FMS pain getting unbearable

Discussion in 'Fibromyalgia Main Forum' started by kaebear, Oct 12, 2005.

  1. kaebear

    kaebear New Member

    My FMS pain is getting very unbearable. I have had it for more than 10 years and have coped thus far. Each "flair-up" is worse than the last. The Dr.'s around here don't care and think I am crazy. The pain has been so bad the last few weeks that I can't sit, stand, or lay without tears streaming down my face. My laundry is piling up and my kitchen is a disaster. My husband helps as much as he can, but is getting frustrated. Does anyone have pain relief suggestions? Or have you been using a drug thearopy that is working that I can talk to a Dr. about?

    Yesterday the Dr. suggested that she was tired of seeing me. I don't go unless I am really bad off, but they never have answers for me.

    Thanks for listening!
  2. springshower

    springshower New Member

    Hi Bear......I know how you feel with the pain so severe.....Are you seeing a rhumotologist?? sometimes a Primary Physician doesn't understand Fibro or CF......I take pain meds. when the pain is severe,but I also use moist heat,& I take either hot showers or baths.....The hot water seems to help the pain & stiffness....I use the rice bags heated in the microwave frequently to relieve the pain....I take xanax & many supplements for pain & fatigue...Supplements:Colostrum,Malic acid/magnesium,spirulina,Multi -Vit.COQ-10,Vit.C & E,also take a calcium/magnesium at bedtime to relax the nerves & muscles.....These things have helped me to be able to function in a half-way decent manner....Maybe you will need to change Dr.s,to find someone who will work with you to find a protocol that will help....Good luck,Hugs,Springshower
  3. lauralea443

    lauralea443 New Member

    I wish i could wave my magic wand for you. Please find a Dr. who will listen to you. I know it's hard but they are out there.

    No one deserves to live you the type of pain you are feeling, call you insurance and ask them to send you to a pain management center because your P.D. is not doing anything for you.

    Blessings
    Laura
  4. JLH

    JLH New Member

    Have you tried Cymbalta and Neurotin? I take them both and they really made a difference on my fibro pain level. Also, the muscle relaxer Zanaflex at bedtime has greatly helped me.

    I would ask your doc to refer you to a pain management doctor or clinic if they do not want to treat your pain.

    I just read about something new that I was going to post about to see if anyone has tried it yet .... here is the info on it:


    NEURAGEN® PN Receives FDA Approval for Pain Relief
    (info from ProHealthNetwork.com)

    09-20-2005

    HALIFAX, Nova Scotia, Canada (September 7, 2005) – Origin BioMedicinals Inc. announced today that it has received US FDA registration for its pain relief product NEURAGEN® PN. NEURAGEN® PN is a homeopathic blend of its popular Canadian product – NEURAGEN® RL. NEURAGEN® PN consists of a proprietary blend of botanical essential oil compounds, which was developed by two large US chronic pain centers in the early 1990’s.
    Origin BioMedicinals’ product is used today by health practitioners for the treatment of diabetic peripheral neuropathy, post-shingles pain, fibromyalgia, spinal compression pain and other chronic nerve pain. NEURAGEN® is a topical oil that can be used only as needed for these painful conditions, providing greater ease of use and less side effects than prescription drugs. NEURAGEN® PN now contains St. John’s Wort (Hypericum) as a homeopathic ingredient for added effectiveness.

    Two previous trials were conducted for NEURAGEN®. The first trial was for diabetic peripheral neuropathy, where 70% of 29 patients noted improvement in pain, usually within minutes of applying NEURAGEN® topically. Of these, most patients noted a remarkable 50-100% improvement in pain. Efficacy was measured by reduction in pain intensity over the first six hours.

    This rate of efficacy is comparable or better than the prescribed pharmaceutical drugs for neuropathic pain, but without any side effects. Reported quality of life benefits during the study also included improved joint flexibility, decreased cramping and improved balance, as well as improvement in sleep, work ability, social life, energy and less depression. A second multi-center trial for post-shingles pain, similar results were reported where 68% of 30 patients experienced substantial pain relief ranging from 2-10 hours, and occurring within 5-15 minutes.

    For more information, click here: https://prohealth.com/Shop/product.cfm/product__code/N0296
  5. blondie45

    blondie45 New Member

    Have you tried Ultram or tramadol? It is the only thing that gives me enough relief throughout the day to get my daily household chores down and work some of the day.
  6. Jana1

    Jana1 New Member

    Please find someone to perscribe this for you and see if you get better. Maybe you could try the B complex vitamins. See Chocolat's post.

