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Newbie, not sure what I am feeling
6 Replies
Taleese - December 8

First of all I would like to say I am thankful for coming across this group.
I am a 35 year old stay at home mom of 4, married to a great man who is just as lost as I am.
November 1st, 2007 I was rear-ended on the freeway and shot off into a ditch, trying desperatly to keep my van upright as my twins were in the car with me. From that day on my life changed. Not only was she uninsured(thus all the medical expense we have had to endure) I ended up with a herniated L4-5 and 6 months later still couldn't sleep, had such pain all over and no one could explain. I was finally sent to a pain management specialist who did the pressure point testing and 15 out of 18 points later I was diagnosed. From then on life was just not the same. I felt like all the fight I had gone thru thus far to find out I would never be my old self again and play with my kids the way I use to and so on.
Lately I have been suffering so much pain in all my joints from my hips down, clear to my toes. I get a burning sensation from my elbows down my forearms often.(anyone else get that?) I eat and eat some days and others nothing sounds good. Needless to say not much of a sex life, some days i just want to sleep. If it wasnt for my kids some days I wouldn't get out of bed. Some days I want to cry over nothing others nothing bothers me. I am just so confused and frustrated and tired, tired of hurting and no one understanding, or calling it fibromagination. Lost most friends or they dont come around as they cant get how i can hurt.
I do take Lyrica, 3xday and some pain meds but I was wondering is there any other advice or guidance one can give me. Even on the meds god there are days I want to hurt someone cause I hurt so darn bad.
Suggestions, comments, guidance, anything

 

Fantod - December 8

Taleese - You must have been scared out of your mind when you got hit with the twins in the car. Welcome to the group; I'm glad you found us. Have you seen a rheumotologist in addition to a pain specialist? You can go to the National Fibromyalgia Association website and ask them for a referral to a fibro-friendly rheumy in your area. I'd still keep the pain specialist, but you need a fresh set of eyes to take a look at your situation. I have both and they work in tandem. As for people referring to fibro as your imagination, fibromyalgia (FMS) is recognized by the Center for Disease Control and the National Arthitis Foundation. If these comments are coming from friends and family members - shame on them. Show them this site; reading some of the posts from other people may affect a change. Fibromyalgia is a short circuit of the central nervous system. The pain receptors get stuck in the on position. The mechanism that causes fibromyalgia is still a mystery. It is poorly understood by the medical profession and the people who have it. Take some time to read the information on the lefthand side of this page. You need to become an educated consumer when it comes to handling this problem. I have dengenerative disc disease which really adds to my pain issues in the pelvic area. The disc failure is what started my fibromyalgia. You can ask for a pain patch called "Flector" to apply to your lower back. The medication in this patch does not get into your bloodstream so it is not going to affect any other meds that you take. Wherever it is applied is where it works. Another option is a topical pain killer called Ketoprofen which can have Lidocaine and Gabapentin added to it. I use Ketoprofen 20%, Gabapentin 5%, Lidocaine 5% all mixed into one cream. This has to be made by a compound pharmacy. There is probably one in your area. If not, the script can be faxed and they'll mail it out to you. If you decide to ask for this, ask for a larger quantity (120gnz). Otherwise it comes in a tube which is useless when trying to cover larger/several areas. There are a couple of tricks when using Ketoprofen. Never layer it, apply it to clean warm skin. I put it on when I get out of the shower or clean the area with rubbing alcohol first. You can add a layer of saran wrap for NO more than 2 hours to help the Ketoprofen absorb. I find using saran wrap helps alot too. I would bet, based on my own experience that the pain in your hips and legs is at least partially coming from your back. The burning sensation that you are descrbing in your arms is nerve pain. Are you taking Gabapentin or Neurotin for that? I really think seeing a fibro-friendly rheumotologist is the best way to go. It can take a lot of tinkering to get the right combination of medication and doseage to get someone with FMS comfortable. If you are not on an antidepressant, you should be given one. I use a low dose of Cymbalta and it has helped tremendously with pain and my mood swings. Obviously your sleep is still disrupted because of the pain issues. That all by itself is contributing to higher pain levels as your muscles are not getting sufficent rest. Diet is very important with FMS. Stay away from deep fried food, processed lunch meat (nitrates)and diet (pop etc)anything. Any of these items will make your pain level worse. If you need a sweetner for coffee use Stevia which you can find at a good health food store. To help control energy, eat a high protein diet and spread it out into smaller meals throughout the day. You won't have so many crashes especially if you watch your sugar intake. Believe me when I say that I totally understand your frustration and loneliness. The best first step you can take is to get a referral to a rheumotologist and get a second opinion. I hope that my comments are helpful to you. Take care and keep in touch.

