30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are Fibromyalgia, Chronic Fatigue Syndrome, and scoliosis in my neck. And I had a double-level spinal fusion at L4-L5-S1.

2. I was diagnosed in the year: Spondylolisthesis: 1993; Scoliosis and Fibromyalgia (as well as a hematoma on my T2 vertebrae): 2007; CFS: I've always just known.

3. But I had symptoms since: CFS started when I was a teenager, severe back pain started when I was 23 (spondylolisthesis), spinal fusion in 2003, car accident in 2007, FMS diagnosed in late 2007.

4. The biggest adjustment I’ve had to make is that I can't do the things I used to do.

5. Most people assume that I'm blowing this out of proportion, or that if I "just exercise" I would get better.

6. The hardest part about mornings are waking up to pain, stiffness, and another day of the same.

7. My favorite medical TV show is House, of course!

8. A gadget I couldn’t live without is my TENS unit. If you have back pain, I highly recommend you getting one!

9. The hardest part about nights are not being able to sleep because of the pain, or having bad dreams when I do sleep.

10. Each day I take approximately 25 pills & vitamins.

11. Regarding alternative treatments, I am open to it if it works.

12. If I had to choose between an invisible illness or visible I would choose the one from which I would experience less pain

13. Regarding working and career: I am currently unable to work because I can't sit up due to severe lower back, hip, and leg pain.

14. People would be surprised to know that I used to be very active; I was a hard worker; I excelled in college; I'm close to earning a Master of Arts in Education; I was fiercely independent.

15. The hardest thing to accept about my new reality has been that I can no longer do the things I used to do, the things I want to do, the things I need to do.

16. Something I never thought I could do with my illness that I did was take road trips to Dallas, go to hockey games, and still be able to have fun.

17. The commercials about my illness are a joke!

18. Something I really miss doing since I was diagnosed is going to school and feeling well.

19. It was really hard to have to give up my life.

20. A new hobby I have taken up since my diagnosis is researching my illness.

21. If I could have one day of feeling normal again I would enjoy it to the fullest.

22. My illness has taught me to be mindful of my limitations.

23. Want to know a secret? Things people say that gets under my skin are "you should exercise more" or "walk it off".

24. But I love it when people understand and accept my limitation and don't try to fix me.

25. My favorite motto, scripture, quote that gets me through tough times is: When someone I love tells me, "I love you."

26. When someone is diagnosed I’d like to tell them to research every aspect of their illness, and to take that research to their doctor. If your doctor does not allow you to be an active participant in deciding on treatments, get a new doctor.

27. Something that has surprised me about living with an illness is how people will abandon their friendships with you just because they don't know how to handle it.

28. The nicest thing someone did for me when I wasn’t feeling well was made me dinner and brought it over.

29. I’m involved with Invisible Illness Week because I may not look sick, but I am sick.

30. The fact that you read this list makes me feel like someone is listening.

Are we making ourselves worse?

Fibromyalgia is hard enough, but are we making ourselves worse - or putting ourselves in potentially lethal situations - with the myriad of medications we take to control our symptoms?

In an effort to research and understand my own changing symptoms and worsening condition, I have come across two drug reactions of which chronic pain sufferers should be made aware. One is potentially lethal and something of which I had never before heard: serotonin syndrome.

The following information is gathered from various websites, to include WebMD and Wikipedia. This information is for educational purposes only and is not intended to diagnose. Please, please see your doctor immediately if you think any of these could apply to you! We wonder why we never seem to recover - this could be why!

Opioid-induced Hyperalgesia

Opioid-induced hyperalgesia (OIH), also referred to as opioid-induced pain, refers to a phenomenon whereby opioid administration results in a lowering of pain threshold, clinically manifest as apparent opioid tolerance, worsening pain despite accelerating opioid doses, and abnormal pain symptoms such as allodynia (pain due to a stimulus that does not normally provoke pain).

In other words: patient take opioids, patient begins experiencing a lower pain threshold, patient seems to build up a tolerance to the pain medication, the pain gets worse even with increased dosage and patient experiences pain from stimuli that should not cause pain.

