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uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 3/6/2010 5:04 PM (GMT -7)   
Hello...I am new to the Fibro forum but I usually post on the CP forum as I've had CP for well over 20 years.  I've been seeing the same PM Dr. for over 5 years and she just told me that I have Fibro at my last visit in Feb.  It has been bad enough having CP...nor to add this to it?  I'm not handling it well.  I have been in such bad pain for the past week...just like when I had a ruptured disc back in 1999.  I can't stand up straight, I'm all hunched over...in such pain...
 
She gave me sample packs of Savella to take...ending up at 2/50mg. a day.  It makes me so nauseous that I can't take them like I should.  I've taken Lyrica, Neurontin, Celexa....currently I take 120 mg. Methadone a day along with 4/30 mg. Oxy IR's for BT pain.
 
Since I'm not familiar with Fibro can you help me out?  What can I expect? 
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 3/6/2010 5:32 PM (GMT -7)   
Hi uniquelyme, welcome to the fibro family! Looking at your signature it looks like we
have some health issues in common. There are many of us with fibro with simular health problems. I'm sorry that another diagnosis was added to your list. It does feel overwhelming sometimes. I'm so sorry you are hurting! Sending a gentle hug!!!
 
Taking one day at a time helps me. This forum is friendly and caring. We do
what we can to help eachother.

If you haven't already, do check out fibro 101. It is a great resource filled with helpful
info for us fibromites. I 'm on savella also. My rheumy gave me 2 triation sample packs,
that way your body gets a gradual dosage and is able to adjust easier. I never had any
bad side effects. I have been on it since mid July and now taking 50mgs 2x daily. I can't
say I'm pain-free, but it has helped. I take a muscle relaxer, cyclobenzaprine for flares.
When i first started the Savella I took my 12.5 mg with food before bedtime and that was to help with nausea. Call and let your doc know if you aren't able to tolerate it.
perhaps a lower dose can be given. Hope you can find some relief!

We love heat to help with the pain. Many of us use bed buddies or heating pads, take long
hot showers or soak in the tub. Finding an excercise you enjoy helps with the stress, and
gives you energy. I have also been through back surgery, a lumbar laminectomy, and
walking helps me. Some of us enjoy water excercising, the important thing is to keep
your muscles moving.

i'm glad you have joined us! I'm sure others will be on to welcome you.

hugs, Robin


Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 

Post Edited (crazykitty) : 3/6/2010 5:47:16 PM (GMT-7)


willowsgrandma
Regular Member


Date Joined Jan 2010
Total Posts : 78
   Posted 3/6/2010 6:18 PM (GMT -7)   
turn yeah hi uniquelyme! i have been on savella and gabapentin 2 weeks and i definitely have less pain than when i was on lyrica(75 mg 4xdaily). i'm also taking 50 mg 2xdaily. i agree with robin-be sure to eat a little or drink milk or oj. i'm sorry you feel so badly. take care. Donna smilewinkgrin turn tongue

college coaches wife
Regular Member


Date Joined Mar 2010
Total Posts : 61
   Posted 3/6/2010 10:05 PM (GMT -7)   
Hi uniquelyme!
I just started on Savella too. My Dr put me on a sample pack to start out as well. She had gone to a fibromyalgia workshop and spoke with a fibro Dr and he started his patients on this starter pack and even has you split a 25 mg and take half the pill in am and half in pm. Do this for 2 weeks and split the 50mg tablet and take half am and half pm. I do this and I don't have nausea so far. Good luck.

