'A Patient Voice' Community

Dear cyndisparkle,

I am sorry to hear about all of your health challenges, but I am glad your children are so supportive. Do you see a psychologist? They can sometimes really help not only by giving you a place to vent and air things, but they can help you learn biofeedback and cognative therapy techniques that may help you get through some of the anxiety and bad patches.

I have fibro, CFIDS (chronic fatigue), osteoarthritis, and arachnoiditis, but I can make many days entirely medication free thanks to cognitive techniques. When I do take medication, I can almost always cope with ibuprofen. I was very blessed to have family members and friends with degrees in psychology who helped me. I use self-distraction and positive imagery a lot! Here's a link to the Positive Thinking Toolbox that may be interesting.

Best wishes,

Byroney

Hello cyndisparkle.....MiMi in NC...and I normally post on the Fibromyalgia Exchange .....I would like to invite you to check us out.....we have a unique group of people there....a good variety.....a few men, mostly women.....some young, some older....some retired, some still working...some not able to work....and a lot of good information....

I would encourage you to ask your doctor to check your Vitamin D level, if you have not already done so....this is so very important....low Vitamin D is common for us FMers...and causes us additional pain....a simple blood test....but you MUST ASK your doctor to do the test...

I have learned how to "control my FM pain" by taking vitamins and supplements.....I take magnesium and malate combination supplement, Vitamin D, Omegas, Calcium and Super B Complex....plus others....but these are the ones which help me the most....

I do take Pristiq for depression....and I have muscle relaxers also....but I only take them when I have to...

Gentle exercising or stretching can help FM...and also moving as much as possible....learn how to pace what you have to do...heating pads help a lot as does hot showers with lavender bath salts right before bedtime to help relax you....

It is hard for anyone who does not understand to know what we FMers are faced with the wrath of the dragon, aka FM...I do not think the doctors understand and I know my family and friends do not have a clue....for the most part....my daughter is the only one...and she has chronic pain from a car wreck...

Anyway....I just wanted to reply to your post and tell you about the FM exchange....I hope you will visit soon....

Take care and good luck...


MiMi

Hi Cyndi, Great to read your letter and I literally feel your pain. My blessing is that my mother has RA so she understands my RA and fibro pain.

It is really difficult to make people understand chronic pain and what it means when you can't do something. You are not lazy, bitchy, selfish,or self absorbed. I just returned from a trip to visit my "best friend" who acted really put out when I couldn't walk all over Chicago and didn't understand why I needed to sleep so I could function. It was awful and made me feel like crap.

People do judge you and it is hard not to be bitter. I never wanted to read these message boards, but your posting changed my mind. Thanks for sharing...seriously. I needed to hear someone else say all the things I think every day.

Before I go, remember this, you are not your disease. You have a disease. And ALWAYS practice better living through chemistry : )

I HAVE FIBRO ALSO, AND I FIND THE WORST PART OF FIBRO IS THE FATIGUE, I JUST FEEL LIKE I CANNOT FEEL RESTED, EVER. I'VE TRIED CYMBALTA BUT I AM ALLERGIC TO IT, I'VE TRIED TO LYRICA WHICH WORKED BUT I BECAME IMMUNE TO IT AFTER AWHILE AND LOST IT'S EFFECTIVENESS. I NOW AM TAKING SAVELLA AND I SWEAR THIS IS A WONDER DRUG. I'M STILL TIRED, WHICH I GUESS I WILL HAVE TO LIVE WITH, BUTTHE PAIN IS LESS WITH SAVELLA. DO YOU FIND THAT YOUR LEVEL OF ANXIETY AND DEPRESSION HAS INCREASED? I TAKE MEDS FOR EACH OF THESE. I HAVE BEEN DIAGNOSED WITH PARKINSON'S DISEASE AND I'M A DIABETIC. SO WITH ALL OF THIS, IT SEEMS TO BE OVERWHELMING, BUT I HAVE NO CHOICE BUT TO COPE WITH IT.

Hello Ihave been having chronic pain for about eight months now. The as put fibro on my charts with arthitis. I have been trying to manage it with pain pills and muscle relaxers but it seem to be getting worst I am going to the doctor tosay to figure out something else cause this is getting the best of me in my everyday life. coming home from work yesterday I cryed most of the way home and I am so tired all the time I don't even want to go anywhere. yesterday told me I was not handling it right so I am hoping the doctor visit will help. reading all the posts I have hope but it is getting hard. thanks

How long have you been on savella? I've been taking it about 6 weeks and I agree that it really is a great drug. I seem to have more energy because the pain is less. I still have days...but it is much less. What do you take for the anxiety?

Hi cyndisparkle , It is nice knowing there are other people going thru the same thing as me. I also do the best on Tramadol one at 6am and another around 1pm . Then at bedtime a hot bath with Epson salt and a vicodin, I can usually sleep 6 to 7 hours without waking up in pain. The only bad part is my doctor will only give me 90 vicodins every 6 months so I can only take one every other night. So the nights without one I wake up about every hour or so and have to find another way to move to lessen the pain. Does your doctor give you what you need? I am wondering if I need to start to insist on having 1 a night, I might end up losing her as a doctor, other than that problem I really like her. I also try to walk an hour a day, and do light weights at the gym 3 days a week, that helps me alot.

