Sunday, September 4, 2011


My Achilles Tendons have "yelled" at me all day. What those who do not have Fibromyalgia don't understand, is that because of Fibromyalgia, my pain is magnified. My abundance of Substance P seems to be working overtime. My next appointment with the Physical Therapist is Tuesday afternoon.

Dr. Emily put me on Tramodol 3x a day. I have not noticed a difference. I may need a higher dose.

We have had a quiet Sunday. I have done laundry, dishes and cooked meals. I did a lot of reorganization yesterday and cleaning. I feel good about what I accomplished.

We have nearly 160 sites in the park to clean tomorrow. Needless to say, not much will be accomplished at home. Dwain cooked a beef roast Saturday in the dutch oven. We have enough left over for hot beef sandwiches for dinner tomorrow.

You can .... smile in the face of pain.

You can .... forgive those who cannot understand Chronic Illness.
For we understand it is unseen.

24 comments:

  1. I was diagnosed with Fibromyalgia about 3 years ago. I have tried many types of medications from narcotics to anti-seizure medications to control the pain. I have been on Cymbalta for the last 4 months. Cymbalta works wonderful and I am able to live a pain free life.

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  2. Thank you for this great article.
    I really can take benefit from it.

    I have bookmarked this and i also am looking forward to reading new articles.

    Keep up the great job!
    Thanks!!!

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  3. Hi I was diagnosed 3 years ago with CFS and fibromyalgia. This was after having glandular fever. I was in a wheelchair for 6 months and unable to work for considerably longer. When I did go back to work I couldn't even remember how to get home! From not being able to walk up the stairs without clinging to a banister and one foot at a time, two days after my first session I walked upstairs unaided and normally. I still suffer from CFS and probably always will but it is managed now. My partner knows when I do too much and I slow down and recover very quickly now. I do suffer pain occasionally, but I lead a 99% normal life now. I cannot stress enough how treatments helped. I was told by the doctors that heat would help with pain relief. It did nothing at all. However a cold wet towel draped over my body made the pain reduce sufficiently for me to cope with it. I really do wish you all well and would encourage the use of alternative medicines as I feel conventional medicine does not really recognize these illnesses and we fall through the system.

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  4. Hello there Debbie :)

    I've been on Cymbalta, Lyrica and Tramadol. It has worked pretty well for me but we are considering upping the dose for Cymbalta and Lyrica. I've been taking Tylenol3 like candy for break through pain and that's gotta stop. A pleasure meeting you and finding your blog! You can see mine at www.livingwithfibromyalgia.ca :)

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  5. It's so true. I filled in as a casual worker today and no one knew I was in agony - they just saw the smile on my face. I am exhausted now though! Can we please add you to Fibro Bloggers Directory? http://fibrobloggerdirectory.blogspot.com/p/fibro-blogger-directory.html
    We have 35 blogger's so far.

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  6. Hi All
    I have had Fybromyalgia for 3 years now. It comes and goes - I just think things are improving and then everything hurts again.

    This time round achilles tendon and elbows yet again.

    Huge improvement from taking Vitamin D tablets - get a blood test to see if you are low on Vit D - it took 2 years for me to have this test and I am now on large doses of Vit D and I am so much better. I can actually stand up and move about without looking about 90 years old!
    Best wishes Tufty

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  7. Hello, I have had rheumatoid arthritis for 28 years-I'm 49 and was diagnosed with fibro 8 years ago. I was on long term NSAIDS and developed a sensitivity to all of them( have profound edema) so suffered for 6 years after stopping those. My new PCP--he's young suggested I try Tramadol three times a day. I reluctantly began them and was astonished to be relatively pain free since I have been on it. I adjust my dose depending on the day, but it is remarkable that I don't have the extreme fatigue and profound pain that I had. Vicodin was what I resorted to when I just couldn't stand the pain prior to the Tramadol, and since I have been on Tramadol for a year I haven't had to take any Vicodin. I also had ASYTM treatments at the physical therapist for an unrelated foot problem due to calcium deposits--caused plantar fascaitis and that eliminated the achilles pain that I was also having. The only 2 things that I have noticed since beginning tramadol is that I occasionally have mild itching and seem to sweat more, but compared to pain, that's tolerable.