arizona_lady
New Member


Date Joined Mar 2010
Total Posts : 2
   Posted 3/6/2010 11:11 PM (GMT -7)   
Hello All, I am new here as well. Probably like those who have landed here, I have been on the net searching for more info on fibro. BTW, this is an awesome site. I have been on it now for probably two hours reading and soaking in the wealth of information here, thanks to all of you!! I recently have been diagnosed with fibro, CFS and Epstein Bar Syndrome. Since 99 I have suffered from a very bad back, too much to go into detail here, but recently after what I now know as a flare, my new doctor explained that it was indeed fibro. I found my new doctor after the one I had looked me in the face and told me it was time to find a new ailment that there was nothing she could do and she was not going to help me become a drug addict! I was in total shock and when I picked up my records to take to the new doctor, I read in her notes she thought I was wanting more narcotics, although my dx's did suggest otherwise, she really did not believe me but I did appear convincing! Anyway as far as I am concerned that is all water under the bridge. My new doc on the very first visit explained exactly what was going on and why he diagnosed me with fibro, cfs & ebs. I did have blood workup, which was normal and positive for ebs. He seemed so knowledgeable from the get go and then I learned his wife also suffers from fibro & cfs. He has researched and dealt with the subject for years now. My angels knew just where to send me, and now I have found this site and everyone here seems to be genuine and very helpful. Just so you know I am a 53 yr old grandma, I do believe my mother suffered from fibro as well, but in her time there was not a name for it, now she lives in assisted care at 73 yrs old and is in stage 3 of dementia, does anyone know if there is a connection, do people with fibro have a higher rate of developing dementia? Is fibro hereditary? I am sure most of you can understand my excitement of finding you. There is a healing effect when someone understands what you are going through. I have lost a measure of closeness with many friends due to this condition from being in bed for days at a time or just knowing that an outing would put me in bed for a few days. No one understands unless they have been there. My dreams of being the sweet doting grandma had to be changed, just the sound of my two little grandkids running and playing can be so stressful, and I am too afraid to take them on an outing, they are 4 & 5 yrs old and if they were to get away from me I don't think I could adequately protect them. And then my poor husband, he is so compassionate, caring and understanding but at night just to accidentally lay his leg over mine has caused me to winch out in pain, even a gentle hug during a flare he feels bad about. Until recently we did not know the why of such extreme pain and fatigue, it is all making sense now, the last 10 years the craziness of what was going on, I only wish I had found my doctor sooner. At the moment I am on oxycodone, gabapentine, zoloft and a muscle relaxer. My doctor is encouraging, he is willing to try until we get the right combination for me, I would rather do a non narcotic for the pain but he doesn't think it will be adequate. I have seen other meds listed here, so at least I will have knowledge of them if and when he suggests. I just hate to take something I have never heard of and then down the road find it causes some sort of something worse than fibro. But with fibro I am willing to try anything I am so tired of the pain, depression and the impact this has on my life. What about supplements, please shout out anything you may have used that helps. I try to keep up with the B vitamins, fish oils etc. I look forward to hearing anything anyone wishes to share. I am new to this and am so so tired of the control it has had. Thank you all!

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 3/7/2010 6:15 AM (GMT -7)   
Hi, Uniquely Lyme and Arizona Lady, and welcome!  Fibromyalgia can be a very ugly illness but, once you get control of the pain, you can really enjoy life again.  I know that I have.
 
Be sure to check out Fibro 101...the second thread on the forum.  There are links to good information about fibromyalgia and you will learn a lot there. 
 
It is important that you keep moving with fibro or you will be stiff as a board.  Gentle exercises are very good to do and there is a link in Fibro 101 with some good stretching exercises that really do work.  Also, you need a gentle regular exercise, too.  I walk and swim as my exercises.  When I started walking, I couldn't go more than four houses down and had to come right back.  But now I can walk long distances and I feel so much better when I get back home and have more energy!  And, when I'm in the water, I really don't have pain.  The weightlessness that water causes is so wonderful and you can move much more freely.
 
Moist heat is our friend.  Many here have a Bed Buddy.  You can get these at Walgreen's and other places or you can make your own by taking a tube sock, filling it 2/3's full of raw long grain rice and tying a knot at the end.  Pop it in the microwave and this gives off moist heat due to the moisture in the rice.
 
I use ibuprofen (2,400 mg per day), extra strength Tylenol (4,000 mg. per day), malic acid/magnesium supplements and Vitamin D3 to help with pain and fatigue.  There are links about the malic acid and the vitamin D in Fibro 101.  Many with fibro are deficient in these vitamins and nutrients.
 
Be sure and pace yourself.  You can't do everything you used to do in the same time frame.  You can get it done but it just takes longer.  I'll work a little, sit a little, work a little, etc. and that helps too.
 
Attitude plays a big part in fibro, too.  Always try to look at the things you can do and don't dwell on the things you have difficulty doing.  Find things you can do that takes the focus off the pain.  I find that the pain will fade some in the background when I do that, too.  With fibro, the pain waxes and wanes so you will have bad days and better days.  Because of that, I look forward to each new day with anticipation and I do take one day at a time.  If I'm having a bad day, I know that I can handle that and look forward to the following day.  See what I mean?  I know I sound like a Pollyanna but this does help me a lot.  I'm a positive thinker and this has helped me with depression and anxiety that usually goes along with this illness.
 
