Author Topic: acoustic neuroma and fibromyalgia  (Read 2178 times)

Nancy Drew

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acoustic neuroma and fibromyalgia
« on: April 08, 2009, 01:43:17 pm »
I had Gk on Oct. 21, 2008.  See my signature below for more info.  So far so good with the results of the GK, and I am thankful.  However, I haven't felt well since about the end of November.  I had a viral infection (so my PCP thinks) the whole month of Dec., and then starting in Jan. I began having sinus infections that did not respond to antibiotics.  Finally made it to the ENT (who, by the way discovered my AN), and he decided to do sinus surgery (which I have had in the past).  He took a biopsy, irrigated the sinuses and stretched the windows I had put in over ten years ago.  The biopsy identified the type of infection, and I went on another round of antibiotics, and the sinus infection went away and the surgery was considered successful.  Well, to make a long story short, I just haven't felt well since Nov.  Symptoms have been achiness in my joints, sleep problems, headaches, fatigue, depression and just feeling like I might have the flu.  I saw my PCP today, and she thought maybe I am having some symptoms indicative of fibromyalgia.  She prescribed a medication called Lyrica to see if that will help.  If not, she will send me to a specialist.  She said stress can be a contributing factor with fibromyalgia which I have definitely had in the past year.  AN growing, doctors telling me this and that about my AN, making a decision about treatment, having the treatment itself, son in Iraq and maybe going to Afghanistan, having bipolar disorder, OCD......

I am blown away with having another label put on me.  My doctor said just as you can learn to live with bipolar disorder, an acoustic neuroma, stress, etc.....you can also learn to live with fibromyalgia.  I am pretty worn out with the thought of having something else to contend with, but I am a pretty strong person.  Just needed to share this, and I am also wondering if anyone else is dealing with fibromyalgia and how you have learned to deal with it.  Thanks for listening.....I just got back from the doctor's office so you guys are the first I have shared this news with. 

Nancy   
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Jim Scott

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Re: acoustic neuroma and fibromyalgia
« Reply #1 on: April 08, 2009, 01:58:52 pm »
Nancy ~

I'm sorry to learn of this new development that could present another physical obstacle for you to surmount.  I wouldn't worry about labels.  My wife has lived with fibromyalgia for almost 20 years.  Medications help and the rest is just plain determination.  She also has Crohn's disease and spinal problems (many surgeries) but you wouldn't know it to look at her.  She refuses to allow these issues to control her life - and she succeeds, although it's not always easy.  She's an inspiration to me.   I know my fellow moderator, Phyl, has dealt with fibrommyalgia as well as her AN treatment and has other ongoing health issues. She'll probably respond to your post/question and may want to communicate with you on a PM basis.   I can only offer you my sympathy - and prayer.  I hope it helps.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Nancy Drew

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Re: acoustic neuroma and fibromyalgia
« Reply #2 on: April 08, 2009, 04:15:16 pm »
Jim,

Thanks for your kind words and for sharing about your wife's struggles.  She sounds like a trooper, and it is encouraging to hear that she has been able to manage her fibromyalgia and other issues so well over the years.  I know I am a fighter, and I won't let this get me down if I can help it.  I remember snowshoeing a couple of weeks ago and thinking I had lead in my feet.  I'm going to go again this weekend and just keep plodding along.  I'll just be at the back of the pack!!!  I have been hesistant to do internet research at this point.  I know how draining that was with the AN stuff, and I am just not up for it right now.

Thanks again for your support and prayers.  You are just a really nice guy to have around on this board.

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

ppearl214

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Re: acoustic neuroma and fibromyalgia
« Reply #3 on: April 09, 2009, 12:37:49 pm »
Nancy,

Oy.... but, here to help! :)

As Jim noted, his wife and I also have FMS as do others here on the site (there have been other threads here about it... go to the forum home page and do a "search" on the top left for Fibromyalgia... you will see the discussions.)

My FMS was diagnosed much before my AN/Chiari diagnosis.  FMS is usually a secondary condition to other conditions (as was in my case as well).  FMS is usually muscle.... not joint (some people do confuse RA/Rhuematoid Arthritis with FMS... FMS is muscle, RA is bone/joints).  Testing done with trigger points. Out of 18 trigger points, I failed 17, thus... my big, whopping FMS diagnosis. Dr's have tried me on different meds, including Lyrica. I have issues with meds and, for me, the Lyrica didn't work but I know of many that it has helped.  there are days the pain is brutal... there are days I do just fine. Stress does enhance my pain levels (oh, the stress of being a Moderator here.... yep, there goes my FMS just thinking about it! :D ).... the key is making sure you rest properly, exercise and eat a well-balanced diet.  Jim's wife (a VERY lovely lady) and I have spoken to each other about it and how we try to cope with it daily.  My coping mechinism? I am greatful to be on this earth every day :)  that is what helps me.