Examples of opioid analgesics:

buprenorphine (Buprenex)
butorphanol (Stadol)
codeine (Tylenol with codeine)
fentanyl (Duragesic)
hydrocodone (Vicodin)
hydromorphone (Dilaudid)
methadone (Dolophine)
morphine (Astramorph)
oxycodone (OxyContin)
propoxyphene (Darvon)

Again, this information is intended to inform – not diagnose. If you feel you are taking a lot of pain medication and the amount you need just to be comfortable is increasing – and that the medication is no longer working for you – see your doctor immediately. There is some information about the rotating of opioids (regularly changing the medication taken) to avoid opioid-induced pain.

This is how I came across this information: I first heard about this reaction in an episode of House (of course), in which a patient suffered from chronic, debilitating pain (sound familiar?). Opioid-induced pain was one of the many diagnoses. While I saw myself in the patient depicted, I did not see the given diagnoses in me.

Last week, I told my Momma that my medication wasn’t working for me anymore. I spend my days in bed, writhing in pain, crying, praying for some kind of relief, and wondering how I am supposed to continue to exist while suffering so.

Then, I run out of Percocet…and I didn’t have the funds to pay for my new prescription. As I waited for Medicaid to kick in (see previous post), I took Vicodin. The Vicodin was half the dosage of the Vicodin I used to take before being put on Percocet, so I did not expect to experience any relief. The first couple of days were hard, very hard. The pain in my back, hips, and legs was crushing (as it always seems to be). However, the pain started changing! After three days or so, no longer was I writhing, crying, and screaming because of the pain. It was still there – and don’t get me wrong, it was still unbearable – but it was different. And, amazingly enough, it was almost controllable!

It didn’t occur to me at first. Over a few days, even through severe cold/flu symptoms, I noticed the change in the way I could move and in the amount of time I could wait before taking my next dose. Then it occurred to me that my worsening pain could be the result of opioid-induced hyperalgesia. It makes sense, it fits, and it’s something I will be discussing with my doctor immediately.

I did get my refill of Percocet today. However, I am now cutting the pills on the scoring line to reduce the amount of medication I take until I see my doctor to discuss changing and rotating my pain medications.

Serotonin Syndrome

Serotonin syndrome is a potentially life-threatening adverse drug reaction that may occur following therapeutic drug use, inadvertent interactions between drugs, overdose of particular drugs, or the recreational use of certain drugs. Serotonin syndrome is not an idiosyncratic drug reaction (drug reactions which occur rarely and unpredictably amongst the population); it is a predictable consequence of excess serotonergic activity at central nervous system (CNS) and peripheral serotonin receptors.

According to the Mayo Clinic, number of over-the-counter and prescription drugs can lead to serotonin syndrome, especially antidepressants. Illicit drugs and dietary supplements also can cause the condition. These drugs and supplements include but aren't limited to:

Serotonin reuptake inhibitors (SSRIs): antidepressants such as citalopram (Celexa), fluoxetine (Prozac, Sarafem), fluvoxamine, paroxetine (Paxil) and sertraline (Zoloft)

Serotonin and norepinephrine reuptake inhibitors (SNRIs): antidepressants such as trazodone and venlafaxine (Effexor)

Bupropion: an antidepressant and tobacco-addiction medication (Wellbutrin, Zyban)

Monoamine oxidase inhibitors (MAOIs): antidepressants such as isocarboxazid (Marplan) and phenelzine (Nardil)

Anti-migraine medications: such as almotriptan (Axert), naratriptan (Amerge), sumatriptan (Imitrex) and zolmitriptan (Zomig)

Pain medications: such as fentanyl (Sublimaze), meperidine (Demerol), pentazocine, (Talwin) and tramadol (Ultram)

Lithium: (Eskalith, Lithobid), a mood stabilizer

Herbal supplements: including St. John's wort and ginseng

Over-the-counter cough and cold medications containing dextromethorphan (Robitussin DM, Sudal DM)

Anti-nausea medications such as granisetron (Kytril), metoclopramide (Reglan) and ondansetron (Zofran)

Linezolid (Zyvox), an antibiotic

Ritonavir (Norvir), an anti-retroviral medication used to treat HIV/AIDS

Taking any of these medications concurrently could increase your risk of serotonin syndrome!
Serotonin syndrome symptoms typically occur within several hours of taking a new drug or increasing the dose of a drug you're already taking. Signs and symptoms include:

• Agitation or restlessness
• Confusion
• Rapid heart rate
• Dilated pupils
• Loss of muscle coordination or twitching muscles
• Heavy sweating
• Diarrhea
• Headache
• Shivering
• Goose bumps

Severe serotonin syndrome can be life-threatening. Signs and symptoms include:

• High fever
• Seizures
• Irregular heartbeat
• Unconsciousness

While the Mayo Clinic states that the symptoms present shortly after starting a new medication, I feel it is imperative that you see your doctor if these symptoms present at any time while you are taking the medications (or similar medications) listed!

