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jnbdavies - December 14

34yrs old/married/7yr old girl...I HONESTLY thought I was alone. People at my work have never heard of fibro and they dont understand. Giving a HUG is extremely painful. I was diagnosed with fibro 3 years ago and I have had more flares this month the whole time I have had it. I was on Lyrica for a yr until my ins dropped it. So we tried this gabba??? pill and thats a joke. I am currently and for the past 9 years have been on prozac. I tried amtripolyne and I suffered from a bad seisure. so now Im currently on Gabbopenton and prozac and tylenol 4. I had a dr appt today and he told me if I lose weight (5"2 224) my pain would go from 10 to 2. I work for sprint communications so I sit all day. I hurt so bad that I dont go to lunch, I sit there for an hour and listen to celene dion. I am also extremely happy to see fibromyalgia has a purple awareness ribbon....thank you for letting me vent. I have a great dr at scott and white in texas...Im just needing support from someone who UNDERSTANDS. My husband tries to understand why I cant clean or bend down to get laundry, but he tries. thank you again...

 

Stacey373 - December 14

Hi jnbdavies - Welcome to the group! I'm so glad that you found us especially if no one around you knows much about any of this...it can be very lonely if you don't have a support group. Everyone on this forum are so nice and supportive and will try to answer any questions you have or give helpful suggestions. We are all here to listen and vent and whatever you need to feel a little better!

Take Care, Stacey :o)

 

Auvonto - December 14

hey jnbdavies, my first post was venting too. i was so glad to have gotten what i had to say off my chest. i sit all day at my job too and man do i hurt. i hope that you are doing well today (as we take it one day at a time) and I am glad that you found this site. as you will soon see there are some wonderful regulars stacey373 and Fantod are very nice. good luck to you

 

Fantod - December 14

jnbdavies - Welcome to the board. In reading your post, I feel that you really don't have a very good understanding of how to deal with Fibromyalgia. So, I am going to give you a crash course which may clear up some of your questions and help you cope.

Fibromyalgia (FMS) is a disorder of the central nervous system which causes widespread chronic pain. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. OTC remedies do not work for the type of pain associated with FMS.

Fibromyalgia is recognised by the National Arthitis Foundation, the World Health Organization and the Centers for Disease Control.

Hugs hurt because you also have Allydonia which is a condition associated with FMS. I have it myself and it makes wearing clothes, jewelry or anything restrictive or that places pressure against my skin a problem. Some days are better than others. Take some time to read the information in the blue boxes on the lefthand side of this page. There is a lot of good information there. Knowledge is power.

The doctor best suited to treat FMS is a rheumotologist. Have you been tested for a Vitamin D deficiency? This is done with simple bloodwork. Another option is gluten sensitivity. The most accurate result is obtained using a stool sample. Either of these issues will also cause widespread pain.

The three prescribed medications used to treat FMS are Lyrica, Cymbalta and Savella. Cymbalata is an antidepressant which addresses both the pain and depression that usually accompanies FMS. Savella is the newest medication used to treat FMS. It has been used in Europe for decades and was approved for use in the USA in March of 2009.

Gabapentin is typically used to treat nerve pain that can be associated with FMS. I take Gabapentin at night due to degenerative disc disease. I have leg pain that doesn't quit without Gabapentin.

One of the reasons that you are so sore is lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. You should be on a sleep aid. If Amitriptyline can not be used, you should have been given something else. Addressing the sleep issues associated with FMS is a crucial part of treatment.

We all have family members or friends who don't understand FMS. Pain is subjective. For some people, if they can not see it than it must not exist. I'd like to recommend a couple of options in this regard. Go to Amazon and order "Fibromyalgia for Dummies." Like all of the Dummies series, it contains good basic information. Read it yourself and pass it along to your husband, friends and other family members. You can also go online to the National Arthitis Foundation website and use the "search" function to find the information on FMS. Send people a link so they can learn about your condition.

Diet is very important with FMS. If you use anything containing an artifical sweetner (including Splenda) get rid of it. If you need a sweetner use something made from the nontoxic Stevia plant. You can find Sun Crystals or Truvia in the grocery store. Deep fried foods, lunchmeat and red wine (nitrates) will also ratchet up your pain levels.

Your doctor's suggestion to lose weight is a very good one. I'm not sure that your overall pain level will drop that dramatically but you should do it anyway. You would be setting a better example for your daughter and helping yourself as well. See if you can get into a water aerobics program for arthitics. This would be a very slow paced class which you need and it will not place any pressure on your joints. It will be tough going in the beginning but the pay off will be a better quality of life for you and your family.

