Fibro-log for 2006 - 2008
The Author's On Going
Fibromyalgia Journal Entries

May 2008 "Long Time Between Entries"

First, I would like to take a moment and apologize to all our readers for not having posted a reason or explanation for the long absence of posts in the Fibro Log. I do want to thank everyone for their continued input and support for this Web site and "The Managing My Fibromyalgia Forum" during this time. It has been your participation in the forum, your emotional and financial support that has kept the Web site and Forum going.

I have given much thought to reviving regular posts to my Fibro Log and am seriously considering doing so.

The disruption in posts should not come as a surprise to many who suffer from fibromyalgia and related disorders. As I have become older in my years [60 last December 8th] and longer in this pain and fatigue disorder, I have had the disappointment of my symptoms not improving, many times becoming worse. Fibrofog has become a big problem for me and I find it difficult to get my thoughts together and commit them to paper. The physical and mental fatigue of publishing a monthly or bi-monthly blog was becoming over-whelming at times and I thought a short break was in order. In no way did I originally intended to allow so much time to elapse. On top of everything else, I have been diagnosed as having prostate cancer and am undergoing treatment for the same.

This same situation has had me post-pone more times than I care to remember, the publishing of "The Managing My Fibromyalgia Newsletter".

This has been one person's attempt to make a difference, but being a one person run Web site has it's downside. There is no one to fill in when I'm under the weather, their are no development and research committees, administrators, graphics and media departments to pick up the slack. It has been over-whelming at times to say the least.

Meanwhile, remember May 12th, 2008 is "National Fibromyalgia Awareness Day". This day should be used to foster public awareness. Public awareness is important in order for patients to be able to receive understanding, proper diagnosis and treatment and will also help eliminate the myths, improve patient support, and encourage research.

May & June 2007 - Hello everyone. I hope your new summer season has started decently for you. I know that many with fibromyalgia have problems with extremes in weather depending where they live. They either suffer from one or the other or both, the heat and humidity of summer and the cold, wind, ice and snow of winter.

Doing or experiencing anything in the extreme is many times detrimental to the fibromite. Moderation is truly the key in managing fibromyalgia symptoms.

I recently received an email from one of our readers with some new and unique tips [new to me] for managing fibromyalgia symptoms. They are as follows:

"I have found that changing "little" things in as many areas of my life has made a big difference in how I feel".

"The first change I made was my front door knob. Believe it or not, the knob was awkward for me to turn & changing to a different style has allowed me to use my thumbs again with very little pain compared to before".

"I used to have to use my index finger rather than my thumbs to open the doors on my Jeep Cherokee. I sold my Cherokee & bought a car that has handles that open by pulling up on them".

"I recently replaced my top loading washer [a huge source of pain] with a front loading washing machine. It's on a pedestal, so I don't have to bend & I don't have to lift all that heavy laundry straight up anymore. Of course, I bought the dryer to match the washer. I am still looking for a laundromat style basket on wheels to move the laundry from one to the other".

"I have a 5 year old. I only give her piggy back rides down staircases, that way I can easily sit a few steps down & offer her my back. When I get to the bottom, I sit on the bottom step and allow her to get off on her own. Then I have the railing to help pull myself up with. I'm still a "fun" Mom, but I'm not hurting myself terribly to be fun".

"I am right handed, but I have been practicing using my mouse with my left hand. It's cordless, so it's pretty versatile & it helps to alleviate pressure in my wrists when they act up to switch hands. [I work from home on my PC; I have to be able to use my arms]"

"Recently, I have been playing around with the voice recognition program that came with my computer. I don't know if it will make a big difference in how I feel compared to the hassle of learning this program… but, if I find it does, I'll become an expert in using it".

"The last thing seems small, but makes a huge difference in my energy level. I allow myself to take a nap during the day if I need it. Ok. My body actually pretty much demands it. Usually 20 minutes sleep will snap me out of a major energy drain, but if it doesn't it has to be ok for a longer nap – guilt free".

Thank you, Kelly

This month we added a new page to the Managing My Fibromyalgia Website containing summaries and links to recent news headlines and news articles pertaining to fibromyalgia. Please check it out and let me know if you find this addition helpful.