While I would be happy to answer any questions about these drug reactions, I strongly urge you to see your doctor if you feel either of these could be affecting you. I am not a doctor, but a sufferer just like you. Thus, I state again, this information is intended to educate and not diagnose! Do NOT stop taking your antidepressants or other medications without first seeing your doctor!

IGuard is a great website in which you input all your medications and supplements, and receive a report regarding potentially dangerous drug interactions. I learned about Serotonin Syndrome through this site as a potentially dangerous interaction between my anti-depressant and Percocet.

Keep aware - keep safe.

(((Gentle Hugs!!)))

Jessica

Music therapy

Isn't there a saying about music soothing the savage beast?  Or something like that??  For music lovers, different music can elicit different emotions and feelings.  My favorite band, Blue October, elicits a feeling in me that I am not alone in my emotional pain.  Sometimes, however, I have to forego Blue October because it makes me cry uncontrollably (as I learned on the ride back from Lubbock, but I was already emotionally fragile at the time).

My long-time friend, Diane (now goes by Molly), also suffers from Fibromyalgia.  To say that she loves music is like saying we, as humans, need oxygen.  I think she has the right idea, though.  Music seems to be her lifeblood, it keeps her going.  Even if you don't suffer from debilitating pain, music should be an important component in all our lives.

I have been listening to music for as long as I can remember.  I remember that the channel that would become FOX used to just play music, like a radio station on the TV.  My brother and I would sit and listen to it, and our only rock station on the radio, for hours.  My favorite toy was my record player and I would take my momma's records and play them over and over again.  I just loved music, and that never changed.

Since going on medical leave in February, I have done little more than lay in bed and read or play my DS.  The pain was too much to ever get up and do anything other than attend doctor appointments.  Recently, however, I discovered the music channels on cable.  I knew they were there, but never paid much attention to them.  Our local rock station sucks, by the way, so I never listen to it anymore.  Being on medical leave and having no income, I couldn't keep up the payments on my satellite radio, so that was out as well.  But a few weeks ago, I started tuning into the Rock and Classic Alternative music stations on my cable box.  They were good, but not good enough.  At night, I change to the "Soundscapes" station for soothing music as I fall asleep.  Yesterday, however, I discovered the "Retro Rock" and "Classic Rock" stations.  OMG, what a change in my mood!

These two stations play the music I grew up listening to: Led Zeppelin, Beatles, Lynard Skynard, classic Aerosmith, Kansas, Electric Light Orchestra and so many others!  They play songs I haven't heard in years, but still remember the words to; songs that make me want to get up and move; songs that make me smile and make me thing, "I love this song!"; songs that, somehow, remind me that life is worth living and living well.

Honestly, if it weren't for the back pain, I would be dancing!  I actually did try to dance a little on the way to the bathroom, but my back screamed that it was not ready for such movements.

Now, I am not saying the music is curing me.  But it is sure making me feel better emotionally, which improves my mood, and may, eventually, help me with my physical pain.  I am once again tapping my feet and singing along with the music I have always loved (currently Blind Faith's "Can't find my way home").

If it weren't for the pain, I would feel almost normal!  Music does, indeed, sooth the savage beast! Give it a try...it can't hurt (unless you start dancing before your body is ready)!

Gentle hugs and rock on!

Jessica

My life as an onion

I just got home from Lubbock, where I was seen by a pain management specialist at the Texas Tech Pain Center on the recommendation from my older brother.  His wife has been suffering from FMS and other disorders and she has been treated there for quite some time and is now doing much better and functioning!

The appointment didn't go as well as I had hoped it would.  I guess I was hoping for some miracle drug or procedure that would stop the pain completely and give me a new lease on life.  Needless to say, that didn't happen.

