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Posted 6/21/2012 7:36 PM (GMT 0)

Hello from Oregon, I am new to this forum and just yesterday was diagnosed with fibromyalgia, from what I have been reading I think the doc got it right. So, a bit about me...

 

I am 47 (48 in August) and 5 1/2 months ago completed 72 weeks of Interferon/Ribavarin therapy for hep C (my disease is still in remission smilewinkgrin  ) I kept waiting to feel better after the poison left my system but I just kept getting worse...chronic pain in joints led me to think RA or some kind of overactive immune system response to my previous HCV treatment. Now that I think about it I had many of these fibro symptoms years before treatment but I wrote them off as related to hepatitus. I am currently on long term disability through my employer and trying to get back to work after more than a year off, and now this diagnosis...Arrrggghhh! The insurance company is now demanding I apply for SSDI shakehead but I am also working with my local state vocational rehabilitation office to find a pathway back to work. These 2 paths seem mutually exclusive...

 

Anyway, back to the fibro issue...my Rheumy doc has prescribed Citaloprane 10mg/day as a starting point...I have stage 4 liver cirrohsis so I don't think I have alot of medication options. I have never taken an AD before and feeling a little bit defeated but will give it a go because yes I AM depressed (really, who wouldn't be?). As for excersize...yoga class 1x/week for the past 9 months, yoga/meditation practice at home 2-3x/wk but it is getting really hard to get back up off the floor, gardening, and walking (when the weather cooperates). I found a warm water low-impact areobics class at the local rec center so planning on starting that next week...We have been thinking of getting bikes this summer but not sure if I will be able to keep one upright, lol.

 

I slowly feel my old life slipping away and with it my optimism. I have been fighting for my life for the past 2 yrs and now I fight for my sanity...thanks for listening and for joining me on the next leg of my journey. I have so many question...

 

donna

 

 

Posted 6/21/2012 9:41 PM (GMT 0)
Hi Donna,

Welcome to the fibromyalgia forum. I am glad that you joined us but sorry for the reason why. I am sorry that you have fibromyalgia and sorry that you have hep c. But from reading what you are still able to do, I think you are doing good things. I walk as much as I can and I also practice meditation. I don't do the yoga but have been thinking about it. I am not as flexable though as I probably need to be for yoga. But the meditation really helps.

I am sure you can't have any medications with tylenol because it is hard on the liver. But there are pain medications that don't have tylenol in them. The doc might put you on a low dose oxycodone or something without the tylenol in it. But I would try the citalopram for awhile and see what happens. It usually takes six to eight weeks to get the full potential out of this type of medication. So be patient with it.

I love to garden too. But the cutworms ate my beans and I had to replant. It is very frustrating. I hope that they start popping up soon. I am getting weeds and I don't want them to overtake my beans. I have to pull up the weeds, but not sure where my beans are for sure... lol...

We have a thread called fibro 101. It is the second thread on the forum. I always direct new members there because there is so much good information on that thread. So please read it when you get a chance. Or visit it I should say.

I sure do hope that you start feeling better soon. Keep doing what you are doing. I know that we feel like we have lost a part of our life when we can't do what we use to do, but I have found even at a slower pace I can still do a lot. I have found new interests. I always walked and I still do, just not as far. Try to look at the good things. I know it is hard, but if you look hard enough, you can find something good about each day. So keep your chin up and keep moving forward. You are doing the best you can and you should pat yourself on the back for that.

I hope that things get better for you. Keep posting and know that we all care...

Hugs, Karen
Posted 6/21/2012 10:04 PM (GMT 0)
Thank you Karen, I will spend some time reading and learning. I felt better after posting...just putting it out there in black & white makes it real and somehow easier to deal with. I'm going to seattle this weekend so decided not to start the citalopram till monday. We are going with a group of friends to see the King Tut exhibit and spend the night...lots of walking so don't want to deal with potential side effects while away from home.

