ANA Discussion Forum
General Category => AN Issues => Topic started by: Nancy Drew on April 08, 2009, 01:43:17 pm
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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
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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
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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
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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 :)
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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
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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
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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
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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
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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
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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
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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
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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
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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 :)
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Hi Nancy,
Maybe you are getting tuned in to the Lyrica, and it will work for you. Sounds promising!
Steve
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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
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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
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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
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:)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.
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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 ;D
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
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This all kind of sucks, but I guess it could be worse.
Another good candidate for forum motto. :D
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
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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.
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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.
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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 :o :o :o 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
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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
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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