What did happen plummeted me into hysterical, inconsolable, and uncontrollable crying.  I was actually crying before the appointment.  We had just driven to Lubbock from El Paso (my son drove, I mainly did my best to be comfortable laying in the backseat of my tiny Saturn Ion), I was nervous about the appointment, and I just was not feeling well.

I didn't have to wait long until being called into the examination room.  My brother went with me because he has so much experience dealing with the doctors there and he remembers everything. I remember nothing...ever...so it was important to have someone there to tell me what happened later.

Texas Tech is, of course, a teaching hospital.  The "fellows" at the pain clinic are actual doctors, usually anesthesiologists, who are receiving extensive training in pain management procedures.

I lay on the uncomfortable examination table for just a few minutes before one of the "fellows" comes in to do his "examination" before I am seen by the attending doctor.  He didn't examine me, he tortured me.  He contorted my back in ways it should not have been moved (I swear he used his knee in my spine to bend me), he found every painful point on my body and manipulated it until I screamed.  I felt like I was in an inquisition and being "put to the question". I almost confessed to being a heretic and would have welcomed being garroted at that point.  I cried, I cussed, I told the "fellow" I was going to have my brother kick his ass, and I told him I didn't like him and to get away from me.

My brother and the fellow assure me that this torturous examination was necessary.  I hated both of them at that time, because I could have just told them where I hurt!

But that was it.  That was my examination that told the attending doctor what was wrong with me: I have overall body pain.  No X-rays, no MRI, no blood tests, nothing else.  Of course, they had copies of my previous tests and x-ray results; they knew I had previously had a spinal fusion surgery and scoliosis in my neck due to a car accident two years ago; but they didn't try to pinpoint why I was having the overall body pain.  Once again, the diagnosis was the dreaded Fibromyalgia.

Allow me to digress.  Ever since I received that diagnosis in 2007, I have been requesting additional tests to be done to rule out FMS. I had my doctor test for hypothyroidism, hyperthyroidism, renal fatigue, renal failure, hormone imbalances, and a dozen other things I can't remember right now.  All my tests came back normal, so I was stuck with this diagnosis.  I just wanted it to be something treatable!!

Back to Lubbock: the attending came in and told me things I already knew.  I had FMS and my muscles hurt.  He suggested I start taking Savella (a new drug designed only for Fibromyalgia), find a muscle relaxer with which I won't have adverse reactions (I'm allergic to many muscle relaxers), and start aquatic therapy.  He wouldn't give me the prescriptions because I don't live in Lubbock and he won't be able to follow up with me on my progress, so he gave me a note to give to my PCP to prescribe the medications for me.  Puh.  I just called my doctor's office and told them, and the prescription was called into a Lubbock Walgreens by the end of the day.  My doc is cool like that.

As I was listening to the attending doctor reiterate what he had already told me, it dawned on me that that was it.  That is all they are going to do for me.  Torture me, then prescribe a medication my doctor was going to put me on anyway (as soon as he received information about it).  Nothing more.  I started crying while the attending was speaking to me, then I started bawling, then it turned into the ugly face, uncontrollable loud bellowing that was probably heard throughout the clinic. I couldn't help it. All I felt, besides the intense pain throughout my body, was greif. Going to Lubbock was, to me, my last hope at finding relief and I got nothing.

But why the "onion" in the blog title?  I was talking with my brother the following day about how disappointed I was with the doctors at the pain center and how I didn't feel I received the right medical treatment.

My brother used a metaphor he had learned from another doctor at the pain center when his wife was being treated there: treating someone with pain management is like peeling an onion.  There are so many layers the doctors have to go through in order to get to the heart of the problem.  After you get through the first thin layers, you really have to work at getting through the rest.

My brother told me that, despite the fact I have bonafide reasons for back pain, I have to address my severe depression before I will be able to get better.  He told me that I had been depressed almost my entire life, and for good reasons (the reasons will not be discussed here).  He told me that I have to be seen by a psychiatrist as soon as possible, not just for mental health reasons but also to have my medications reviewed and, if necessary, modified.  He told me that once I am healthy mentally, I can start working on getting healthy physically.  It was the first time he spoke to me like he actually cared, and he made some great points and observations.

So now I embark on my life as an onion.  I will start psychiatric treatments soon (just waiting for the call-back), and start working on being more physically active.  I do need someone to go to water aerobics with me.  Any takers?

