My Life with Fibro

Please Help! Fibromyalgia and My Breaking Point

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Fibrofolks, I need your help. Desperately.  But first I ask, that like any good friend, you allow me to vent… a necessary step in identifying just what sort of help I need.

I hate feeling like a fool each time I go to the doctor.  I hate invisible pain from an invisible cause.  I hate being unable to drive without nearly vomiting from pain.  I hate hurting so badly I can’t maintain my composure.  I hate when pain demands attention.  I hate that I can’t go more than an hour without mentioning my pain.  I hate that I’m a wuss with new pain, yet am nearly unfazed by fibromyalgia and arthritis pain.  I hate that walking, standing, sitting, reclining, and sleeping all hurt.  I hate pain that radiates and disturbs my equilibrium.

I hate that I hate things.  But I love that the things I most despise teach me the most-needed lessons.

Apparently I am a slow learner.

Anyway… after struggling with mild to immobilizing spine pain for nearly a month, I am reaching a point we all know too well.  When your body and your mind battle to determine just how much you can endure.  When your mind fears for your sanity while your body punishes your nerves.  When you turn inside and wonder how much longer you can live like this.  When you just need relief.

I leave for vacation on Friday, but the thought of a plane ride has me full of dread.  No doctor has been able to help me, and I just keep living life like normal (mostly).  My chiropractor provided two likely causes after examining my x-rays… but I am still in extreme pain.  Please help me!

Have you suffered from extreme spinal pain?

Mine is centered in the middle of my back (top to bottom) on my spine (and a bit to the right).  It is constant but is made worse with movement.  If I lean forward and rest my elbows on my knees while sitting I feel a bit of relief.  Standing just right feels bearable, as well.  Sitting is a nightmare, but it seems the best way to deal with the extreme dizziness I feel as the pain radiates throughout my body.

I apologize for the mediocre writing and the negative tone.  And I look forward to any advice you may have. I just cannot go on feeling this dreadful.

My action plan for the rest of the week consists of:

  1. Family Doctor follow-up.  Leave with prior chest and spine x-rays.
  2. Appointment with some sort of orthopedic doctor.
  3. A massage.  (It hurts beyond belief to lay on my stomach, but somehow I end up relaxed.)
  4. Continue to be grateful for a job that allows me to get lost in details and forget myself.
  5. Offer my appreciation to the many examples of discipline and strength that motivate and humble me.
  6. ?

What do you recommend I add to this action plan?  I am open to all suggestions.

Thank you!

To those of you who have already shared your advice and experiences, I thank you for your time and support.  I will follow-up with you when I get feeling a bit better.

15 responses to “Please Help! Fibromyalgia and My Breaking Point”

  1. Tamicat

    First of all, a very delicate and heartfelt {{hug}}. =)

    I’ve never experienced that pain *there*. I did used to get that type of pain in my neck a few months ago. It used to come on occasionally – and always brought on a migraine with it. In March the pain came and just would NOT go away.

    My chiropractor referred me to an AMAZING physical therapist. She wasn’t the kind that helps you rehab after an injury. She was the kind that looked at your structure and put your structure back into alignment. She did adjustments, like a chiropractor adjusts, but using the technique that an osteopath uses – using gravity and your body’s muscles to gradually pull your spine back into alignment, rather than the quick pop.

    WOW. Night and day for me. Nothing against my chiropractor. He’s awesome. It’s just that I was at the point where my muscles were so tight that they were pulling back out all the adjustments that he’d just made. By working WITH my muscles to actually make the change, the adjustments held and we were finally able to make progress.

    The pain isn’t totally gone, but at least I don’t want to throw up so often or just go have a good cry all the time. I feel like things are getting better & that someday it WILL be gone.

    Happy to answer any questions – and will definitely be praying for you!