Until next post, everyone keep your "chin up".

April 2007    Spring is supposed to be a time of renewal and life. As the flowers and cherry blossoms bloom and the grass goes from its winter brown coat to vibrant green we are inclined to believe that even our cares and troubles will decline and we can look ahead with new hope.

Well, it's not always the case, especially in my current take and view of my life and future.

My retirement, due to the severity and many symptoms of my fibromyalgia, since last April has not been all its cracked up to be. The process of filing for Social Security Disability and its resulting loss in income, as compared to the salary I had in the working world, has become a burden.

We had our house on the market from April to December before we could find a buyer. The idea was to down size and lower our living expenses [we now rent an apartment]. We were getting desperate near the end to sell. So not to lose our home through foreclosure we ended up selling our home at break-even after the mortgage company and the Realtors [thankfully they were personal friends of ours] worked out a deal to accept the buyer's offer even though it was for an amount less than what we owed on the house.

Over the last eight years or so, we had to use a great portion of the equity that built up on the home and a good amount of my 401k monies, to help us get through my wife Nancy's many surgeries for her bouts with colon, pancreatic and lung cancers and her constant need for expensive supplies to make her life livable.

Although she is currently cancer free, she has an enormous amount of physical problems because of those surgeries and treatments. Even though she has been able to continue to work, it has been very hard on her, and it is looking more and more like her going out on retirement due to her physical health is becoming a reality. I turned 59 this past December and Nancy turned 58.

When this happens as I expect it to, it will increase our financial burden even more to try to make ends meet and take care of our financial obligations. Once Nancy retires, we will lose the great health coverage she had at her work on both of us. We will then be dependent on Social Security, only when we are eligible for it to kick in.

It is somewhat ironic. I have always urged my readers and friends with fibromyalgia to, no matter how bleak things seem to be, to keep the "old chin" up. Now I face each new day wondering how I can possibly keep my own "chin up", when I don't see a light at the end of the tunnel.

Long gone are my dreams of a good retirement, getting to finally travel and do things we could not do when bringing up our two great children [Rachel is getting married this October], running our family and home and keeping our integrity.

Sometimes, I even find it hard to accept the promises of God and Jesus, about the outcome for the believer.

I am thankful that the Licensed Clinical Social Worker [Therapist] and the doctor I have been seeing have been helping me to keep it together and not succumb to my depression. I just don't know how much longer this can continue.

You, my friends and readers are also a reason for concern. I have poured time, money and heart into the Managing My Fibromyalgia website and related forum out of my love and concern for the many sufferers of FM. I have always had the burden to let others know they are not alone in the nightmare of fibromyalgia, as I once felt alone and bewildered, and that there are some things we do for ourselves to lessen its hold on our lives.

The above mentioned burden for the sufferers of fibromyalgia was the genesis of my Web site and Forum.

Now it has become more and more likely that I might not be able to continue this outreach as I had planned, due to Nancy's and my increasing financial hardship. I pray we can eke out the finances to continue. It just doesn't look good.

Do I at times get mad with God and our circumstances? You bet I do! After all, I am human.

I will do my best to keep my "chin up". I just don't know how successful I will be.

February 2007

Sometimes its easy for someone like me, who has been dealing so long with the symptoms of Fibromyalgia, to forget that there are people, who are starting new everyday, dealing with this beast. There are many who have experienced it only for a couple of years. I am always amazed when I come across a "fibro" newbie who gains quickly a knowledgeable insight into this disorder and other chronic illnesses and their effect on the lives of the sufferers.

I have had correspondence with such a person, who happens to be a writer, diagnosed as having Fibromyalgia, in late 2005. This young lady, Kimberley Linstruth-Beckom, has written and is in the process of writing books about her experiences with Fibromyalgia.

She decided that she wasn't going to let that stop her from writing so she published two full length books in 2006, one on poetry and the other on this fairly new syndrome that plagues 3-6 million Americans today. The Fibro Hand, is an intimate look into the author's life with Fibromyalgia and how she has learned to make her hand she was dealt in life be a winning one.