    I don't see that you have a profile, and don't know where you are. I live way off the beaten path in Wyoming but have found good sympathetic doctors. I know you will too...keep on looking..don't give in..hugs, Jana
  7. Tigger57

    Tigger57 New Member

    Yeah, and they say it's not progressive. Right! I don't think so. I have found that it has progressed in me.

    I'm on the fentenyl patch and it seems to help with the pain. I'm having trouble with the fatigue. My doctor has me on a run of prednisone right now and it has made me feel better. We've been having awful weather and I figured my pain and fatigued should be through the roof right about now, but it doesn't seem to be. I'm not great, but I can say that I'm o.k.

    Tigger
  8. LollieBoo

    LollieBoo New Member

    I was dx, and reassured that it is at least not progressive or degenerative.... !

    I have continued to gain new and worse symptoms, longer, more intense flares, and shorter periods between (sometimes it feels like Flare-on-top-of-flare!)...

    Last night I read a book that said that FM usually continues to progress in individuals, unless the ONSET was post-menopause. Hmmmm.

    Lollie
  9. fivesue

    fivesue New Member

    I physically hurt more, as I replied in the other post, but my depression meds aren't doing their jobs, either, or can I sleep. So, my psychiatrist gave me a booster to try this next week.

    I just don't know, but I see so many here right now in flares, feeling worse than ever, and I wonder if it's the change of seasons? Toxins? But, we are all over the world here on this board.

    I'm hoping my depression will lift so I can think more clearly and have more energy to deal with doctors and pain and get some relief. If this new stuff doesn't work, I am going to try Cymbalta.

    I have been reading on depression, and this would fit with any disease, that no one treatment is right for all...no one med, dose, etc. It's just wading in and experimenting with different meds, subtracting, adding, etc.

    So, just think how FM is...there really isn't any normal treatment and as the cause is so illusive, think of all the things that can be tried. Boggles my mind.

    But, doctors must try something. Bear, they need to listen to you and help you out no matter what you say they think. I do hope you will find relief soon...and all the rest of us, that's my wish, too.

    Sue
  10. Ifoundrelief

    Ifoundrelief New Member

    I hate to hear about your pain some days I could hardly go until I started taking mangosteen juice since last Oct 04 I have taken this 2oz. three times a day and have felt so much better I don't hurt like I did and I sleep so much better almost all night I hopes this helps
    from ifoundrelief
  11. kaebear

    kaebear New Member

    Thank you all for your caring replys! There is only one Rhumotologist in my area and he hasn't been helpful to me or my friend. My husband looked today for one in surrounding areas so maybe there is hope.

    I know the weather has a lot to do with how I am feeling today. It is rainy and I always hurt when it rains, but I have been this way since mid-August. I will try some of your suggestions that I haven't yet tried and I will find a Dr. who cares!

    Thank you all so much, again for giving me something to hope for. I will keep watching and communicating and maybe things will get better.

    Kaebear
  12. orachel

    orachel New Member

    I've only been sick about 4 mos.....4 of the most wretched mos I could even imagine (except for discovering all of you and great support and friendshipss!). My pain has been in 7-9 range, while at rest with a ton of 10 pain days thrown in. Lots of teeth gritting and rocking and moaning, with the tears streaming down cheeks. And yeppers....my house was a flippin' disaster area, which made me soooo irritated but too sick to do anything about it! LOL

    Last few days (2-3) have been a little better for me. If I have a 6 pain scale day I'm thanking the Lord....have never had a few 6 days in a row like this. Wonderful.

    Ultram (suggested by blondie, I think?)...I'm on 400 mg max dose per day and it does nothing for me...but I know many people have had great results with it.

    Clearly, I need some narcotic pain relief just to get a bit of relief for the HORRIFIC pain days, but so far no dice with any of my docs.

    So....I've taken to trying any cheap, easy "cure" that I hear about. Just got back from natural foods store (right next to my pain mgmt phd, so I MADE myself go in even though I was beat and throbbing). I got a small bottle of EMU OIL....I've read great things abt it, and it was $5....worth it to me to try it. So far, seems to be working a bit, but just put it on with heating pad for 1st time...prob too early to tell.

    I'm also going to try castor oil wraps...one member here said her 10 yr fm pain was virtually GONE due to castor oil poultices and 2 hrs on heating pad, plus lots of fish oil capsules, and she was also using mangosteen (I haven't bought it yet...pretty pricey). But I did get a 16 oz bottle of castor oil and the organic wool used to massage it in....those were about $10 together...again, worth a try. Apparently there have been MANY natural healers throughout the world who have been telling about healing properties of castor oil for decades...I just never knew about it!

