How do you cope with this pain?

Discussion in 'Fibromyalgia Main Forum' started by Sheila1366, Sep 20, 2005.

  1. Sheila1366

    Sheila1366 New Member

    I am new to this.And I hurt so much now I don't know how I able to even type.I am just desperate to be intouch with others like me.I hurt so much,never hurt like this in my life.I am forgeting where I am at when I drive,I can't get words out,there is so much going on.Can anyone just send me some advice or support.The dr. has me on carbatrol 100mg. 3 times a day and it is as if I am taking nothing.I just don't know know much of this I can take without falling apart.
  2. Bruin63

    Bruin63 Member

    Norco 10mg/325 for Pain, it's easier on the liver, and it's also in a generic form that I can take.
    I have Spinal Stenosis, and Degenerative Disc Disease, and I also have OA.
    FMS is treated, when I treat thoes conditions. As they reduce my Pain load.

    I also take Soma, for the Muscles, and my IBS and Mastoiditis, which helps with my Chronic Myofasical Pain trigger point called the SCM's.
    I have constant right ear problems from this, like pain and ears plugging up.

    I take Vistril, due to the Histamine problems that a lot of us can have with these conditions. It also inhances my Pain Meds, so I can stay at a lower dose.

    I take Xanax, when the World crahses in. and I know I don't have to drive anywhere. ;o)

    Provintil, rescue Inhaler, for when I have the Shortness of Breathe that comes with my Combo of FMS/CMPD.

    I haven't found a Sleeping Pill that can keep me asleep, unless I am flaring, (having worse pain than normal) I can get to sleep, with the use of the above Med.s

    I went through a lot of Trial Meds. to find what would work for me.
    My biggest problem is I am allergic to the RED Dye's, like F#45etc.
    So my Pharmacist has to find either Generic or Brand name that comes in WHITE, makes my Life so much more Fun, grr!

    I hope you find a Treatment that will help you get some Pain Relief, but I would say, Try another Doctor.
    I sat in a chair not moving for years, untill I was able to have the above Meds., I have been on them for 5 years, and longer on a few others.
    Without them, I would not be able to do my Housework, or look after the GK's when the weekend rolls around. ;o)

  3. ajp

    ajp New Member

    Hi Shelia,
    I so understand about the pain and I am sorry you are feeling this way. I honestly have days where I feel I can't go on. I tell my kids...who are grown up.. that at least when I am gone..they will know my pain is finally gone.I have to try to do one day at a time.I forget what I am saying in the middle of a sentence ,can't remember the right words, lose things, I lost a whole can of coffee for a week, could NOT find it...later found in the did it get there? Sometimes my hands hurt so much I can't turn the ignition in the car.
    What is Carbatrol? Ask your DR. about is a new antidepressant that also helps with pain. I have been on it for a few months and it has helped some. I still have bad days ....but have a few rare days of feeling well.I also take my pain med every 5-6 hours.
    Last night I was so discouraged with everything. I had a filling done and my mouth hurt, have a two day migraine going on and my knees(my new area of pain)are aching and of course my hands, always my hands hurt.
    Hang in there... we are here to help you. Brighter days are coming. Take care.
  4. Suzan

    Suzan New Member

    I am sorry you are dealing with this. I do no know the drug you are on, but it isn't one that would usually be first described for fibromyalgia in my experience. If the drug isn't helping you...let your doc know. If he offers no help...go see someone else. You cannot cure this..but you can do things that will make life more comfortable for you!
  5. jana15

    jana15 New Member

    Hi there Sheila,

    It's so good you've found this site, I too have FM/CFS and although there isn't a cure as such, it does get easier as you learn to understand your body and the nature of the illness. Everyone's symptoms are different yet very similar and I think I can safely say most of us have been where you are right now.

    Firstly Take a deep breath and try to relax.

    I know that probably sounds very annoying given you are in so much pain and probably have some other frightening things happening to your body and mind. But this is very important as you have alot ahead of you!