A good sense of humor is wonderful...especially when it comes to fibro fog!  shocked   We have had many laughs over some of the dumb things we have done....like when I tried to start my car with the key to my freezer!  tongue
 
Anyway, I'm glad you are here and have joined our family.  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from both of you soon.
 
Sherrine
 
 
 


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 3/7/2010 6:22:24 AM (GMT-7)


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 3/7/2010 9:06 AM (GMT -7)   
Hi Uniquelylyme and Arizona Lady and welcome to the family. Looks like Sherrine has pretty much covered everything already. Sadly, many with fibro are labeled drug seekers. For those that label fibromites as drug seekers I wish they could walk in our shoes for a week during a really, really bad flare. devil But the truth is, I would have never understood fibro if I hadn't gotten it so I don't expect the "normals" to understand it. That is why this forum is a godsend, everyone of us understands each other and you don't have to explain how you feel.
 
When I read that someone has stayed in bed for days I cringe at the thought. As soon as I'm awake in the mornings, no matter what time it is, me and the bed have to part cause if I lay there I start to hurt. I can't sit for too long either or it makes the pain worse. We really do have to do a balancing act with how long we can do anything.
 
We tend to over do on good days than we pay for it so you even have to keep a balance when you are having a good day. This is a real problem for me cause I'm pretty hard headed and I'm paying today for a decorating project I have going on in my living room that I didn't have the patience to wait for DH to help me with.
 
Keep reading and asking questions and we will help you.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


arizona_lady
New Member


Date Joined Mar 2010
Total Posts : 2
   Posted 3/7/2010 4:04 PM (GMT -7)   
Thank you Sherrine and Marlee! I am so glad to have found you. I really don't know of anyone who has fibro other than my docs wife and we really don't travel in the same circles if you know what I mean. In reading all the post I have gotten so many answers to my questions as well as how to explain it to someone else, or give the the jest of it. At the moment this site has given me alot of comfort, I truly thought I was going crazy, not to mention my own self awareness has taken so many blows over the last few years because of this illness I was not aware of. I used to hike, garden, clean house immaculately, be active in all sorts of stuff, but as the years have gone by I have slowed almost to a halt. I have days when I cannot get out of bed, I used to be like you Marlee when I woke up I had to get up, I wish I could still do that, but I got up to be active. If I get up now its to move to another room, stretch, clear the fog but never moving too fast. Oh and the fog is absolutely horrible, thats why I was asking about the dementia, I have been scared to death I was starting into dementia, thankfully the doc said no it's the fibro fog. But will it get better? The one thing I have not found here is someone saying that it will all go away some day. But I am finding good advice on how to deal with it. I will keep reading and asking questions. Thanks for being there.

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 3/8/2010 3:22 PM (GMT -7)   
Wow!! Once again I am blown away by this site...I have been on the CP site for a long time and they are wonderful to me....now I have a whole new family here.... I didn't know much about Fibro...I thought it was just a "Catch-all" DX for pain the Dr. couldn't figure out....Bouy was I wrong... I have been told that I was a "Drug Seeker", a "Hypochondriac", a "Depressed woman looking for attention"/  What else?   Hmmmmm.....not to mention what the jerk pharmacists have said to me.... Now I have something else....I hate it!!  My family thinks I'm looking for things to be wrong with me.
 
I didn't want any of this....Who would?  I (and all of you) don't want to be sick or feel sick....I'd much rather be and feel normal...whatever that is/  So I'm gong down this new road with all of you...we are all at different stages of the game, but it's nice to know you are here...
 
Thanks,
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


nana2be
Regular Member


Date Joined Mar 2010
Total Posts : 42
   Posted 3/9/2010 11:52 AM (GMT -7)   
Hey everyone. I am newly diagnosed also. You guys are a great source of information, support, caring and everything in between. I thank you from the bottom of my heart. I started Cymbalta (30 mg for 14 days then up to 60 mg after that) last week and had a rough few days at first. Now I can function more than I could a week ago. The hardest part for me is being able to balance life. Like you say on good days I want to go full force, but if I do I end up crashing for days. Emotionally it's hard knowing I'll never be the person I used to be, but at least I can function and smell the roses so to speak. :-) Thank you all for sharing your experiences, what works for you, what doesn't and how to live life with this mess. I will continue to read (love the Fibro 101) learn and live life. I have a wonderful support system which helps. My dr signed the papers today for me to get a handicap place card!!! (very fortunate to have a great doc too) I look forward to getting to know you all and in the future knowing enough about fibro to help someone else. For now the best advice I can give is not to be hard on yourself for things you can't do, take care of yourself, take you meds, exercise gently and enjoy the good times.

