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Newbie with questions and a lot of pain
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Newbie with questions and a lot of pain

Hi,  I was dx'ed yesterday with Fibro. Dr. put me on Lyrica,  I was on Neuronton for awhile several months ago and it drove me nuts, so I stopped. I am hoping the new drug works.  I am really depressed about the dx and having this stuff for life. I have an appt with a shrink Monday. I started a flare up about 3 weeks ago and am incapacitated. If I do much of anything, I am in agony the rest of the day.  Sleeping is strange. I wake up with my fists clenched and so much pain and anxiety.  I do sleep, but not restfully.  I have pain in muscles, joints and bones....excruciating pain at times.  

I am wondering what you all do to deal with this disease. I am starting grad school next month and wondering how I will be able to handle it. Will I end up having to drop out?  I hope this new drug works for me, but will I be able to make it through a semester of school?  I am leery that I won't be able to.  Do many of you work and make it through the day?  How?  I would love to hear your stories of how you make it through the days trying to be a functional person.  I really don't want to be glued to this bed the rest of my life.  Thanks for the support!

Linda
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350945_tn?1274426721
Hey,
Good morning,
I'm glad you got a name to the pain. I'm not sure how this works but I'd like for you to read my profile.
Here's a quick overveiw of my situation.

I was dx'd a few years back, I've been on various med's. I hope lyrica works for you, because it didn't for me. I started to have miagraine all the time on that one, so I do the neurontin and so far so good.

I agree, you should go to the head dr., being in pain as we all can agree on will take a tall-toll on you mentally. My dr. had to put me on effexor er-75mg 4x's a day and this seems to be the one for me. Often I found myself crying, and had no answer to why I was.

Sleeping, HA! I get it when I can, I go through many changes through out the night, tossing and turning, my legs ache, twitch, burn, etc. at times it seems a though there are being cut off with a very dull knife. My elbows even hurt! Fingers jump, nightmares, hips, butt, thighs, knees everything hurts.

I have a pain in my upper back that feels like a knife being twisted, I have constant pain through out the day, how much or little I've done through out the day determines the level of restfull sleep I'll get.

I'm very surprised that I can actually post today, because I had a very hard night.

Incapacitated, yes to a degree I am. Especially since it cold here in the mid-west.

I'm learning to not let the little thing matter so much, stress and worrying really does something to me. So I decided to stop working, I just couldn't deal with this and the pressures of work. Besides I started to fell real guilty for missing days, and being late that wasn't fair to my co-workers. Even though my boss was one of the first people to mention fms to me, she knew the signs because she has a friend dealing with fms. I had to stop working and am now on disability.

Getting through the day, depends on the day. I had to learn how to pace myself. So if I have an appt. at 10am, I start getting ready around 5:30am. Sometime I have to take an extra pain pill, sometimes I have to lay down a little longer, personal hygiene sometimes is not an option, I'm not able to play with my youngest daughter. I have to keep myself and the house warm. Sadly elastic clothing is very painful. Sometimes it's mild, and sometimes it gets to the point where I hope that I could just lay down and die. This "shawalla hurts real bad!"

And, I refuse to be stuck to the bed. Just to give up! is not a option for me. I know you've heard this qoute before. "Things worth having in life, is worth the fight that you may have to give to get it".

I'd like to be able to tell you that "you'll be fine in grad school". but, I dont know. ??????

Ask yourself these questions, how are you with dealing with the stress?, how are you in starting a new chapters in your lifes book?, will you have additional help? Are you able to schedule class around the best time of day for you? etc.

Well, I hope this help.

Queen


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Thanks for your response!  I didn't sleep well last night either. Went to the store a few minutes ago feeling not much pain. I was gone all of 15 minutes and now I hurt everywhere! My elbow has stabbing pain and I also have neck and back and butt pain.  This is so awful! Most likely since the pain started it won't go away for hours. I just took some extra pain meds.