    Secondly Prepare yourself

    You are going to have to become a very strong advocate for yourself! I do this by visualising my body as a sick child and I am responsible for that child so of course I am going to go in and bat for her.

    If you are really lucky, you will be able to quickly tap into other services and facities who will support and assist you in getting the help and medical attention you need.

    Thirdly Don't be afraid to be selfish and pushy

    This condition is quite invisible in many ways and most of us have been raised to believe it's bad manners to complain , be demanding or pushy, but that is exactly what you need to do and to keep on doing until you have the right mix of medical (ie a dr or drs you can work with as a team) and ancillary assistance that works for you (ancillary assistance can include a range things - for me it includes a counsellor, a couple of people who are prepared to drive me places, the local pharmacist who is constantly researching things for me etc.) your lists right now may be different to mine but once you have your support network in place, managing the illness becomes much easier.

    Fourthly Start spoiling yourself

    Freely grant yourself whatever it takes to make you feel better physically and emotionally.

    I hope this helps (crikey I hope it at least makes sense - I have dreadful brain fog tonight)

    Stay in touch Sheila, I find this site a Godsend - I get so much great advice here and have found a font of wisdom in the posts and in the chat room. They people here are very generous with their advice and time and I'm sure you'll find it really helpful too!

    Cheers Jana
  6. Drmom

    Drmom New Member

    Carbamazepine, and is a drug that affects the nerves and brain. It works by decreasing impulses in nerves that cause seizures and pain. Many seizure drugs are used in FMS.
  7. Drmom

    Drmom New Member

    Hydrocodone (related to codeine)and is in a class of drugs called narcotic analgesics. It relieves pain.
    BTW, I also have very fragile asthma. Went on the vent for 12 hours once when lungs got tired. Not a pretty thing to see or do. I deal with my pain with flexeril and Vicodin so far.
  8. vbrown

    vbrown New Member

    Cymbalta has worked great for me. I have a 1-1/2 inch memory foam mattress topper, also take Elavil. The Elavil seems to put weight on me but I have been walking 4 to 6 days a week for sometimes as little as ten minutes. Makes me feel a lot better
  9. Sheila1366

    Sheila1366 New Member

    I called Rd and she said i can take flexeril to control muscle spasms.I asked the nurse how long does this go on.She said that we need to get my body to relax,get good sleep and start exercising.And I need to fight through this.She is very sweet so is my Rd. which is a female.But I am afraid of taking so much meds. that I can't drive but I am also afraid that this pain is going to get worse.I am just so scared.I have had my prozac increased to 80mg. in the morning.It has helped a little,I can't imagine the depressed state I would be in if my psych. didn't increase it.She is very sweet too,always hugs me every time I come and hugs me when I leave.She is very concerned about getting the fibro under control.
    But it costs money to see her and I can't afford it,I am glad I have this place to come to.
    Thanks so have no idea how much your posts have helped me.
  10. Sheila1366

    Sheila1366 New Member

    All this time I thought I was taking carbatrol.I even called the pharmacist once I realized this was a seizure med.Well I am on the generic for ultram....Carbatrol is my daughters med. She has seizures.
    I have lost my mind.
  11. matthewson

    matthewson New Member

    I understand from your last repy that you are taking Ultram? I take tramadol which is the ultram without the acetaminophen. I find that it works better if I take neurontin with it. Either one alone does not seem to work as well as both together.

    I also drink tart cherry juice which is a natural anti-inflammatory. Those three together seem to help the most with my pain.

    Hoping you can get some pain-free days! Sally
  12. tngirl

    tngirl New Member

    I have taken ultracet which is ultram mixed with tylenol.

    I switched to ultram (not mixed with tylenol). There is a generic for ultram, it is tramadol.

    I take Lortab instead of ultram if my pain is really terrible.