 

from-fibro-2-college - December 9

Taleese, I'm new to the group also and so very thankful for this forum. I'm sorry that you've endured so much. How awful the accident must have been for you. I don't experience the burning pain in the elbows or down the arms, but I do deal with other symptons. Lock-jaw in the right jaw (which by the way, if you experience something on one side of the body, you will on the other sooner or later),severe pain in the muscles from my neck down to my knees. I deal with alot of muscle pain in my thighs, lower back, and so on. I've had pain in the bottoms of my feet so bad that it was tearful just to walk. I find that sheer determination is my best defense. Kind of a mind over matter thing I guess. I'm just too darn determined to let this beat me. I'm 43 and getting through college every painful day. Unlike you, I don't have small children at home, but have a beautiful granddaughter that has to wait on "Granna's" good days to stay with her. That's the hardest for me. I have to base my time with her around my pain. She's one yr old and quite a hand full. Believe me, it's not our imaginations making us hurt like we do. The fatigueness you experience is manageable but may require a mild sleeping pill to help that out. I'm learning that plenty of rest at night leads to a better day. Good luck to you and my prayers are with you.

 

Taleese - December 16

Thank you for the warm welcome and all the wonderful information.
I have not gone to a RH doctor as of yet. I go to my GP next month for a physical and blood work to check for Lupus and RA and thyroid. Based on that will be the next move for pain management doctor and an RH doctor.
I have never heard of Flector I will speak to my PM doctor about that. I currently am on Zoloft 100mg a day (this was just uped today) I tried cymbalta and it was sending me to the "dark side" real fast and scared me after two days of being on it I stopped. the Zoloft has helped but I think uping it will be a little better. I take Lyrica for the restless leg, that is 3x a day. She has just started me on celebrex today, 2x a day 200mg. Then I also take methacarbomol as need, it is a muscle relaxer.
I was slipping this past week into a depression funk as i call it and just wanted to sleep and cry. The weather however is so cold 12f and snow and cold winds. I think that contributed as well I had sick kids and was stuck in doors. We have gotten a membership at a gym to help me exercise and have a hot tub to ease my muscle pain.
The wreck was very scarey and traumatizing especially with my babies in the car. I still have a hard time driving by there as do my boys. One of the twins is Autistic(Aspergers) and he talks frequently about it and when we drive by it and making sure anyone and everyone is in and buckeled up before mom even starts the car. But he also has such a hard time not understanding mommys not being able to play like we use to. He always asks, mom when are you going to be better, its been a long time. It breaks my heart sometimes.

 

Taleese - December 16

This forum is great and I have already picked up some new things to try to help ease things.
I usually dont get pain on one side, when it starts it usually starts full force where ever it chooses. I too have had the walking problems at times. Oh and my ankles and knees just ache so bad sometimes.
Way to go with school. I wanted to go back my own self but think I need to get me under control first. The rest will come. My kids keep me going and I too refuse to let this take over my life or shut me down, however there are some real hard days, I won't give in. I know I may never be the old me but I like to think the new me I am getting to will be just as good if not better.

 

Fantod - December 16

Taleese - Just a thought, but you might want to go ahead and make the appointments for the rheumotologist and pain management now. As a new patient, it will take time to get a slot.

You want to see the rheumy first and then the pain management specialist. I would guess that two weeks following your physical should be about right and allow for the bloodwork to come back. Take copies of all the bloodwork to the rheumy or they will order it again for their own records.

I keep a running log of my current meds and any supplements and any allergies on the computer. I have my name, date of birth and the date the list was printed on the sheet. That way you can just hand it over and not spend time trying to remember everything.

If you end up not needing the appointments, you can cancel. Ar least you won't be sitting around waiting to get in if you really need a rheumotologist.

When you see the pain management specialist, take copies of your bloodwork and any recent MRI's etc.

I'm glad we have been helpful to you. I hope you and your family enjoy the upcoming holidays.

 

Taleese - December 17

I actually already see a pain management specialist because of the car accident I was in and the doctors and nerouligist could not pin point why I was in such tremendous pain 7 months later and getting worse.

 

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