Grad school for me to become an educational therapist will be 2 classes every 2 weeks. Sounds like an easy schedule, but who knows how that day will be. Once I finish I plan on having my own practice testing kids and adults for learning disabilities. Possibly at home. I don't want to be stuck in this bed, but for now if I do the pain doesn't come as much.  Stress is a killer for me. It is pretty cold here now. I have my fire place going and my heating pad on. I am a real survivor and have had lots of trials and jobs in my life. I went back to college at age 40 with shoulder casts on. I figured I might as well do something since I couldn't work. My husband has an asst. that works here at the house with him in his office and with me, so I have great help when I need it.

I really feel for you about playing with your daughter, that is awful. I had a horrible back injury when my daughter was one.  I had a ladder next to her crib, so she could climb down. I have seven little grandkids under 7 and it is so hard to watch them now, let alone play with them. It breaks my heart.  I do the best I can.  

I have a counselor for my PTSD disability award. She wants me to go to a dr. to get SSI.  I am tempted to do it. Even if I go to school, I could use the money.  Are you getting any support?  The depression is awful when the pain is bad.  I don't have pain at night, but wake up in agony at times.  Will this ever go away?  

I have awful migraines and sure hope the Lyrica works for me. The Neuronton didn't, but I took too much at first and wanted to jump outta my skin. It did seem to help though before the second week.  Thanks again!
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Welcome to the forum - and to the illness - sorry about that : ).  I've had cfs for about 10 years so I've gather info over time.  I don't have the time at the moment to post a ton, but if you read through threads on this forum, hopefully you'll see all sorts of ideas.  Over time, I'll try to answer what I can for you!

The course of this illness is varied from person to person and time to time.  I've improved a lot using little and bigger things, and haven't had setbacks.  If you set your mind to it, most people improve.  Some then platue but usually it's not the end of the world and definitely not as miserable as the beginning is.  (I do know exactly what you are going through and how you are feelng!)

There's a bit of a cycle that sets up.  The pain disrupts quality of sleep, which disrupts the ablity of the body to rest/function/and do what's needed to keep the pain levels down.  So if you and your doc can find meds for the pain that's good.  One doc I heard give an excellent listing of various meds and combos she uses is Dr. Lucinda Bateman who runs the OFFER clinic for FM/CFS etc. in Utah.  It's a whole organization and their website or her office may have info sheets or may take a consult call from your doctor on what to try.  If I got the story right (from her), her sister had this and died and that's what motivated her to open the clinic.  She's a well known expert nationally.  (JCL55 if you read this - I was thinking about her for you too, if your cardiologist would be willing to contact them.)

Neuronton is a touchy drug, works wonders for some, makes others nuts, so your experience with it was normal.

Hope you are having a "good" day.
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Welcome to the forum from me as well.  I'm also recently diagnosed, but have had symptoms since I was 18.  Originally the doctors diagnosed me with lupus since I had some organ involvement as well as bad joint pain and debilitating fatigue, anemia, and raynauds.  My current doctor thinks I might have a mild case of lupus as well, but definitely have fibromyalgia since now I am having nerve and muscle pain as well as joint pain.  

I got through college, undergraduate level, fine. I know graduate school is harder and full of more stress and more work.  I did not go to grad school but my husband has a PhD, so I know what he went through since I was married to him through his graduate school years. I had lots of joint pain and fatigue when I was in college and I probably could have gotten a better GPA if I wasn't dealing with those issues.  I think if I had not worked on top of going to school, I would have done better as well.  I think also if I had asked friends for help.  Or even been on medication would have helped but at that point I did not have a diagnosis of anything and the school's health plan was nothing to be desired.  It was more like a death plan than a health plan.  Make sure you get enough sleep (some people swear by those melatonin supplements to help sleep).  Ask friends for help.  Don't try to do too much.  And plan your days out.  Another thing I shoudl not have done, which I still do, is procrastinate.  Then you end up doing too much in one day.  You really have to plan your weeks out, so you are doing a couple things on one day only, not everythign all at once.