    I also take a muscle relaxer, either Skelaxin or Robaxin.
    Sheila can you take any muscle relaxers at all?

    I also take cymbalta, been on it a month and it has decreased my pain.

    Once I had a headache that go increasingly worse over 5 days. The doctor have me a shot of toradol, stronger Lortab and skelaxin. I think the shot helped break the pain cycle.

    I hope you get some relief soon. You can also mix tylenol with your ultram to boost it.

    Do you use heat or ice?


    Hey all. Hey Sheila. I'm new to this site too, although a long time FM patient. I take Flexeril at night, don't take it in the day cause I can't stand to be more of a zombie during the day. It's been the best thing I've taken. Topomax for the migraines(seizure med sometimes used for migraines and FM), and a boatload of stuff for allergies and asthma. This is the first I heard of the asthma being related to FM. For over a year I've been denied allergy shots because I only breath at 60%. Anyone have any info on a possible relationship with the FM?

    Also, having had this illness for the last 13 years, I've been prescribed all kinds of drugs that did not make any difference at all. EXCEPT I developed acid reflux and a very weak, constantly nauseous stomach after a couple years. Now it seems that may be just another symptom of FM! Anyway, after the stomach problems, I refused to take any drugs ('cept the allergy/asthma) for a while and just tried not to scream at people when the pain got real bad. I finally agreed to take Flexeril since it had no bad side effects, and no bad long term side effects. A few years ago I had no choice but to try something for the migraines - they were some killer migraines, so I went on Topomax.

    What I think is important to say about the drugs, is that, in my experience, it's unlikely that they are going to completely take away the pain. They just help dull it some. The best way I've treated myself is to distract myself as much as possible from the pain - good book, good tv show/dvd, good company. While it has been extremely hard to keep up with, I volunteered to meet with local kids and coach them in various performing arts. I had older kids/teens with some performing arts experience be the 'bodies' and have been able to produce a show with the kids each year. Show time is pretty stressfull, but the rest of the time is the best fun. Every day I'm with the kids I'm laughing which is definitely the best medicine.

    Another thing you must have is a good doctor. I mean a doctor who really knows about FM, really LISTENS to your complaints, and someone who gives you the sense that they don't think you're a hypochondriac, nuisance, etc.

    Sheila, the best thing I can say for you to do right now is... take a deep breath. First, remember you're not alone. There are alot of people out there who have gone through this, and are going through it right now. If you haven't gotten any relief from your meds, try to distract yourself - a nice hot bath (might feel good too), a very gentle massage (again might feel good too), a really good, especially if its funny movie, a great book (have you read the Stephanie Plum books by Janet Evanovich?), or some equally good treat for yourself. If none of these sound relaxing enough, pull out the big guns - chocolate!

    Good luck and keep communicating, believe it or not, its a big help.

  14. Sheila1366

    Sheila1366 New Member

    I have learned so much from all of your posts.

    I do use a heating pad,and if I am perfectly still and took pain meds,I am at a point I can relax and not be so tense which I know doesn't help with the pain.I was really on the go yesterday,felt clearer in the mind,and pain wasn't killing me.So I guess we will soon see if I over did it.Right now my head is killing me,I have my usual pains but I also keep getting these sores on my tongue.Probably from the constant dry mouth,I am drinking alot of stuff anything cold.

    I had a crazy dream last night.I have like Stephen King kinda of dreams.But anyway,I dreamed that me and Andie McDowwell were fighting with another woman with wooden bats.We were beating the crap out of each other.Maybe that is why I hurt so much,I am getting beaten up in my dreams.

    I am so glad I have so many of you helping me.You have been an inspiration to me.

  15. Sheila1366

    Sheila1366 New Member

    I too have stomach problems.I have gastrtis,that is inflamation of the stomach lining.I need to stay away for any meds. like motrin or aspirin.I take protonix to control the flares but I am getting sick on my stomach alot.Like you said thought another FM thing.


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