Kimberley's current project is another inspirational book dealing with Fibromyalgia and sexual intimacy with your partner after diagnoses.How does one stay intimate when Fibromyalgia and sex can be a pain in the neck? This new book will explore this topic, as well as, Kimberley's own thoughts on intimacy with Fibro, and how both the sufferer and the non sufferer of this chronic disease can be intimate again after diagnoses.

I invite you and recommend you to visit her Website, Kimberley Linstruth-Beckom.Com to find out more.

January 2007   Once again I am guilty of letting too much time pass from my last entry in October 2006. I have been procrastinating more than ever with it being increasingly hard for me to keep my concentration level and to put my thoughts together and down into written form. I have continuing problems with my short term memory, to add injury to insult.

My wife and I finally had a buyer for our house in mid-December in our attempt to downsize. The house which we loved became a burden due to maintenance [I am not able anymore to do many of the physical chores that go with maintaining a single family home and it's property]. Besides, it was too much house for Nancy and me alone and Nancy needed to cut down her major commute to Old Town Alexandria to work.

The move was quite stressful due to having to agree to close onDecember 20th, which left us a week and a half to find a new place to live, move our belongings, give away or discard many years accumulation of stuff so we could fit everything in a two bedroom apartment. This stress left me in a lot of physical pain and an emotional wreck.

The medical professionals I see are now suggesting I find a doctor or clinic that can test me for onset dementia due to my memory and concentration problems along with my volatile emotions. It's hard for me to understand how a man of my age has so much of a problem of controlling my emotions. Sometimes the littlest of provocations causes me feelings of remorse and to break down weeping uncontrollably.

I am seeing a different doctor for my pain management now. Myfamily doctor who has been helping me with pain control for many years has gotten caught up in a narcotic audit and can not prescribe any narcotic type medications until the issue is finalized. He's a good man and a very empathetic doctor. I hope this gets cleared up in his favor.

I still do not take any prescribed pain medication other then aprescription for Darvocet with a allowance of use no more than three time a day. This is fine with me, as I do not want to go through the challenge I had over a year ago of coming off strong pain meds that were becoming less and less effective in controlling my chronic pain and fatigue.

Quite frankly, the Darvocet does not work very well in controlling my pain, but I do not want to take anything stronger at this time. I am scheduled to see the pain management doctor on the 26th and will know better at that time what his recommendations will be. After my last visit to him, extensive blood work was done and some pictures taken of my lower spine and pelvic area. He should have the results when I see him.

I hadn't had these tests done in some time, so he wanted to start at a base point by having these tests done on me as a precaution to rule out any abnormalities.

I'll let you know the outcome of my visit in my next entry. At times I have a bad time following my own advice; anyway, keep your chins up.

October 2006 I'm back. I must apologize for allowing so much time to pass since my last post. As I had previously mentioned, I was waiting, not wanting to influence in any way, my process of applying for SSD. If you recall, I finally had to stop my regular work this past April 18 2006 at the age of 58, based on the recommendations of the medical professionals I have been seeing for the last twelve months or so.

Not only that, but it has become increasingly difficult for me to put the words and thoughts together allowing me to properly express my thoughts and feelings.

I have often wondered how anyone who is ill and is having trouble functioning each and everyday, is expected by the Social Security Administration or anyone else, to be able to gather and process all the required paperwork and information needed to process their application for assistance on schedule. I know, based on how I feel, how difficult it would be for me to focus without assistance.

We are not all blessed to have the support and assistance of a friend or loved one as an advocate to help us through the application process. If you do fall into this category, I am here to tell you that you can obtain the services of a professional at a very reasonable cost.

I decided to use a company that had been recommended by contributors to the Managing My Fibromyalgia Forum©. The company's name is Allsup Inc. They handled almost all of the application process and about the hardest thing was filling out some paperwork and visiting the doctor that Social Security chose to examine me. Allsup paid for everything during the process and even included post paid envelopes on any mailing between myself and Allsup Inc.

Let me give you some background on them. This is my testimonial to their organization. I receive nothing for this recommendation and testimonial.

Allsup gets what you’re going through. They understand the many challenges which accompany a mental and physical disability. With all the worries and stresses that your condition brings, you can sleep easy knowing that Allsup will take care of getting the Social Security disability you deserve. There 97% success rate is proof of that.