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  8. I've had it for years before it got bad enough for someone to give it a name. In a span of ten years I've gone from exercising two hours a day to barely being able to walk sometimes. This is no way to live but I know people live with worse, I just don't want to be one of those people. I'm just too freaking tired and wrapped up in myself to care about anyone else and I hate that too.

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  9. Wow so sorry friend! I am curious how you do on the Tramadol after a longer time on it and maybe after experimenting with the dosage. I've heard of it just barely before and am not sure what to think. I'm absolutely determined to try something other than what I've been on the past 5 years {Elavil}. So totally done with that. Anyway, please keep me posted! Praying for you!!

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  10. Hi Deb, I hope the tramadol is helping you. I began it 2x a day but my Rheum doc had to adjust it to 4x a day. It works rather well for me other than my hands. Nothing seems to help with the pain in them. Just barely tap my knuckles and I am thru the roof with pain.
    I am also on Flexeril 2 tabs at night.
    I discovered the lovely Paraffin Wax hand Spa, ten bucks at a thrift store. I need more wax but it it wonderful.
    Next purchase is going to be Compression Gloves. They look to be what I need. Short of wearing winter gloves 24/7 I think these will be the way to go.
    Blessings to you
    Elizabeth

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  11. Thanks, Deb, for sharing your journey. I especially enjoyed your 10 things not to say.... I'd been feeling a bit guilty that I wasn't open to new "cures," but feel more confident that what I'm doing is the best thing for me now. The change in seasons often gets to me, and I spend more time in bed than usual. I hope you are having good days, and feel good enough to write more :-)
    I write my blog for those who have lost their jobs as Tara Green, though my name is Denise. Fibromyalgia inspired me to do this as a service to people who also have been derailed from normal life.

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  12. I've added a link to yours, Deb. I too am writing about my experiences. http://peterfibro.blogspot.com/

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  13. Love the blog, I posted a link to it here: http://cure4fibromyalgia.org/fibro/index.php?main_page=page&id=48&chapter=6

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  14. Hi Everyone,

    New to the forum. I've recently started up a blog and I'd love to share my story with you. I've had a ruff journey like all of you but I'm in a good place now. I wake up each day and kick fibro's butt. You can do the same

    Check out my blog

    http://livewithfibromyalgia.blogspot.com/

    You will find tips on healthy eating, motivating ideals, my vitamin routine which allows me to function like a normal person, tips for sleeping and so much more.

    Thanks for Reading

    Deidre

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  15. Most people do not understand the pain I am in. I have found that since I have been sick a lot of my friends don't really associate with me anymore. They say it's depressing and that they don't want to hear negative things. I wake up in the morning and it feels like I have been hit by a train. My doctor has me taking Gabapentin 800mg 3 times a day and also hydroxychloroquine 200mg twice a day. He also gave me a script for tramadol. But it was not helping me at all. I try to stay positive but it really hard sometimes when you feel bad all the time, and you can't do all the things you used to.

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  16. Santa Barbara Chiropractor Paul Zemella D.C. Treatment for Fibromyalgia
    RSS Feed

    Posted on 2011-10-14 11:31:10

    There is a mass of undependable reporting of the benefits of the use of chiropractors to treat Fibromyalgia and CFS, although few clinical studies support these claims. Since the manipulative methodology of osteopathy and chiropractic have become ever closer, and the methods of osteopathy are now widely used by massage therapists, there are clinical studies involving OMT and massage reporting that it is safe to assume that the claims of chiropractors to treat fibromyalgia are accurate. It is reported that Santa Barbara chiropractors who treat fibromyalgia with a focus on muscles, such as Morter Bio Energetic Synchronization Technique (BEST) are more likely to be helpful in FIBROMYALGIA cases than the more active adjustment methods, although these do have their place when joint restrictions are a feature.