Hi Cyndisparkle,
I have RA and FIBRO. and I suffer from depression, the RA is in my hands and hip, and I think you must ask your doctor to check your vitman"D".
I am finding that if I keep my weight correct and do gym at home, I am ok for the day, You have to give up all the junk food, and cold drinks. To stop the cramps I have a bag that can be put in the micro wave and heated, I sleep one next to my hips and one next to my hands and I don't wake in the night. I find the heat helps the pain.
To make others understand my pain,I made a note out of red paper and bold black writting and placed it in the back windows of my car doors, saying I have FIBRO and can you help me pack my bags.. It works, most of the times some one will offer to help me. Some times I have to tell people what it is, you will be surprised how many people have never heard of FIBRO. I take Efexor for depression, this also helps keep my weight down, and Tramahexal for pain, for RA I take Coxflam and Methotrexate. I wake up thinking of having a good day, and I put my mind to doing something does not matter how small, I run my own business so as not to be depressed I try to finish something each day. I have small note in my office to cheer me up when I am down. I have a wonderful husband who is a doctor.

Best Wishers to all.
the sewing room

Hello, I have Fibro, sleep disorder, severe migraine headaches, buldging and deteriated disks in back and neck, narrow nerve endings from spine to hip and I have gone through everything regaurding family/friends get togethers as you have. Part of my pain, lack of support and inability to do things as I used to caused my first divorce after 26 yrs. of marriage. Therefore I moved from NE Ohio to Indiana & now KY. The support I have now with my significant other is wonderful, especially after what I have gone through the last 1 1/2 years trying to find a doctor who deals with mid age woman w/fibro. Before I found the doc (going since March2010) I had to deal w/docs and pain treatment doc (unessessary) who did NOT care about my prior tests, treatment and the only thing that worked so I can semifunction. The most recent med that my new doc prescribed is Methocarbamol 750mg 3x day (generic for Robaxin a muscle relaxer), which was presc.for an injury after fall in jan. to my neck. After taking this for 2 wks. w/ my vicodin I had no side effects and it seems to help with the ache and pain assoc w/fibro eccept on cold rainy days. I am 51 and since I have progressively gotten worse over a period of 4 yrs I filed for SSD & SSI last aug. I have been denied 2x since and and now going to hearing. I am so disappointed in our system after working my butt off for 30 years and paying for this and am having such a hard time getting any assistance. Most of my records dating back to 3 docs from moves are not even considered. Well Good luck to you hope I helped w/ the meds.

Hey Cyndisparkle, I have been suffering with this since 1999. And I can tell you I have found no relief from any of the meds out there. I also have the arthritis and a diagnosis of spasticity of the muscles. Which means my muscles are in a constant state of flexation.[If thats even a word>. So constant pain is an every day given.I wish you oodles of luck in finding the right path for help. I have not. My next diagnosis will be M.S., it seems I am headed on that path. Good luck and God Bless You on your journey. I do not have any support on my side- I am in this alone.

I can't believe there is finally a good board for this. It is nice to talk with others, read what others write. I know that you all really understand. I mean REALLY understand. Not like the "oh i understand" that i get from people who do not have any type of chronic pain, let alone FM. I have FM, chronic fatigue syndrome, RA, OA, sciatica, bulging disks, disk disease yada yada.
I have been going to PM for a bit now. I tried Lyrica last year and it made me really sick, took away my mobility completely (Used walker) and my speach was all messed up. Now i am on neurotin, methadone (for pain not drug addiction), flexaril, tegretol, paxil. The tegretol is for my bipolar disorder . I had the Gastric Bypass 8 yrs ago next week so i cannot take NSaids regularly. I do my best to get up and move around. With the methadone and neurotin i do alot better then before the methadone. I know exactly how you all feel about the judgement. I was recently told by someone to "suck it up" are you kidding??!! suck it up. If i could i would, do people think we CHOSE to live our lives in constant pain? That we CHose to always be tired, not able to move like we used to? I would LOVE to be able to go for a walk. I miss going for them. I am not able to walk more than 1/2 block before the sciatica gets so bad i am in my wheelchair. And i really hate that thing. But if i am to do anything i have to have it on hand. How do i come to accept that i need the wheel chair? or that i need help on anything? My husband has chronic pain, he doesnt understand although he tries. My best friend has sciatica and knee problems but as she says she is able "to push through the pain" i KNOW she doesnt understand because i am not able to PUSH thru the pain. I got tired of complaining of my pain, or feeling like i am when someone asks how i am. So i say i am peachy, it isnt a negative word so i use it. Many of my friends and my husband all know that if they ask me how i am and i say peachy but great, that means i am in pain but everything else is good.
i really am so glad to have found this ...hang in there everyone. may you have a less painful day and more things to smile about today

Be careful with Savella. I loved it to and had great 8 months. suddenly Blood Pressure out of control 218/119. Wish I could take it.

Hi, I am sorry regard your pain. I have five types of Arthritis and here is what I do daily. Fibro is the worse.
I stretch when I wake up and if my arms or legs get sore during the day, I stretch more.
Cramping, I use yellow mustard and keep cramps away.
Every few hours I use capsaicin ointment on the sore spots.
This will keep some pain away if used on a continual basis.
When I tuck myself into bed, I apply a bar of Ivory soap on the the sore spot and wrap a piece of fleece material around the
sore spot and soap. It helps.
Hope these help you. I am glad your children understand and support you. Not all families understand the pain we have with
Fibro.

SORRY UR FEELING UNDER THE WEATHER, I KNOW HOW U FEEL, I ALSO HAVE BUTTOCKS PAIN, CANT SIT TO LONG CUZ IT SENDS PAIN EVEN DOWN MY LEGS,HOPE UR FEELING BETTER SOON