Good luck in becoming an educational therapist.  There is so much need in that field.  My daughter is going through therapy for various delays (she just turned 2), and I have great respect for all her therapists (speech, developmental, and occupational).  You shouldn't not try to go to school because of a health issue.  Just try to work around it.  Two of our therapists work part time since they have families and young kids in school they need to be home in the afternoons for, so if your health was an issue that you couldn't work full time, educational therapy is a field you could find part time work in.  If you work at homes or in a school setting, either way, you can probably find something flexible for you if you had issues with energy or pain.

I am now using Lyrica for my pain.  It has done a lot for my pain issues than any of the lupus drugs I was on years ago.  It hasn't really helped with my energy levels yet.  

You asked if any of us worked.  I used to work full time for many years while my husband was in grad school.  I had to to pay the bills and get him through school.  There were many nights I came home, and collapsed in the bed with my clothes and shoes on and just fell asleep and woke up the next morning tired.  When he graduated, I was able to switch to working part time 30 hours.  I found that 30 hours instead of 40 was what I needed. Eventually I switched down to 20 hours per week.  When I got pregnant, my husband and I decided that if I worked, I would probably come home and not be a great mother, so since we could afford it, I am a stay at home mom now.  I may go back to work once she is in school, but for the time being, I save my energy for my daughter.  I also ask for help.  My motherinlaw moved close by to where we are, and it's hard for me to ask for help, but I've learned to ask for help.  There shouldn't be any shame in asking people for help.  Asking for help from others has taught me to offer help to others, when I'm able.  During flare ups in the past, I have asked friends for help around the house or with cooking dinners that I could freeze in my freezer and taking them out and microwaving them on nights I was too tired to cook.  I have done similar things for some of my other friends when they've needed the help, when I was able to.  Some times with relationships or friendships, they can't be 50-50.  The balance swings a little one side.  Sometimes it swings a lot to one side.  Then it swings back the other way.  Fibromyalgia can impact how you function in life, but you have to just figure out ways to get around things.  Plan ahead, ask for help, or just cut back on things.  Don't fret about cutting back on things, just enjoy the things you do do more.  And talk to people about things.  One thing I regret was hiding my symptoms from everyone, and feeling ashamed or embarrassed.  My friends didn't understand when I'd cancel on doing something last minute and thought I was sometimes antisocial or just rude  or that I was mad at them and was rejecting them.  Once they found out how I felt a lot of days, they were completely understanding when I'd cancel on something or would have to say no to something like goign out somewhere.  I mean, don't tell everyone your diagnosis, but tell your family and close friends who need to know.  

Hope I'm not being too preachy, but that's what I went through in last  15 or 16 years or so of my life.
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Hi

I've been on lyrica for 7 months now and am on 450 mg i have to keep increasing it, it has helped with the spasms and nerve pain as long as i dont push myself and go out the house or in the cold which is hard with three kids under ten.

I take temazapam which is a sedative to help me sleep everynight but sometimes it works sometimes it does not, i didnt get on with diazapam it made me cry alot, i'm also on a high anti-depressant to help me cope with the pain and it has helped, i take dicofenic for the muscle pain.

I'm not dx yet and have been waiting 7 months of tests with a neuro and have been discharged from there and sent to a rheumi so i hope to be dx soon but i'm certain i have fibro or some other pain syndrome as they have ruled out MS.

Samantha
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I am really glad to be here and to find support.  I was on treatment (tx) for Hep C until this past March for 47 weeks of poison, ended up in the hospital with Ischemic Colitis and had to stop tx earlier than I planned. I relapsed, so I still have the Hep C.  I found great support here on Medhelp for it and learned so much, my Dr's say I know more than most GI's.  Hoping to learn more about this disease too.  I started having symtoms (symptoms) during tx, but didn't think it was anything but sides from the tx. I am pretty sure the tx gave me the FM as well as an autoimmune blood disease that put me on blood thinners for life. Too young for all that, but I am a trying not to let it get me.  