I think my doctors are going to have their work cut out for them.  My layers are pretty thick, as I have built walls, posted guards, and given the command to shoot at will at anyone who attempts to access certain parts of my life from which I have worked so hard to distance myself. 

But I want to get better, so let the peeling begin.

Sleepless

As many people with FMS know, one of the symptoms to this disorder/disease/whatever is insomnia.  We can't sleep because of the pain or the depression. Sleep aids, whether over the counter or prescribed, do little good. 

I have been taking Dalmane for my insomnia.  My problem is that I build up a tolerance to certain medications rather quickly.  While my body is exhausted (all the time) and I can barely keep my eyes open after taking my bedtime medication, as soon as I lay down, put on my sleep mask (so the sun doesn't disturb me), I'm awake.  Lately I have been up until 5:00 a.m. or so just trying to fall asleep.  It's 5:00 a.m. now and I go so frustrated about not being able to sleep that I decided to blog about it.

I have tried just about everything: hot chamomile or sleepytime tea at night (even though it's about 90-95 degrees after the sun goes down), hot baths, meditation, listening to relaxing music, listening to talk radio that should bore me to sleep, reading, etc, etc, etc.  I don't know what to do anymore!  I'm sick and tired of being sick and tired!

When I do fall asleep at about 5:00 or 6:00 in the morning, I start waking up at around 9:00 or 10:00.  I roll over and go back to sleep, but only for about an hour or two.  Thus, I am not getting adequate sleep.  I nap in the afternoons sometimes, which isn't a problem.  It's getting to sleep at night when I have issues.  Could this be psychological?  I sometimes have disturbing dreams when I do sleep and often wake up depressed because of them.

I need to know if anybody out there has another trick to fall asleep.  I need help...and FAST!

Gentle hugs and restful nights to all,

Jessica

Find me on Twitter at: http://twitter.com/fmslife

The importance of B-12

What are the symptoms of a vitamin B-12 deficiency?

• Energy. Even minor deficiencies of vitamin B-12 can cause anemia, fatigue, shortness of breath and weakness.
• The Nervous System. Deficiencies of B-12 can cause neurological changes including numbness and tingling in the hands and feet, balance problems, depression, confusion, poor memory and Alzheimer's-like symptoms. Long-term deficiencies of B-12 can result in permanent impairment of the nervous system.
• The Gastro-Intestinal System. B-12 deficiency can cause decreased appetite, constipation, diarrhea or alternating constipation/diarrhea (also called Irritable Bowel Syndrome), weight loss and abdominal pain.
• The Immune System. Vitamin B-12 is necessary for normal functioning of white blood cells. Studies show that B-12 helps regulate Natural-Killer T-cells and prevents chromosome damage.
• The Cardiovascular System. Vitamin B-12 participates in the conversion of homocysteine to methionine. Elevated homocysteine levels are a known independent risk factor for heart attack, stroke and thrombosis. Without adequate B-12 levels, homocysteine levels typically rise.
• Special Senses. Degenerative changes in the central nervous system caused by B-12 deficiency can also affect the optic nerve, resulting in blue-yellow color blindness.
• Other Symptoms of vitamin B-12 deficiency include sore mouth or tongue
• In Infants and Children, signs of vitamin B-12 deficiency include failure to thrive, movement disorders, delayed development, and megaloblastic anemia. (ProHealth)

Who suffers from B-12 deficiency and why?

Recent studies show that up to 78% of senior citizens are B-12 deficient.  Though no specific percentage was reported for the general population as a whole, it is reported that the segment is much larger than previously thought.

78% of fibromyalgia patients, and 77% of patients with chronic fatigue syndrome, suffer from irritable bowl syndrome (IBS), which is a major cause of vitamin B-12 deficiency.  Which came first? Are fibromyalgia patients B-12 deficient because of IBS, or is IBS a result of a cellular or neurological insult caused by a B-12 defiency?

Other high-risk groups for B-12 deficiency include:

• Those who use acid-blocking or neutralizing drugs (such as Prilosec, Prevacid, Nexium and others);
• Those who use drugs which impair intestinal absorption (such as Metformin, Questron and Chloromycetin);
• And people who have had gastric surgery.