I don't have a big garden, just a few flower and veggie beds here and there. Last summer I was unable to do anything but plan...from my shady spot on the patio, it took me several months but a I managed a bit at a time to dig out the old clay dirt and replace it with good compost soil I had delivered. My other half helped when I asked but I did most of it since I'm not working. We have had a wet and cool spring here but everything is growing like crazy and now harvesting my yummy snow peas.

I take gentle thereputic yoga classes and it has really helped alot. the best part is if you can't do it, you just don't...it's a great place full of 'real' people going through similar experiences so I don't feel like I have to push myself if I'm not up for it.

be well,

Donna
Posted 6/21/2012 10:50 PM (GMT 0)
welcome donna!! sorry you've been going through a difficult time. I'm somewhat new to fm myself. I was diagnosed on june 1st and started on mild pain meds (which helped me sleep..half the battle!!) and topamax and feel just a little better already. ,the fibro 101 helped me and i no longer over do things ,changed my diet and excersise and improved my outlook on life. also am lucky because my sup use to be a RN and her hubby has fm so she has been a lot of help to me. If I could only get rid of this darn brain fog !! I like it here, lots of support!! hope you will find the same!
Posted 6/22/2012 12:16 AM (GMT 0)
I am 73 and have lived with fibro my entire adult life. It has reared its ugly head at times( usually when I have had stress in my life) and its went into remission for months at a time. I take each day as it comes. During the flares I have learned not to push myself. Its a day for the recliner and old movies on tv. I try to keep a positive attitude. I exercise, gently. Range of motion on bad days or even a slow walk around the block. A nice warm bath feels good too. I am glad they are finally recognizing this disease and doing research on it. I don't take any of the new meds for the aches, I don't like the "brain" altering ones. I do take amitriptiline at bedtime for the restorative sleep and that helps me the most.I have learned to pace myself.Sure there are some things I can't do that I'd like to but why sweat it. Everyone has something to deal with in life. I wish you well and keep us informed as to how you are doing!
Posted 6/22/2012 2:42 AM (GMT 0)
I learned alot about nutrition, excersize, pacing myself and testing my limits while on HCV treatment so I feel like this is doable. Unless I am totally incapacitated I won't take any kind of narcotic for pain, too worried about becoming addicted. I'm not too big on vitamins either since I once worked in a vitamin plant (I know too much, lol). Most Rx's have liver repercussions so that's a big thing to watch out for...doesn't leave me with alot of options.

I am usually a positive person but that's hard to maintain these days...I tend to greet each day as it presents itself and go from there. I don't make alot of commitmants too far out in the future or travel too far from home unless I know my partner (also my hero) will be there to drive or rescue me if I need it...picking my battles is a way of life now. I feel like this is more surviving than living which simply is not enough for me...I still have hopes & dreams & stuff to do. It's good to read that how I feel now can be considered a 'flareup' and also gives me hope that making some lifestyle changes could help me feel better and maybe more in control.

Thank you everyone for the responses. I am happy to have found this place!

d
Posted 6/22/2012 4:27 AM (GMT 0)
Hi Donna,

It takes courage to reach out - good for you. And it is hard, fighting depression when your it feels like your body has betrayed you...but you are.

We are always here to talk.

Debbie
Posted 6/22/2012 9:49 AM (GMT 0)
Welcome to the family, Donna :)

I think it is a very positive thing you are doing to practice yoga and meditation. You are doing what you can to help reduce stress...that along with your water exercise is so beneficial and that is a GOOD thing. Any time you do anything to help yourself you are putting yourself in a better mindset. You are making the effort to make positive changes and you will only benefit from it. Wishing you the best...I'm glad you have joined us :)