    Like other health practitioners, Santa Barbara Chiropractors follow a standard routine to secure the information they need for diagnosis and treatment. They take the patient’s medical history, conduct physical, neurological, and orthopedic examinations, and may order laboratory tests. X-Rays and other diagnostic images are important tools because of the Chiropractor’s emphasis on the spine and its proper function. Santa Barbara Chiropractors also employ a postural and spinal analysis common to Chiropractic diagnosis. In cases in which difficulties can be traced to the involvement of musculoskeletal structures, Chiropractors manually adjust the spinal column. Some Chiropractors use water, light, massage, ultrasound, electric, and heat therapy. They also may apply supports such as straps, tapes, and braces.

    Santa Barbara Chiropractors may counsel fibromyalgia patients about wellness concepts such as nutrition, exercise, changes in lifestyle, and stress management, but do not prescribe drugs or perform surgery.Some Chiropractors specialize in sports injuries, Neurology, Orthopedics, Pediatrics, nutrition, internal disorders, or diagnostic imaging.

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  17. Part 1
    Do not do chiropractics or physical therapy!!!

    I was involved in an auto accident 4 years ago. Soon after the accident, I quit the physical therapy because it triggered major headaches. I decided to take it easy because any physical activities seemed aggravating.

    One year after the accident, I started to see doctors again because I still could not really assume common housekeeping without all kinds of aches and pains. Of course, doctors did not believe me and thought that I was afraid of hurting myself (implying psychological problem). I tried Chiropractics and Yoga, and they did not do any good and probably sped up the downward spin. Because of nausea, I lost 20 pounds in two months after I started Chiropractics and Yoga.

    I noticed something going on in my ears soon after the accident, but I was told by the doctor that it was my nerve and later mid ear fluid by a different doctor. About two years after the accident, I became practically deaf on one side. You would think that the doctors should take my situation a little bit seriously. Not really, the ENT doctor basically guessed that it was a freak viral infection knocking out one side of my hearing and I made up all the other symptoms trying to blaming my hearing loss to the accident or I was psychotic.

    I tried different doctors and got diagnosis such as Migraine and Fibromyalgia, they were just names doctors gave to the condition they did not know the cause and little practical significance to me. I had to try to figure it out myself before I was completely deaf.

    Thanks to internet, I found the possible cause: spinal fluid leak (CSF leak). But it took forever to convince doctors because they thought CSF leaks were rare and they did not know that some people with leaks did not have "enhancement" in the brain MRI which was known by a Mayo doctor in later 90s'.

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  18. Part 2
    Anyway, I had the opening pressure measured in Jan of 2010, it was quite low (21 mmH2O) and it was not even my most miserable time (vomit if I did not lie down). But they failed to identify the leak site because there was no pressure after some CSF sample taken for analysis and I was kept flat during the test. Another problem was that the doctor ordered the test could not even tell the pressure was low. I decided to go to Mayo clinic, but the pressure was normal (158 mmH2O) after I had 3 months of bed rest because the hearing nerve of my good ear was on its lost straw too even though I still had near normal hearing. I believe that the leak had sealed many times during last four years.

    There is not much known about the problems of Dura and I speculate that Dura might heal in a form of scar tissues for some people. Each time it was tore again at the scar tissues, the problematic site might become larger and that can explain the overall downward trend for 10% of people ( 3:1 of women) after soft tissue type of injuries (minor injuries actually). That is a depressing possibility because locating the site and the surgery probably will make little difference. Some people at CSF leak blog claimed that the surgery made it worse and I believe them. The tear could seal on its own by restraining from physical activities and plenty of bed rest (reducing the pressure in the spine). Putting stitches around the problematic site can only increase the scar tissues by more punctures in the Dura at the problematic site