    Reply
  2. Jenn

    Hey K8, I’ve dealt with pain in my back (lower, middle, and upper–just to be fun) and my hip most of my life. Unfortunately it took my doctors 6-7 years to figure out what was/is wrong with me (I have multiple schmorl’s nodes and the actual mechanics of my spine are essentially bad along with 2 bulging discs). Essentially they told me to suck it up and don’t bend from the waist (nice I know). So I went for physical therapy to try and strengthen my back muscles and I’m now trying different pain medications/anti-inflammatorys, and muscle relaxers. The best “non-medical” advice I can offer is to take baths to relax the muscles, try to sit up straight, and don’t do ANY lifting of any kind.

    I hope you feel better for your vacation!!

    I feel terrible do a little bit of “shameless” plugging, but when you get a chance I hope you will check out my blog. I’ve been following your blog for some time now and I’ve been so inspired by you and other fibromites blogging about their life with fibro that I’ve started my own blog. I’d be honored if you’d stop by and check it out. Thanks and hope you’re having a good day =)

    Jenn
    fibrologie.blogspot.com

    Reply
  3. Teia Hassey

    ((Hugs))

    My back and neck are with lots of knife stabbing pains. I have been through every therapy possible. One of my spinal doctors gave me “Lidoderm” patches. It is a Rx but well worth it. On my bad days I put one on my neck and one on my lower back.
    Please read my blog, you are not the only one, and I am trying to find a better way of life too. ((hugs))

    Cheers!

    Reply
  4. Benia

    I want to remind you that you are definitely allowed to vent…and breathe. That means, try to make time to relax.

    I worry that you are planning to take too much action for the week already, especially considering that the procedures you will go through may set you back. Enjoy what you can, whether it’s quiet time outside or getting lost in music or mindless television. Try to have a day where you don’t have to worry about appointments or chores and just BE for a while.

    When I feel terrible, I try to remember that better days are ahead of me, so I can look forward to something positive when I need it most. I hope this is helpful to you. Take care…

    Reply
  5. K8

    Tami: Thank you for suggesting physical therapy. I will look into it.

    Jenn: I am glad you found me and I’ve added your blog to my reader. Welcome to the online fibrofolks community!

    Teia: Hooray! Another blog to read and another powerful example of strength. Thank you for your support.

    Benia: Thank you for being the voice of reality. Last night I followed your advice and took some time to listen to music and relax. My husband was grateful to see me being me.

    Reply
  6. Jim Clements

    K8, In your blog posting I came across the word “remiss” And I’m thinking, “Who uses that word in normal conversation? She has got to be LDS, that’s a “testimony meeting” word. 🙂 Then saw your wedding photo and that clinched it. The Mesa Temple is special to me too. Hope that you are feeling well.
    All the best,
    Jim

    Reply
  7. Barbara

    Kate,
    I appreciate your story. Much of it was so familiar because I too had fibromyalgia for many years. I finally found a way to get rid of it. I still have SOME aches etc, but NOTHIING like I used to have. Fibromyalgia is such a terrible disease!! It effects every aspect of your life. When I look back at those years I can’t imagine how I went on. So much of the time I didn’t want to keep going on!! I imagine you know what I mean by that since you have fibromyalgia too. Only a person with fibromyalgia can understand what it is truly like!!!
    My heart goes out to you and I feel your pain.

    Reply
  8. Jennifer

    If I hear one more time, “Are you sure you don’t have Lyme Disease?” If only it was that simple. The countless and often useless doctor visits are the worst. I got to the point where I did the reverse. Not going to the doctor no matter what was wrong because I was so tired of it. Got severely ill with Pneumonia as a result. Fever and chills happen all the time. How can I tell the difference?

    I have tried a new routine that has reduced the number of “episodes”. I found a physical activity (volleyball) that I really enjoy so I am encouraged to do it often. On a Fibro day (or days) I have strong pain killers so that I still go to volleyball. I only take a tranquilizer for the really bad nights. I also take 5htp everyday. I have gone from problem every other month to only once every four months. The regular physical exercise and sleep are the number one relief options for us. We just have to trick our bodies so those things happen.

    Reply
  9. Cathy

    I feel your fibro pain everyday. The exact spot in my back has had me crying for several days. So, today I went to a pain specialist–he gave me a trigger point injection to the right of my mid spine. That’s what is causing your pain in that area! I felt immediate relief after he finished. He told me to use the TENS unit every day–2 hours on. Check into this. Good luck & God bless!!