Sorry I got winded. :-0
Take care!




DX- Hypothyroid, IBS-C, Fibromyalgia, Low Blood Pressure

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 3/9/2010 12:49 PM (GMT -7)   
Hi Nana2be and welcome to the family. Does you name mean what it implies??? smilewinkgrin It is so comforting to know you have a Fingertip family just a few clicks away when you need them.
 
Yes, I have had bad flares when I couldn't stay up for any length of time and spent most of the day on the couch laying down. I am very lucky that those days don't happen very often. I guess my problem is more waking up in the wee hours and having to get up due to pain but once I'm up the pain gets better but there is no going back to bed and going to sleep for me.
 
My fog is so dense today I have been in a daze. I lost photo paper somewhere between getting it out of my office and the family room and have yet to find it, even looked out in the yard to see if I layed it down and the dogs grabbed it and ran outside. Guess it will show up sooner or later. I use to freak out over things like that but know now that tomorrow will be better, maybe. I do have to drive today and don't really like too when I'm in such a fog but hopefully it will get better.
 
luv and hugs
Marlee
 
 
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 3/9/2010 9:40 PM (GMT -7)   
Welcome Nana2B.....Glad to have you.  This is a great site....lots of info. and support.  Glad that I go between here and the Chronic Pain forum....These people are my family.
 
You are lucky to have such a great family at home and now here..
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


nana2be
Regular Member


Date Joined Mar 2010
Total Posts : 42
   Posted 3/10/2010 5:38 AM (GMT -7)   
Thanks everyone. Yes, I will be a grandma next month to a little boy, Logan. (really excited!!!) Learning to slow down to smell the roses is the most difficult thing, but I'm getting the hang of it nicely. haha I make my "To Do" list and mark things off as I get them done. If I don't get them done I know tomorrow is another day and it doesn't depress me like it used to knowing I still had things to do. Now my husband and I joke about putting things on the calender.

I am very fortunate to have the people in my life and now all of you. Thank you! yeah

I hope you all have a wonderful day, free from fog and pain!
Cathie-aka Nana
Diagnosed-

Hypothyroid
IBS-C
Fibromyalgia
Low Vitamin D

Meds

Synthroid
HCTZ
Aciphex
Ergocalciferol (Vitamin D)
Fish Oil-Omega 3
Low dose Asprin
Cymbalta


drmike49
New Member


Date Joined Mar 2010
Total Posts : 2
   Posted 3/17/2010 5:52 AM (GMT -7)   
I was diagnosed in August 2009. I have suffered with this disease since 1988 not knowing what the problem was. Being male I decided to just "push through it" and that worked for many years. I would have days when I had great difficulty just coping but somehow made it. The pain I had was more of an ache I suppose because I forced myself to keep moving. In 1998 I ruptured three disks in my back and had to have surgery. After the surgery and general anesthetic I was pain free for about 45 days. I truly thought my constant flu was over. When the next flare came it was so bad it put me in bed for several days. I felt as if I had been hit by a truck. Next came the Costochondritis which stopped me dead in my tracks. Could not take a deep breath and my favorite activity - golf was impossible. If I forced myself to play I would be in bed for a full day to recover. I really never fully disclosed all the symptoms to any medical practitioner because I was already aware of FM and did not want that diagnosis on any of my medical records. Last year at age 59 I decided to see one of the preeminent FM docs in the country and was diagnosed with FM. He studied me for nearly two hours and then told me what to expect. He prescribed Klonipin and Tramadol. I could not tolerate the Klonipin but the Tramadol gave me some relief from the pain. I am a psychologist and have an aversion to Rx meds. I do not fault anyone who takes them, they are just not for me. I was elated to find this website with so much anecdotal and clinical information about FM. In FM 101 there is a thread about Vitamin D and Malic Acid with Magnesium. After researching this I have ordered the Malic Acid with Magnesium from Puritans Pride and bought the Vit D this am at Sam's club. I also began a good multi vitamin today. All this has come about because of recent changes that have forced me to look more deeply into FM. My legs feel as if I have walked for hours on a treadmill when I'm at rest. Then when I get up to walk they feel heavy until I have walked for a minute or so. Then I feel as if I could walk all day - till I sit down again. The phenomenon of swelling without swelling is also present with the typical aches and pains all FM suffer in varying degrees. I thank all of you for sharing your stories as they helped me make some decisions I have been putting off. I may not post often, but I will be reading and learning from others who suffer from this vicious disease. Thanks again.
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