If you are having problems coping with your illness, I'd like to gently suggest that you consider seeing a counselor for extra support. Ideally the counselor should be someone who treats people with chronic illness. Many of us see someone to help us cope with FMS. You can call Scott & White and ask for the patient referral service. They should be able to match you up with a counselor who uses cognitive behavior therapy to help chronic illness patients.

And finally, I'd like to suggest that you consider getting a second opinion on your medication regimen and treatment plan in general.
I know that you like your doctor but I think that a fresh set of eyes would not hurt. Sometimes, doctors don't really "see" a patient if they have been treating them for quite awhile. Or, they become complacent about handing over the same medication instead of periodically re-evaluating their treatment plan.

I hope that my comments are helpful to you in some way. You are not alone and we welcome your participation on the board. Take care and keep in touch.

 

jnbdavies - December 15

Oh my goodness, I wasnt expecting this type of response...I LOVE IT...thank you, this is just what I needed. Fantod can you adopt me? lol, you hit the nail on the head with being alone.
I went to the emergency with my friend for something totally different and I remember the nurse telling us she was glad she didnt have FMS cause their high maintence and ntheir never satisfied. why do people especially a nurse have to judge? Im human I put my pants on the sameway she does. Fantod I will check into the meds of choice by my doctor. this doctor is my second opinion, however it wouldnt hurt to get a third. :) again thank you for explaining in a english form of what i have. online can really be confusing. now about that adoption Fantod??? lol

 

Fantod - December 15

I've never been asked to adopt someone but there is always a first time! I'm really glad that my explanation was clear and helpful.

I've run into a couple of healthcare providers that have exhibited the very same attitude about FMS. My policy is to get their name and report them in writing to their hospital affiliation and my insurance company. If there is a lack of empathy then they are in the wrong career. And, I am more than happy to politely tell them exactly what I think of their lack of caring. I doubt they would appreciate it if someone treated their mother, daughter or sister like that. Honestly, I really have to wonder what is wrong with people these days.

I hope that you are able to get your meds sorted out and start working on a weight loss plan. The longer you remain inactive the more deconditioned you become over time. Then even the most basic chores become problematic. Do yourself a huge favor and get moving girl! We are all in this together. Take care and keep in touch.

 

jnbdavies - December 15

Chores is a problem, doing laundry is like pulling teeth. the flares are horrible but manageable for now. my dr asked if i was ready to stop working, ummm no, i would be sitting watching soaps with bon bons weighing 500lbs. I need a cane for work but hey i had to leave my pride at the door. and thats where the acceptance comes in...today is day 2 of my acceptance and i feel great about it. thank you for the support my adopted momma...lol

 

uk2 - December 15

I have to say i find your last comment about staying at home watching soaps and being 500lbs abit upsetting only because i cant work due to my fibro i struggled on but had to stop although i do have two other conditions dengenetive disks and myofacial pain syndrome, i have 3 young children all school age but i certainly dont sit at home letting my life waste by the side, i read research the bible as i am a christian, do my exercises,try and do things around the house and have an order to my day and be there to pick the kids up and some how be a normal mum which is so so hard, i have had this for 4 yrs now this jan coming my children are older now but they were only 5 my youngest when it started so its all they have known and although i am more improved then i was as i used to be bedridden for months so at lest i can get about with a cane and if i go out i use my scooter. Glad to meet you all i am sure no offence was ment by the comment i just wanted to put my view across.

 

jnbdavies - December 16

I am so sorry if my comment offended you. in my first thread i put my dr wants me to lose weight for some of the pain to go away and in turn he wants me to stay home. This comment wasnt meant to offend anyone, its telling me not to stay home and eat bob bons. have a great holiday

 

uk2 - December 16

hi, I was just being abit over sensitive i guess as i miss work alot i used to work 30-40hrs a week as a carer helping others now i have to employ people to help me do the housework once a week and when i was really bad 2 yrs ago i had to have a carer come in and help me get dressed and washed. I had put a load of weight on when i was on pregabalin are you on this? or gabaputin they all increase weight and appeaite they give you cravings like when your pregnabt i put on 3 st when i came off it i lost the weight and i have to say i felt better but its impossible trying to lose the weight when on these type of drugs that increase weight. Take care. and merry christmas.

 

jnbdavies - December 17

bless your heart, i hope things get better for you hun. I can relate to the house cleaning, its a pain to get it done, i may look into having someone do it for me lol. im 34 yrs old and in serious pain with this fibro, and the weather doesnt help. I want to personally apologize for my thread, I wasnt trying to offend anyone, however i can see where your coming from with your situation in hand. take care of yourself...enjoy the holidays

 

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