    Anyway Migraine, Fibromyalgia and so on have similar symptoms as CSF leaks and all affect women more. It was outright sexism that the research has been focus on hormone and psychology. Not until the doctors give up the idea that CSF leak is rare and sub conscience sexism, the cause of quite common condition (headaches) can be realized and then focus on research of the real cure. If CSF leak could happen to me, it can happen to anyone and over 40 million Americans have chronic headaches and 70 % of them are women. I believe that all related diagnosis have the same underline cause: CSF leaks at various levels. It is time for doctors to give up the nonsense that women are more moody, more sensitive and more prone to certain diagnosis; women have higher tolerance to discomfort because monthly and childbirth can be uncomfortable.

    I believe that women are less muscular (lower testosterone) and more flexible (biological necessity for pregnancy and childbirth). Those factors make their Dura more vulnerable to even minor trauma and for the same reason they prolong the healing time which in turn increases the chance of scar tissues and recurrent tears. I am not a native speaker and forgive about my language skill.

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  19. Part 3
    My posts did not mean to be negative or scare anyone here. CSF leak does not cause significant hearing loss unless it is severe enough to decrease the pressure in the central nervous system to 60 mm H2O or less. The percentage of deafness is 50 among the known cases of Intracranial Hypotension secondary to CSF leak. Even with low pressure, the chance of deafness is 50:50 and probably dependent on how long your condition has been and how low the pressure is.

    When a neurologist diagnosed me having FM, she said 25% of FM cases were trigged by physical traumas. Postural headache is the classic symptom of CSF leak (the dumbest doctor should know it), but increasingly different headache patterns are being recognized by specialists. Postural nature of the headache usually became less obvious with time and some people denied that they ever had headache even when they already had significant hearing loss. Everybody is different; symptoms of CSF leak can be immediate, or days, weeks or even months later. If your symptoms showed up months later after the actual causal event, your probably would never connect them together.

    You said that you started to have hearing problem. From my experience, those so called “aura” is really the slight hearing fluctuation or pressure change in ears because of pressure change in the central nervous system. The inner ear is sensitive to pressure change in brain because one section of the inner ear is filled with CSF and the pressure change will disturb the balance with another section filled by different fluid. A patent inner ear can adjust to the pressure change pretty quick and the real damage is to the 8th cranial nerve. Before my hearing loss, there were all kinds of ear annoyances; clicking noises, earache, pressured sensation, muffled and distorted hearing.

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  20. Part 4
    Intracranial Hypotension is known to affect 2nd (eye), 7th (facial), 8th (hearing) and 9th (throat and taste?) cranial nerves, but 8th is usually the first to be damaged because it is notoriously fragile. 7th is dense around the cheek near temple, I started to have quite bad facial pains (left) 3 months before my left side hearing loss. 7th is next to 8th, so anyone with diagnosis like FM or Migraine having bad facial pains, he or she really should go to a good neurologist and have CSF leak checked or rest (or better bed rest) as much as possible. CSF is the cushion for brain and spinal cord; of course, you can have all sorts of pains and disorders when your whole central nervous system is under stress.

    After my big hearing loss, I quit all meds because I feared that I might be sensitive to the meds. The muscles on my legs could twist into weird shapes (cramps), even my hands and feets "locked" without much warning. I could not even move, not to mention the pains of that kind of muscle spasms without muscle reluxant.

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  21. Hi Deb:

    I enjoyed reading through your blogs . . . just wanted to let you know I added your blog to my blogroll.

    Terri
    RainingSoftly.com

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  22. Hi Deb. I found you through my sister who also has fibro. I don't know how most people keep doing what they do with the pain, but then I remember that I kept on working right through my pain too! I hope you had a great holiday and are having a good new year.

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  23. Thanks everyone for taking the time to read my blog. I had a lengthy hiatus from writing, but am back and ready to write.

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  24. Chiropractic Neurologist Dr. Jacob Bastomski

    I would be glad if you check out the best chiropractors in Santa Barbara who can be of great help for treatment.

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