    Reply
  10. kt

    Hey..I have fibromyalgia as well. I too am in constant pain and if I am not careful it can invade every thought every day. However, I try to remember that there are ALOT of people in this world who are so much worse off physically than “us”. Our condition is nothing compared to so many who are starving, paraplegic (we can get out of bed if we really want to) blind, deaf, without arms and/or legs, dying of cancer (insert deadly disease here) etc., etc. I know that some days I just get so darn tired of being in pain, but then I remember…I am really not that bad off.

    Reply
  11. sunny

    I too have fibro and have been suffering since 1985. I have just recently begun to have severe pain in my upper spine. Thanks to your blog I now know it is just another part of the same ole fibro. Thank you so much for the info, i was really scared since i had fallen and was afraid i had really injured myself. I have really enjoyed your blog. It is the frst one I have read and never written in one. Thank you again and i will keep up with you. Love and tender hugs, Sunny

    Reply
  12. Lelia

    I have had the pain in my spine a few times when I first learned I had this condition…There is really nothing that I can do to make it better..not lying down not standing up and surely not sitting…It does get to the breaking point when you feel like you just can’t make it anymore and that it will never go away. I would try different things to try to relieve the pain like a hot shower or pain pills, but it is not untill I am able to sleep that it seems like the pain eases up. I have tried the cymbalta and it does work for me but I always seem to stop when I start feeling better thinking that everything is ok…don’t let your mind fool you body or your body fool your mind. You have to gain control of this disease or it will gain control over you. I found that the less stress you are in the less often flare ups occur. I’m not sure if this helps any, but dont feel bad..we are all going thru this togehter…this pain is a pain in the butt…every flare up is not like the last..sometimes it is worse than the last..try this…when you feel like you’re going to loose it, escape to a quiet place, turn off your cellphone and just relax..think of nothing other than getting control over your body. Your mind is stronger than you think. If your mind is telling your body to relax, your boday will relax. I hate doctors, because they always think that my pain is in my head and they try to dope me up on tons of different meds.. I even once been told that I was under alot of stress and need to see a shrink! Just try the peaceful settings at the end of your work week before you get home, let work go so that you can deal with home. It works for me I hope it works for you.

    Reply
  13. nicole

    I hurt so bad right now I can’t even write a comment to explain how bad it is……………

    Reply
  14. Liz O.

    Yes, my entire back is in pain every day, mostly my mid and lower back. I have a 7 yr old, and try to stay active, care for her, cook/clean, and work part time, but it is rare that I have a day free of nausea and pain.

    What I do to try to cope (I too am on the verge of ‘feeling mental’ and ‘disabled’) is to stop whatever it is I’m doing, and drink hot tea, or look over family photos. This slows my brain down and makes me smile. So I get relief for a few minutes, sometimes that’s enough to get me out of that loopy phase. Put on some of your fave music.

    And yes, I also worry about sounding too negative, I usually stay away from my friends when I’m having a bad/negative day. I hate the fact that sometimes the words “sick” and “hurt/pain” come out of my mouth every other minute. It’s depressing, BUT, your friends/family understand. They tell me they just ignore it, and try to have fun when I’m around. We talk about normal things like how the kids are doing, how much laundry needs to be done, how much we’d enjoy having someone else do the cooking and cleaning…how we’d spend a million bucks! lol

    Read a comic book. I like Calvin and Hobbes, although I don’t understand some of the political lines, I still get some good laughs from most of the pages! Scrapbook, hug your husband. Sometimes we need to take a break from all of the appointments, and trying to keep a strict routine. Try just taking a half hour to an hour out of your day to read magazines or do something unphysical…

    I hope my humble/feable suggestions help you. Take care.

    Reply
    1. Kate

      I totally get the bit about talking about it a lot when you’re hurting terribly. It can be like I can’t even think enough not to. Same thing when I have a migraine. It feels like all I can say is, “I’m going to die.” or “I’d like to drill a hole in my head.”

      I too am lucky to have very patient family and friends. What a blessing!

      Reply

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