Hugs, Robin
Posted 6/22/2012 7:06 PM (GMT 0)
Donna- welcome to the fibro forum. I hope you find this site as helpful as I have. I have learned a wealth of information and the best support system you can find. As I was reading your post I thought how strong you must be. You have been through so much in the last few years. You might be like me as you read other post and learn about fibro it will answere a lot of symptoms you were having. I use to always wonder why I had certain symptoms and blame other illness for it. This week I got a detailed book on Fibromalgia and now I know why I was having all these crazy symptoms. I use to go to my Dr. and complaine about all these weird symptoms. All I got was I don't know or I was called somatic person. I am happy to say that after finding this site my health started to improve. I learned how to manage my fibro very well now. I feel the best I ever have. I don't take fibro meds because I see others take it with little results. I try to keep my regimine simple and most natural. I do take one drug for fibro and it's for pain. It's called subutex. It has no Tylenol but not sure on the liver part. I hope we can be a support to you. Let us know how you do on your new med.
Posted 6/23/2012 12:36 PM (GMT 0)
Hi, Donna, and welcome!  You have gotten some great comments here.  If you have problems getting off the floor, you might want to try something else.  I tried to clean under my kitchen sink last week and couldn't get up, either, and I was by myself!  I finally managed but pulled more muscles in my legs and butt doing it, but at least I'm upright now!  LOL

 

Walking is my favorite forum of exercise.  If the weather doesn't allow, I have a great walking-in-place video by Leslie Sansone that I throw in the DVD player.  It has some aerobics to it, too.  This might be a good idea for you.

 

It sounds like you are doing really good things for yourself.  Right now you just got the diagnosis so that's like another kick in the gut.  We all go through that but, once it settles in our brains, we do just fine.  Humans are so adaptable and we figure out how to work around illnesses to do what we want to do.  See what your worst problems are that could keep you from doing what you want to do and try to figure a way around them.  If you can't, ask us and maybe we have experienced that or have an idea for you.  I'm all for living life the way we want to live it.  I've dont 95% of what I've wanted to do in spite of fibro and other illnesses.

 

A positive attitude has helped me sooo much....almost as much as any medication.  When I feel down, I just look around at all the blessings I have.  It helps if you make a list of the things you CAN do as opposed to the things you can't.  I bet your "can do" list is much longer!  There is a great link on Fibro 101 called Maintaining a Positive Attitude.  This might help you too.

 

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 6/26/2012 7:16 AM (GMT 0)
Hello again and thank you all so much for the kind words and welcome. Getting away from home for the weekend was very good for my overall outlook and am really glad I waited till today to start the new med...been exhausted & nauseus all day.

Wow what an adventure this weekend! Saturday we boarded a tour bus in portland at 7am. There were 10 (all good friends) in our group plus 20 or so seinors from a retirement center nearby. I am not very mobile in the mornings and have insommnia so...yeah, fun! The bus wasn't full so was able to get up and move around and I felt good by the time we got to seattle. The King Tut exhibit was very cool (thank goodness for thoughtfully placed benches throughout). A 40 minute IMAX movie at the end about the discovery of the tombs was facinating and I got to sit (yay)...after a 9 block walk to dinner & back I was toast!

Woke up at 3:30 with tear-jerking pain in my hip so...I really was sleepless in Seattle (No hot tub or bathtubs in the fancy hotel...seriously?)

Sunday, we packed up and checked out leaving our stuff at the hotel...walked to the monorail and headed to pike place market. Did I mention the pride parade? Pride fest? Seattle center 50th anniversary? Getting sorta lost?

By the time I got home late Sunday night I could barely walk, my knees were knumb & I hurt everywhere. Took a warm bath and off to bed...at least untill the hip woke me up around 5.

I know I shouldn't try and do so much but I like to think I am an expert at picking my battles. I had an awesome time just doing normal things and being with friends. Today, I spent the day on the couch and went to yoga class this evening...still nauseated. Probably not done paying the price of all the extra activity either cool

Tomorrow is my therapy appt so of course we will discuss this new Dx and med...maybe I will fess up to the depression too but I suspect he already knows, lol.

Sorry for the rambling but as usual, it's late, I hurt & sleep is not my forte.

Hope you all are well, see you soon.

d

 

Post Edited (Donnak64) : 6/26/2012 1:19:54 AM (GMT-6)

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