The most recent and disturbing studies suggest that vitamin B-12 deficiency is more prevalent in young adults than previously thought. One study found that vitamin B-12 deficiency was similar in three age groups (26-49 years, 50-64 years, and 65 years and older), but that early symptoms were simply less apparent in the young. This study also found that those who did not take a vitamin B-12-containing supplement were twice as likely to be deficient as supplement users, regardless of age.

Secondly, unlike other water-soluble vitamins, B-12 is stored in the liver, kidneys and other tissues. Deficiencies of B-12 often appear so slowly and subtly as to go unnoticed, and blood tests for vitamin B-12 levels miss early deficiency states at least 50% of the time.

Which form of B-12 should you take?

Vitamin B-12 is a collection of four related, but different, cobalt-containing molecules.  Each of these forms plays a distinct role in the body:

Hydroxycobalamin is a unique form of B-12 that quenches excess nitric oxide (NO-), the precursor to peroxinitrite (ONOO-). Hydroxocobalamin (and methylcobalamin) also play a more important role in addressing neurological disorders than cyanocobalamin.

Hydroxocobalamin participates in detoxification, especially cyanide detoxification. Cyanide levels are typically elevated in smokers, people who eat cyanide-containing food (like cassava) and those with certain metabolic defects. Excess cyanide in the tissues blocks conversion of cyanocobalamin to methylcobalamin or adenosylcobalamin. In such instances, hydroxocobalamin is the vitamin B-12 of choice. Hydroxycobalamin is FDA- approved as a treatment for cyanide poisoning.

Methylcobalamin is considered by many researchers to be the most active form of vitamin B-12. It is the requisite form of vitamin B-12 in the methylation cycle. Methylcobalamin protects cortical neurons against NMDA receptor-mediated glutamate cytotoxicity and promotes nerve cell regeneration. Methylcobalamin is the only form of vitamin B-12 that participates in regulating circadian rhythms (sleep/wake cycles). It has been shown to support improved sleep quality and refreshment from sleep, as well as increased feeling of well-being, concentration and alertness.  (Read: constant fatigue and fibro-fog!).

Adenosylcobalamin (dibencozide), another highly active form of vitamin B-12, is essential for energy metabolism and is required for normal myelin sheath formation and nucleoprotein synthesis. Deficiencies are associated with nerve and spinal cord degeneration.

Cyanocobalamin, the most common form of B-12 found in nutritional supplements, is a synthetic form of B-12 not found in nature. It has the lowest biological activity and must be converted in the liver to more biologically active forms. This conversion is inefficient and some people who may not benefit from cyanocobalamin due to lack of assimilation or conversion. However, the cyano form of B-12 is needed to balance hydroxycobalamin in performing its NO-quenching function and should therefore be included in hydroxocobalamin supplements.

Since vitamin B-12 (especially the hydroxocobalamin and methycobalamin forms) offer such potential benefits for multi-system disorder sufferers (fibromyalgia, chronic fatigue syndrome, etc) - without known risks - it seems reasonable to suggest that anyone suffering with fibromyalgia should consider taking a supplement containing these two important forms of vitamin B-12.

Furthermore, because of the balancing effect that cyanocobalamin has on hydroxycobalamin and the protective and regenerative effect that adenosylcobalamin exerts on the myelin sheath of nerves, these forms should also be considered as an important part of any complete vitamin B-12 supplement.

B-12 in the cyanocobalamin form can be found everywhere and the other forms are extremely hard to find.  Major drug stores and supermarkets will not carry any form other than the cyano. After much search, I found the best place to get these other forms of B-12 is through Amazon. Of course, I find everything I need from Amazon (which is why I share the links with you).  Thus, I am including links for these forms of B-12 to be purchased through Amazon.  If you can find the products cheaper anywhere else, please share your find!

Gentle hugs and an abundance of B-12 to all!

Jessi

Reference:

Myatt, Dana. (2008). B-12 Deficiency in ME/CFS and FM May Provide Clues & Relief. Retrieved from http://www.prohealth.com//library/showArticle.cfm?libid=13595

Defeated

This week has not been kind to me, to say the least.  I feel I'm slipping deeper and deeper into the "pit of despair" (Princess Bride reference, to be said with a raspy voice).  There is so much I have to do, but I do not have the energy or desire to do any of it anymore.

My Momma keeps telling me that being disabled is a full-time job.  She is absolutely right, but the pay is lousy!

