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Neck pain, etc...
18 Replies
JoniB - November 16

Recently I moved (and with weather change) was down for 2 weeks with such horrible neck pain (like migraine in the neck) that I couldn't hold my head up for more than 1/2 hr at a time. My head felt like it weighed more than 200 lbs. The pain became untolerable and brought me to tears. I was in bed, flat on my back with a heating pad, afraid to move. The Dr. gave me a soft neck collar and Percocet in addition to all the rest of my meds. Then I caught a sinus infection and that made the fibro worse (and more neck pain) so now I am on an antibiotic. I try to do stretches with my neck and arms every day. Also beg my kids to rub it & it pops/cracks. My upper back/neck (trapezoid muscle) is the worst but can radiate around my ribs and down my arms, jaw pain, headaches, ibs, etc. The list seems endless. After all the meds I take I still feel like crap every day. It is so difficult to try and take care of the house and 2 teenagers. I do the important things and the rest has to wait until I can chip away at it. I have so much to do that I am overwhelmed. Let alone worry about future bills. The chronic fatigue alone is debilitating. I quit work Dec 2004 and have applied for SSD. I have been denied twice, had hearing by video conference with administrative law judge (last June) and am awaiting 2nd hearing because they did not allow enough time at 1st hearing. I am so frustrated. I live in a very small town and don't get out much. I have done counseling and am on meds for depression and still feel so defeated. I have had fibro for 10 yrs with the last 3 being so difficult. I do realize there is much worse out there like cancer or MS and hate to complain but this is so bad to me. Any uplifting words, advice, wisdom or just relating to me on this would be appreciated.

 

islandguy - November 16

Hi JoniB: - It sounds like you have had your plate full and overflowing for quite some time. When you are feeling like a truck ran over you everyday that you wake up it is hard to get up and get going. Having flu like symptoms everyday--is not much fun. My doctor cautions against Percocet because of the tylenol in it and as we all know tylenol can be very hard on the liver after extended use. You can get a Percocet precription under another name (of which I can't remember right now) without the tylenol in it and it works just as well and less dangerous to the liver. Maybe check with your dr. on that if you have any concerns. --- Frustrating fighting for SSD as finances for the Chronic's that have had to leave work are always difficult and usually need some fine skating techniques to get through the month with the money available. Keep fighting and stay positive (as hard as that may be sometimes) and I am sure the Judge will hear your cries for help at your next hearing. Good news: -- sounds like your teenage children are there to help. That sounds great and a great support system. - And that's not all - you are with a group that understands and is supportive. - I hope that this message finds you having a "great day". Gentle hugs to you to help comfort your day.....

 

lisa1 - November 16

JoniB-Hello. Hope your day is going better. I read something about NORCO. It is supposed to have less tylenol in it, but I will double check with my pain doctor on Monday and see if I can get you an answer. As far as your financial situation, check out your community health centers or contact your state and local health departments. There should be some medical assistance available to you to help you through. I think counseling is a great idea as well. But if that is not possible you can always find someone here to talk to. Remember, you body is going through alot and it does affect your mental attitude. Just try to focus on the good things, however small they may seem at the time. It does help. We have to get our happiness where we can. Better days are coming. Please continue to write and let us know how you are making out. We are all in this together...

 

Gabbie - November 16

Hi JoniB. You sound like you are having a really tough time. Experiencing so much pain without let-up can be so frustrating but I encourage you to try to keep going as best that you can. Although it is not easy, I think keeping a positive outlook is so important to living with fibro. Sometimes allowing the fibro to get the best of you brings on more symptoms so if you can think about something good in your life, perhaps your children, it may help you through those especially difficult days. I also encourage you to stay with this forum because the support system that is here is unbelieveable and so very helpful. I visit this site almost everyday and find it incredibly uplifting. I wish you well and hopefully some happier and healthier days in the future.

 

shonlaw - November 17

Hello JoniB- first of all let me give you a big soft hug. Then i would like to thank you because even though i have had fm for at least 7 years, i have never felt the neck pain you described until 2 months ago after the delivery of my second child. up until then i never thought that my symptoms coulld get worst but they did. and the fatigue is just ........WOW!!! Sounds like you looked inside my brain and transcribed my thoughts when you wrote your post. today was a bad day for me but i am thankful anyway because it is not anything fatal. i know that you get down sometimes but remember that a positive attitude is important. you are not alone. good luck.

 

islandguy - November 17

I found the other name of Percocet without the tylenol.....it is - - Chemical Name: OXYCODONE (ox-i-KOE-done) -

Common uses ----
This medicine is a narcotic analgesic used to treat patients who have moderate to severe pain that requires continuous treatment and is expected to last for an extended period of time. This medicine is not for use as short-term pain treatment.
For your information should you wish to discuss with your pain doctor.