Luckily, I have help at home. My husband is an attny and his asst. works here at our home with him and me. Somedays she makes me lunch and picks up scripts. She wears lots of hats, don't know how I would do it without help. The support of others in these communities really is the best.  

I am glad to meet you all and hope to learn from all of you.  Today I asked my husband to pick up a script for me b/c I don't want the pain to flare again today, as I am doing well just talking on the computer and watching movies.  Hope all of you are doing well today!

Hugs,
Linda
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OMG (((Linda))))  I haven't been on in a while and am looking for info for my roomie on fibro and you here are.... so sorry to hear you didn't clear and now fibro on top of it...  I can't even imagine dealing with both. wow woman you have to be one of the strongest women I know.  I finished my TX last june and was lucky enough to have cleared the Hep-c now it's just the 6 mos testing.   Now my girlfriend is going thru mega testing for just about everything right now for her back.  

I posted this to the undiagnosed forum but no replies --
3 years ago my girlfriend started having pain and numbness in her arms. She was seeing a chiropractor for neck pain and then someone fell on her on a concrete floor.  Since then she has had pain all over her body. Initially we thought something had happened to her back.  She has had 3 MRI’s in the last 3 years showing multiple herniated disks, 3 in the cervical area another 3 in the lumbar area and 1 in the thoracic. She went from being a very active mid 40’s woman working 12 to 14 hrs a day and having a life to one who can barely walk without pain and cannot work at all. She saw a neurosurgeon then and he said none were bad enough to require surgery. These have gradually gotten worse over the years but apparently still “not bad enough”. She has shown some nerve damage and is in pain all the time. She just came back from another neurosurgeon who told her that all of the muscles and tissue in her body was inflamed and he couldn’t do anything for her.  Also he didn’t know what could cause it nor did he know who to send her to “it wasn’t his field”.  We are at a loss as to who to go to. She has had rheumatoid tests and they came back negative. For the last 2 years she has been on fairly high doses of painkillers just to make life bearable but this can’t last.  
Someone told her it might be fibromyalgia and the doc had her try a few months of neurontin but it didn't seem to help. we just had her tested for MS  which was negative, so her doc is now trying her on Lyrica - not much the first week but hopefully when she ups the dose maybe it will help.
I have no idea where to turn… I need a Dr House, or to become one, someone who will search until the cause or cure is found. Any ideas on where to start?
Nicki  (painterlady)
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So glad to hear from you and congrats on clearing!!!! I relapsed and now have FM  and an autoimmune blood disease, most likely from tx. Check over on the Hep board, I was amazed at how many people are still there.

Sorry to hear about your g/f.  Sounds awful! I had similar herniated disks in cervical and spine years ago.  It took years to get control of that pain. Pain meds ease it, but dont' help the nerve pain.  I wonder if Neuronton or Lyrica doesn't work if it is not FM. Of course, since she has all that back injury pain and possible FM, it may not work. I am new here and really don't know much.  Check out the sites about symptoms and definately go to a rhematologist to check if she may have FM or CFS.  They tend to wait and watch for many months before they decide if one has either or both apparently. I went to my rhemy for like 7 months before he dxed me.  

At times I have been on high doses of painkillers. The fentanyal patches eased the pain but didn't kill it and that was strong. After that last flare up I Quit them easily and haven't had them since.  Surprised me. I remember when my back injury was acute and was on pain meds, they barely helped.  

Be sure to check out the stories of the people here, their symptoms are more believable than some of the websites of those that don't suffer from FM or CFS.  Keep a diary of her pain over time and see if it all fits.  I sure hope it is not FM or CFS, but it takes time to make the dx. As you saw I am trying Lyrica now and haven't decided if it working yet. It could take some time. Hope it helps your g/f and me too!  Great to hear from you again and hope to see you on the other board too!  

Hugs and love,
Linda
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