Since I have been out of work on medical leave, I have applied for Social Security disability benefits and SSI (did you know you could get both if approved?), I have accepted a piddly sum as settlement for the car accident that caused me to be in so much pain (FYI - two years of pain and suffering, and a projected lifetime of the same, is worth about $8000), I have fought with my insurance company over whether or not I was actually covered (payed for extended benefits through COBRA and they insisted for weeks that I was not insured), and have done countless other things, most of which I cannot remember, to include re-evaluating my life completely.  Did I mention I'm also still working on my graduate degree?

I have requested countless forms to be completed by my doctor for the purpose of short-term disability, "extended" medical leave, FMLA, State assistance, Social Security, exclusion from jury duty (I was approved for a lifetime exclusion - it can be done!!), and God only knows what else.  I can't tell you how many trees were killed during this process, but I won't accept responsibility for their deaths!

There were days when I spent literally hours on the phone with one agency or another, just trying to get help - financial, medical, whatever.  The $8000 is completely gone, as I had to pay for COBRA, get caught up on my car and mortgage payments, and pay for my medication out of pocket (EXPENSIVE!) until my insurance company decided I was covered.  I really need to submit for reimbursements!

The thing is, I don't care anymore.  Maybe it's only that this week has beaten me down (on top of everything else, my refrigerator died - I need a new compressor and don't have the money to get it fixed).  I may wake up tomorrow and feel a new fight building deep down inside of me, but today I just want to curl up into a fetal position (which I can't because it would hurt) and sleep until everything is back to normal again.  I don't want to call my insurance company (who is stating I am, once again, not covered); I don't want to work on my classwork or homework, despite the needed distraction from my life; I don't want to do anything.  Nothing.  

Well, that's not necessarily true.  I want to have a temper tantrum.  An all-out, screaming, stomping, throwing things, kicking things, gut-wrenching hissy fit.  I want to feel something besides the pain.  I want to feel the anger, the passion, the fight - something that will get my blood boiling to the point that I want to get up and act in self-preservation, something that will make me feel anything other that complete defeat.

I wanna get me a little oblivion, baby 
And try to keep myself away from myself and me 

 - Counting Crows, "Perfect Blue Buildings

From August and Everything After

This is just my rant for today. I'm exhausted, hurting, and don't want to play anymore. I promise that not all posts will consist of my whining about how much this sucks.  Maybe some, however. I know I am not alone in my feelings, but I feel completely and utterly alone in everything else right now.

I keep hearing that things will get better.  My only question is: How?

Understanding FMS, part 1

For anyone who knows someone who suffers from Fibromyalgia:

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3.My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appetite is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well or that I have been cured. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be.

Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes...or their bodies!

Author unknown

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My personal contributions:

Don't ask me how I feel unless you really want to know. I'm not going to lie and say I feel "fine" just to make you feel better.  I'm not fine.

Don't ask me if I'm getting better. There is no "getting better" with Fibromyalgia. Everything changes from day to day, minute to minute, even second to second. It's all about learning how to manage the pain and other symptoms when outside stressors, the weather, and sometimes nothing at all can change where it hurts, how it hurts, and how much it hurts.

I'm not asking for your pity. I'm asking for your understanding and compassion. If you really want to help me, hold the door open for me when I have to use my pimped-out walker; or just talk to me, make me laugh, focus on my abilities instead of my disabilities. If I need to vent, just listen (and it helps to validate my ventings). There is no right thing to say. In fact, more often than not there is nothing that can be said to make things right, make me feel better physically, or change my life or perspective.  But one happy or funny moment could change my day.

If I'm crying, it's ok to talk to me. I don't cry (much) from the pain, unless it's one of my "episodes" that landed me in the hospital last year. I cry because I'm stressed out, exhausted, overwhelmed, pissed off, feeling emotional, or just plain frustrated. Sometimes it's just one remark that sends me over the edge. Sometimes I'll cry if I'm asked about my pain, though I'm getting better at this. At any rate, I cannot control this any more than I can control the weather. 

In short, don't avoid me because you don't want to deal with my issues. I don't want to force them on you and, for the most part, won't even mention them until you ask. Unless you're my Momma. I seem to unload all my pain and symptoms onto my Momma because she'll actually listen to me and not judge.

Which brings me to my final rant: don't judge me. I don't have control over my symptoms, which includes my inability to remember what I need to do as well as function as a normal person.