In my case, there is no correlation between my AN and my FMS.... My AN has had no bearing on my FMS, unless I stress out too much about my AN (in my case, that was a done deal when I was told my AN was a "done deal", thus, I no longer stress over my AN).

Pls hang in there. If you want to PM me here, please do... my inbox is always open.

Phyl :)
1cm x 7mm x 4mm, left IAC AN, w/Chiari I Malform., Cyberknife - Beth Israel/Boston, April, 2006
May 10: Per Dr's, "it's a "Done Deal", Hearing same as pre-treatment

"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Brendalu

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Re: acoustic neuroma and fibromyalgia
« Reply #4 on: April 09, 2009, 02:12:13 pm »
Nancy,

I agree with Phyl.  Stress is huge.  I take Cymbalta for the pain and it helps with depression too.  I was lucky.....I only had fifteen trigger points, but a very excellent doctor who stays on top of any new treatments offered.  I opted out for the Lyrica because of the weight gain side affect.  Life is way too precious to give in to the pain and not enjoy the grass growing, the birds singing and the babies crying or smiling...............
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

Nancy Drew

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Re: acoustic neuroma and fibromyalgia
« Reply #5 on: April 09, 2009, 03:55:49 pm »
Thanks Phil and Brenda for the helpful information.  I am glad to hear that Fibromyalgia in not related to my AN.  And, I assume it has nothing to do with the radiation from GK.  I haven't had a full work-up for Fibromyalgia so I am not sure about trigger points.  The doctor gave me Lyrica, and I took my first dose last night.  I will admit that I had an great nightsds sleep which I welcomed since I haven't been sleeping very well for months.  But, when I got out of bed I felt really dizzy and sort of foggy headed.  I was concerned.  I took a walk to see if it would make me feel better, and I didn't do very well with walking the line on the concrete sidewalk.  But, when I got back I did my Wii Fit balance exercises, and I did ok.  Then I felt a burst of energy and started cleaning my house like crazy.  Now I am taking a rest because I am beat.  I guess I will just take it day by day and see what happens.  I don't want to go looking for something that might not be there.

Brenda,  I think I have taken Cymbalta in the past for pain in my ankles (long time ago).  Wasn't that medication taken off the market for a while and then given the OK for people to take.  I think it helped when I took it so I might ask my doc about it.  I sure don't want to deal with the weight issues since I have successfully overcome an eating disorder by losing 50 pounds.  I don't want to have to go through that issue again.

Again, thanks for the info and the support.  I plan on enjoying life for a long time despite the obstacles that might be thrown my way.

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

ppearl214

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Re: acoustic neuroma and fibromyalgia
« Reply #6 on: April 10, 2009, 08:01:35 am »
Nancy,

A Rhuemetologist does the testing/diagnosing of FMS... so, to help rule out (hopefully!) that you have FMS, you may want to contemplate an appt with one.. .they also do the testing (blood work) and such for RA.....  the Lyrica doesn't begin to work overnight and yes, the first week or so, your body needs to get adjusted to the meds, so just take it easy for a few days until your body adjusts. What dosage did they give you?

As for a correllation to AN's.... I am not aware of any medical/scientific proof of a relationship, other than stress from having an AN can aggrevate FMS/CFS, etc....  I know you have a great deal going on with you, so it could be a number of things that helped these symptoms crop up. 

Please let us know if you do meet with a rhuemetologist for follow up.

Hang in there.
Phyl
1cm x 7mm x 4mm, left IAC AN, w/Chiari I Malform., Cyberknife - Beth Israel/Boston, April, 2006
May 10: Per Dr's, "it's a "Done Deal", Hearing same as pre-treatment

"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

sgerrard

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Re: acoustic neuroma and fibromyalgia
« Reply #7 on: April 10, 2009, 08:37:23 am »
Hi Nancy,

Well it is nice to hear from you, anyway. I don't know anything about fibromyalgia, but my impression is that you can have it a little or a lot, so I'm hoping you only have it a little. I hope you can work out a medication that helps. At least the AN news remains good. 

I hope you are successful in your plan to enjoy life for a long time no matter what crops up. :)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

cindyj

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Re: acoustic neuroma and fibromyalgia
« Reply #8 on: April 10, 2009, 11:30:14 am »
Really just peeking in to say hi, Nancy!  You have had such a stressful year - we know that can cause all sorts of things to go haywire.  I hope the meds will help and/or you can get some relief soon.  Hopefully, it's not fibromyalgia, but if so, as Phyl said, there are certainly ways to lessen the effects.