 

JoniB - November 17

Hi everyone and thank you for your posts. My Dr. has done blood work and everything is fine including the liver. She doesn't seem to worry about the Tylenol. In fact I take Tramadol with it 4 times a day (equals an Ultracet). The Percocet was just prescribed for short term use. The rest of the meds I take are: Cymbalta & Wellbutrin (depression), Baclofen (muscle relaxer), Alprazolam (anxiety), Diclyclomine (as needed IBS cramping), either Equate PM or Lunesta (for sleep), and rotate for pain as it seems to lose effectiveness after a bit, Diclofenac Sodium (Voltaren), Naproxen, Ibuprofen and Fiornal for migraines. I even have some Tylenol #3. I know this seems like a lot of meds! My three Dr.'s know about all of them. If I don't take them I am worse off. I wouldn't even think of going through all this "med free!" I have low pain tolerance and high med tolerance. The really bad flare-ups nothing seems to help though! I have tried so many different "cocktails" of medicine over the years. I also have mild asthma and take meds for that. Thank God I do have help for the medication and Dr. visits! I am glad fibro isn't fatal but I really don't want to live with this much pain/fatigue for 10-20 yrs more (I am 43 now.) I pray for advancement with the technology to better treat or cure this for ALL of our sakes! My Dr. has suggested going to a Pain Clinic which I am seriously thinking about doing. Thank you for your support!

 

Gabbie - November 17

Hi JoniB. You last post listed all the meds you are taking and I find the amount that is being prescribed for you a little frightening. I sometimes question anti-depressants because they can have an adverse effect on some people and one of the side effects is, would you believe, depression. There can also be anxiety, insomnia and fatique, all of which you are being treated for with other meds. I am really concerned for you that 3 doctors are all prescribing such a variety of medication for you. Please talk to your doctors again and research the possibility of side effects and also drugs that may interact with one another. The combination of the meds that you are taking may be "fighting" one another. Keep us informed on how you are doing.

 

Fantod - November 18

Hi JoniB - When I read your post it made me wonder if you have ever been elvaluated by a dentist for TMD/TMJ. It can cause the unbearable neck and head pain that you are describing. I think think everyone here has moments of overwhelming defeat in the face of FMS and all the problems it can cause. You are certainly not alone. Hang tough and let us know how you are doing.

 

JoniB - November 19

Thank you for your replies. I am feeling better today and NEED to get some work done around here as I am having company come on Wednesday. I asked my kids if they will please help me after school today. I should probably try to find a new Dentist because the one I have now does not seem very caring. I have told him about the grinding and TMJ several times before. The only thing he did was to recommend a mouth guard at night. As far as the anti-depressants, they do help. Before I had the right ones I had crying spells so often and was even more bedridden. The holidays will be tough on all of us fibromites (as I once heard.) Anything that we can do to simplify it will help. Examples: gift bags instead of wrapping, don't roll out & cut sugar cookies make easier ones, have cookie exchange with friends. I am downsizing and not decorating as much & going to donate extra Christmas items. I've cut my card giving in half and send some people an e-mail letter with pics for Christmas. Does anyone want to start a thread about this to get other's input for simplifying the holidays? Just a thought. Well I'd better go for now...Joni

 

linda brown - November 19

i hear you all to well. this fibro is terrible. and i don't think the docs know a lot about it as to what to do. all my doc gave me for pain was lidoderm patches. but like you said, the neck pain is so awful it can bring you to tears. this is a great place to vent or anything else because we understand, goo luck

 

Fantod - November 20

joniB - See if you can find a Pankey Institute dentist in your area - www.pankeydentist.org
These dentists are highly trained professionals with a lot more education than the average dentist. You should be able to find one that has some experience with TMJ/TMD that can help you or will refer you to someone else. I am a 9 (10 being the worst) in the TMJ department. My Pankey dentist has made a huge difference in my pain level using a properly calibrated splint and making sure any fillings or crowns are not interfering with my bite. I can tell if anything is off by so much as a hair. I used to feel like I had half inch dowels being shoved into my ears at the same time. Between that and chronic neck pain I was way past miserable. Your head acts like a gyroscope for your entire body. If it is out of sync everything else follows. I hope you'll consider my suggestion and definitely go to a pain specialist. I hope this message finds you in a better place.

 

nancyan - February 27

Joni,

I saw that you are from Fort Dodge. I would like to know which doctors you have been too. I am not having much luck with mine. Not sure if this is the correct way to contact you but I just joined and haven't found any other way to contact you. Thank you, Nancy

 

nancyan - February 27

Joni, I see you are from the Fort Dodge area. I would like to talk with you about your Doctors etc...... I am not having much luck with mine.

Nancy

 

JoniB - February 27

Hello Nancy. You can reach me at gr8 joni @ yahoo dot com (no spaces)

 

JoniB - February 27

Hey, I had neck x-rays taken about 1-1/2 weeks ago (last neck x-rays were in 1997.) My Dr. found a pinched nerve and some arthritis. This may be the cause of a lot of my upper trunk pain, not just the fibro. I have an MRI scheduled March 5th. The x-rays & MRI are a requirement before going to the pain management clinic. Also, I started water therapy and am doing it about once a week.

 

JoniB - March 7

Hello. I had the MRI yesterday. The nurse called me today and told me I have a herniated disk and arthritic spurs in my C-5 & C-6. This is affecting the nerves in my upper trunk. I had been blaming all my pain on the fibro and thought I just had to live with severe pain. I don't know why the Dr's didn't catch it sooner. Now I will go to a pain management clinic & they will decide what to do from here. Surgery may be an option.

 

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