Keep in mind that Fibromyalgia it is incurable. And ask anybody who suffers from FMS and they will tell you that it is, for the most part, resistant to medications. If I had to list the number of medications I have to take in order to function (and I use that term lightly), you would be shocked. I'm always afraid I'm going to OD because I have to take SO MUCH pain medication just to be able to bring the level of pain down to something more bearable. It never completely goes away. 

I can understand that maybe some feel FMS is not such a big deal. After all, it's not cancer. It's not heart disease. So, it's not considered fatal by those standards. However, there are people who suffer from FMS who consider suicide as their only option for relief. I've never told my family this, and it may come as a shock to those who know me, but I considered it myself on a few occasions. Dr. Jack Kavorkian (remember him?) assisted suicide in Fibromyalgia patients. People who suffer from Fibromyalgia feel helpless, hopeless, and unable to obtain any relief from pain and the myriad of other debilitating symptoms associated with FMS (which stands for FibroMyalgia Syndrome). So, it is not life-threatening by the classic definition, but don't say this to fibro sufferers. This is not a harmless disease.

Fibromyalgia is a very hard disease to go through alone.

Introduction

Welcome to Fibro Blog! 

My name is Jessica and I was diagnosed with Fibromyalgia in November 2007, seven full months after being rear-ended in a car accident.  I had back problems previously, having had spondylolisthesis and a double-level spinal fusion at L4-L5-S1 in 2003.  Thankfully, the accident did not displace any of the instruments currently implanted in my lumbar spine.  However, the pain I experienced after the accident, and to this day, is more intense, more excruciating, than the pain I suffered with spondylolisthesis.  At least with the spondy, it was more acute and not the constant, uncontrollable pain I experience now.

After my accident, the pain never went away.  I tried to work through it - literally, full-time job and pursuing a graduate degree in education - but it never stopped, continued to intensify, and continued to change every aspect of my life.

I tried many things before my diagnosis, to include steroid injections directly into my cervical and lumbar spine.  I gave up on those for two reasons: 1) it didn't work; and 2) because the anesthesiologist who performed the injections (the same who was at my fusion surgery and had given me the same injections before said surgery) had to thread a tube up through my spine from my tailbone to the point at which the steroid needed to be injected (a good 6+ inches).  It was painful to say the absolute least! I sobbed on the table and tried not to move because I was so afraid of something going wrong.  I don't blame the doctor for this at all.  He was unable to inject the steroid directly into my lumbar spine due to the titanium screws, rods, and cages I currently have implanted there.  There was just no way around them.

My doctor and I were at a loss.  My MRIs and x-rays were clean, so why was I in so much pain?  My doctor's wife had just been diagnosed with Fibromyalgia and he was becoming more and more familiar with the symptoms, so he sent me to a Rheumatologist for examination.  I had several (hundred) blood tests to rule out various other disorders, diseases, whatever, and suffered through the trigger point examination recommended by the American College of Rheumatology.  11 out of 18 trigger point "hits" gets one the diagnosis of Fibromyalgia.  I believe I had 16.

So what did this mean in terms of my treatments? Increase Neurontin (Lyrica did not work for me). Increase anti-depressant.  Does the depression cause the pain or does the pain cause the depression?  In my view, both.  And it's a vicious cycle.

At this point, I am technically on my 4th medical leave from a job I've only had for 2-1/2 years.  I cannot sit up straight for more than a few minutes without severe pain my lower back, hips, and legs.  Thus, I cannot sit at a desk, answer the phone, and work at a computer.  I use my laptop at home, sometimes in bed and sometimes in my recliner.  While in my recliner, I have to be reclined at about 120 degrees (I really hope I'm figuring this right) and have full head and neck support if I'm on my laptop or just watching TV.  If I keep my head lifted off the supporting back, I experience muscles spasms, tightness, then blinding pain in my neck  - resulting in a fierce headache.  If I spend too much time typing on my laptop, however, I start experiencing moderate to severe pain in my shoulders, arms, and hands.

And it has already been too long!

In closing, I would like to welcome you back to this blog because I plan to discuss many, many things related to Fibromyalgia, chronic pain, various treatments, and disability.  It is my goal to have guest writers, such as my son who takes care of me full-time, and share various research articles with you.

Gentle hugs to all, and to all a pain-free day!