Keep in touch, ok!

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Nancy Drew

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Re: acoustic neuroma and fibromyalgia
« Reply #9 on: April 12, 2009, 06:03:12 pm »
Hi,

Thanks for all of the replies.  They were really helpful.  The doctor prescribed Lyrica 75 mg...one in the morning and one at night.  The one a bedtime helps me sleep better than Ambien, and I feel more rested in the morning on it vs. Ambien.  The morning pill was really starting to scare me since it made me feel like I was in a haze, and some of my friends told me to quit taking it.  None of them are doctors and none have fibromyalgia, but they saw me in my haze, and it concerned them.  Today was my first day off the morning pill, and I will have to admit that I felt better than I have in a long time.  I was on my Wii Fit for almost two hours straight....doing the two mile run, yoga, aerobic and balance exercises.  I haven't had this much energy in a long time.  But, I think I really should contact my doctor to see what she has to say, and Steve you said exactly what my doctor said, "You can have a little or a lot."  She wanted me to check back with her in a couple of weeks anyway to see how I was doing, and then making the decision to see a specialist to get a work-up.

I am so hoping that I have just been tired from all of the stress and illnesses I have had before and after my GK.  I know I am running on denial right now, but I will just have to wait this out and see what happens.  I am trying to look on the bright side of life and take it day by day.  Thanks so much for the info and the support.  And, "Hi Cindy"!

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Nancy Drew

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Re: acoustic neuroma and fibromyalgia
« Reply #10 on: April 15, 2009, 12:11:36 pm »
Hi!

I started back on the Lyrica yesterday since reading that your body needs some time to adjust to medications.  I should already know this since the same was true of my bipolar medication.  I am curious to hear from those who took Lryica and why it wasn't the medication for them....I think you said that Phyl.  When I am on the medication (night dose and morning dose), I feel like I have lead in my shoes.  I am exhausted, and I am not sure if it is from the meds or the fibromyalgia symptoms the doctor said I was having.  Since I have a tendency to worry about everything, I am going to have my PCP refer me to the specialist she mentioned so I can get a definite diagnosis.  My joints aren't hurting any more and my headaches seem to be at bay now.  All I feel right now is just exhaustion.  I am not convinced at this point that I have fibromyalgia.  Is depression a symptom?  I am just confused at this point, and I guess I need a professional opinion.  What led you guys to the doctor in the first place?

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Jim Scott

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Re: acoustic neuroma and fibromyalgia
« Reply #11 on: April 15, 2009, 04:10:16 pm »
Nancy ~

As I stated in an earlier post, my wife, the lovely and gracious Tina, has struggled with fibromyalgia for over 20 years.  Not fun.  Her rheumatologist prescribed Lyrica for her (replacing Neurontin) but she found it to be ineffective.  Her pain actually increased - so she went back to the Neurontin, which is effective - for her.  Obviously, every fibromyalgia patient, just like every AN patient, is unique.  Fibromyalgia is a clinical diagnosis and can be mistaken for other conditions.  It took my wife some years to obtain a correct diagnosis.  I hope you'll have a better experience as you deal with your symptoms. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Nancy Drew

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Re: acoustic neuroma and fibromyalgia
« Reply #12 on: April 17, 2009, 07:53:40 pm »
Thanks Jim for sharing.  I once took Neurontin for my bipolar disorder, and it felt like I was having electrical activity going on in my head.  Today was the first day I have felt good on the Lyrica.  I had tons of energy which was nice.  Just going to take it one day at a time and see what happens.  Nancy :)
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

sgerrard

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Re: acoustic neuroma and fibromyalgia
« Reply #13 on: April 17, 2009, 08:03:33 pm »
Hi Nancy,

Maybe you are getting tuned in to the Lyrica, and it will work for you. Sounds promising!

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

alwaysthere

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Re: acoustic neuroma and fibromyalgia
« Reply #14 on: April 17, 2009, 09:10:23 pm »


Nancy,
 I also have fibro. I usually take vicotin for the pain. Today has been one of the bad days. Every fiber of my being has hurt. The fatigue is overwhlming at times. But, you do learn to deal with all of it in time. At least I did.

Also, my husband is bi-polar and one of the meds he is on for it is depekote. Works wonders. Without it we wouldn't be together.

Patty
« Last Edit: April 17, 2009, 09:13:11 pm by alwaysthere »
Diagnosed 1/09 1.6cm left side
5/09 2cm
hearing & balance problems
Surgery Date June 25, 2009 St. Mary's Hospital in Rochester, Mn
Surgery went great, can still hear!!!!

"This too shall come to pass and life will go on"

 


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