get in a tub of hot water. It really seems to help. I posted in Jan. asking if anyone had fibro and I did not find anyone so didn't know if there was a conection to the two. All the research I have done some will mention it could be from a head trama. Well that makes sense to me The doctors still doesn't put it together. I get so frustrated with all the doctors. Several months ago one of my doctors said I also have Lupus. I really wonder about these doctors. I can not work, I have filed for disability and have been denied 2 times. My next step is to go before the disability judge. It has been a night mare for me. It has caused great depression. Any way hope your meds are working better and I wish you lots of luck.

Many Blessings to you
deblyvers

[MAlegant]

Nancy Drew,
I've been on Lyrica for about 2 weeks (for surgery related nerve pain) and I am doing really well.  The fog has lifted and lots of the pain has gone with it!  I really think this is  a drug that needs to build up in your system.  it also has not caused me to gain weight thus far.   I was on Cymbalta for a while and it was not a good med for me.  Made me depressed and didn't help the pain.

I hope you continue to find relief.
Best,
Marci

[Nancy Drew]

Thanks everyone for your comments.  Seems like we all have our own little journeys that seem to side track us sometimes.  The doctor's report said I have 12 out of 18 tender points.  I think I know where some of those points are, but I will probably call to find out the exact ones so I will know what to be looking for.  My bipolar doctor said I am not a good candidate to take any of the meds that the rheumatologist suggested because of interaction issues.  He said having bipolar and fibromyalgia together is sort of difficult to treat.  He suggested I take a smaller dose of Lyrica (25 mg at night) and build up from there if needed.  So far this dose hasn't given me too many problems (the foggy feeling as you mentioned, Marci), and I will probably increase to a 25 mg pill in the morning in a couple of days.  I guess it is just trial and error.  I am having a difficult time accepting the diagnosis hoping that I will wake up one day soon and life will be back to "my normal".  I am so use to having a lot of energy and learning to pace myself is very difficult.  I can definitely see how I pay for it when I have done too much.  Mostly hits me at night, and I have a difficult time getting to sleep because of the pain which is mostly in my legs.

The hot baths help, but I mainly stick to short hot showers because of water restrictions in our area.  I try to keep up with exercise, but I think I should get back to the gym to do the ellipitical machine or stationary bike (doctor suggested).  I am sure there are tricks to be learned along the way with dealing with fibromyalgia just as we have had to learn to deal with out ANs.

My heart goes out to all of you who are going through physical pain and who are trying desperately to get some relief.  I only have mild pain from time to time which I can deal with.  If I could just get through the fatigue and sleep issues.  Thanks for your suggestions and support.

Nancy