    And finally...I found something at drug store that works, but you will smell like a cross between a giant peppermint and a high school locker room! LOL...it's THERAGESIC topical analgesic...maximum strength. Kind of gives that icy hot tingle....but I'm the most skin sensitive person on earth (can literally barely WEAR clothes!) and for some reason, this effect doesn't bother me at all. It really helps if you rub it into areas bothering you a few times daily...plus, you can wash off the smell and still have the relief.

    I hope some of this gave you some ideas. Also, I've recently added a magnesium/malic acid compound to my supplement list....almost all of us are DRASTICALLY lacking magnesium....if you're not taking it, try it! And I take some fish oil capsules as well...again, many get almost immediate relief from these things. Didn't work for me like that, but hey...any improvement is good, even if its down the road, right? Also, recently read abt b1, b2, b6, b12 lozenges...apparently the VAST majority of us are missing these things also.

    Finally....and I found this really helpful. Do a search for "bath" or "peroxide" and you'll come up with a HUGE list of bath recipes. I tried only hot bath with 2 bottles of hydrogen peroxide (2 full bottles...only 38 cents each at biglots) and about 3 cups of epsom salts. Plus, I added a bit of my organic dr bronner's lavender soap....

    That was amazing. Almost immediate reduction in pain, and REALLY makes me tired and relaxed.....fantastic is the only way to put it. Doesn't seem to last that long, but its great right before bed. I often do it right before hubby gets home from work so he sees me some way than at my worst pain levels of the day....

    These are cheap, easy healers that help many people almost immediately..I'm hoping you're one of them!

    Here's offering you some blessings for relief,
    I'm so sorry its this bad...if I had to pick one to do right away, do the hydrogen peroxide /epsom salt bath....cheapest and your hubby can get ingredients at any store. You could be less than an hour away from a bit of relief! Oh, and I HIGHLY SUGGEST one of those little bath pillows so you can really lean back and relax in the bath...longer you're in it, better it works.

    Hugs!
    Rachel
  13. CarolK

    CarolK New Member

    You should read the post from today titled..."AMAZING RESULTS"...posted by Chocolat!!!!! You sound just like "Chocolat" and might just find some relief in the B-complex she tried.

    This just might be the help you need... it is about a vit.B deficiency... read all the responses and see if taking some extra Vit. B will help with your pain.

    Also it addresses depression and that feeling of hopelessness too! Perhaps adding a B-complex to your daily routine might just be the thing to turn you around. It sounds like it was an AMAZING DISCOVERY for Chocolat!!

    Check it out! I think I will go to my local vitamin shop tomorrow and get some myself!! Blessings to you Bear... CarolK
    [This Message was Edited on 10/12/2005]
  14. fahan

    fahan New Member

    I'm also so sorry to hear of your awful pain! There's

    alot of great stuff on here. When you are able try writing a food/ pain journal of everything you put in

    you and the time and scale ( 1-10) of pain. What the
    people on this board has really helped me come

    "out of bed" you could say. carbonated drinks for instance put my back in much pain.

    From what I've learned most all of us have food intolerences and just afew months keeping a journal

    helps. I really feel for you and I will pray
    that your pain goes away!

    Prayers for you, fahan
  15. cjsmommy

    cjsmommy New Member

    I'm sorry that you're having such a rough time. It doesn't help when you aren't able to communicate effictively with your dr. You may need to find a different dr..one that will actually listen and believe you when you say how much you hurt. I've found for myself that a multivitamin and additional folic acid every day in addition to the Klonopin and Nortriptylene that I take are very beneficial. The Nortriptylene doesn't remove all the pain but it makes it bearable. Stretching helps TONS. I'm down on the floor stretching several times during the day when I really hurt, like today for instance. The only other thing that I find helpful is pacing myself. If I over do it then I pay for two or three days. I hope you can find something to help you soon.
  16. kaebear

    kaebear New Member

    Thanks you all again for the messages. I wrote them all down. I made an appointment this morning with a different Dr. a couple of hours from me. It is Oct. 31. I will take all of these suggestions with me along with a pain journal.

    My Grandma has to get B-12 shots and I have researched that, but was to scarred to try them since if you overdo it they can cause heart problems.

    I am hoping that this new Dr. will be good and will listen I spoke to the receptionist about needing to be listened to. She said that this Dr. specializes in FMS and will do his best to get my pain under control.

    I Thank the Lord for you all! Why didn't I look for you sooner?! :)