Allsup gets how the system works. Over 20 years of experience has given them the knowledge to successfully streamline and navigate the disability process. The reason for their effectiveness? They specialize in only Social Security disability services.

Allsup gets what you deserve. Whether you've been denied Social Security disability, or you're applying for the first time, they get you what you're entitled to. As the nation’s premier Social Security disability claim services company, they’ve obtained more than $1.2 billion in Social Security and Medicare payments for their tens of thousands of disabled clients.

and here's some more information from the Allsup Inc. Web site.

If you're thinking about taking on the Social Security Administration alone, get ready for a long fight - 60% of all initial claims are denied.

Thousands of disabled individuals who have represented themselves have struggled with confusing forms, busy SSA telephones and months of uncertainty about the status of their claims. Unfortunately, some claimants never live long enough to collect their benefits.

- Allsup's 97 percent award rate far exceeds the national average of those applying without professional representation.

- Allsup's expert staff has accumulated hundreds of years of experience in working and dealing with the Social Security Administration.

- A single point of contact will handle your claim at each level. Allsup will keep you informed of the progress of your claim and expedite your award and Medicare entitlement.

- Allsup Inc.completes all Social Security forms for you by phone and mail. They gather relevant medical records and documents to simplify the application process.

- Allsup's representatives handle only Social Security disability claims, unlike attorneys who typically don't specialize in this field.

- Eight out of every ten of Allsup's awards are obtained without the need to see a judge, which allows the claimant to stay at home.

- Allsup Inc. only charges a fee if your claim is approved. They do not require any up-front charges.

You can visit the Allsup Inc. Web site today and fill out the form and submit it for a free consultation. You have absolutely nothing to lose.

July 2006 Hello everyone. I am sorry that I have left so much time pass from my last posting. It seems as hard as I try to keep up, my lack of focus and concentration kicks in, tremendously putting a hurt on my productivity. I find it quite troubling knowing that this beast [fibromyalgia] has not only taken away my ability to continue in the every day work a day world and not allowed me to keep somewhat physically active, now it even has dampened my ability to be productive at the computer.

I was asked by my medical professional to stop work and retire due to my poor health which I did on April 18, 2006. You would think this would give me a great more free time to work on my Web development projects, which I love doing, but alas, my poor ability to concentrate and focus has not given me any advantage in doing so.

I am still in the process of trying to obtain SSI. The process seems long and tedious, but it is on schedule. As I said before, as soon as I know the out come, I will fill everyone in on the details of how it went and the name of the group that is helping me with the process.

Every so often the participants in the Managing My Fibromyalgia Forum© have been referred to a Physician Patient Assessment Form by Crazee8 that has been helpful to those having to deal on there own with Social Security in applying for SSI benefits. Every so often the host company of the forum purges out older posts without notifying me and needless to say they purged the post containing the questionnaire. I went ahead and posted it again at the forum and I am going to post a copy of it here so that it may be available to all who will use this in conjunction with their doctors.

TL:Fibromyalgia Doctor's Assessment Form
Original Source Devin Starlanyl
devstar@EMPATH.WIN.NET
Original Date: December, 1995
Copyright Restrictions: Copyable with attribution

Thisquestionnaire may be used by your doctor to assess your condition andfunctional impairment.

Fibromyalgia Residual Functional Questionnaire [modified from theFibromyalgia Impact Assessment Form
developed by Mason,J Silverman,SL
Weaver, AL et al, (Arthritis Care Res. 4:523, 1991)]

To:____________________

Re:____________________ (name of patient)

_________________________(Social Security Number)

Please answer the following questions concerning your patient'simpairments:

1. Nature, frequency and length of contact:________________________________________________

2. Does your patient meet the American Rheumatological criteria forFibromyalgia? ____Yes ____No

3. List any other diagnosed impairments:_________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________

4. Prognosis:______________________________________________________________________

5. Have your patient's impairments lasted or can they be expected tolast at least 12 months? ___Yes ___No

6. Identify the clinical findings, laboratory and test results whichshow your patient's medical impairments:________________________________________________________________________________
________________________________________________________________________________

7. Identify all of your patient's symptoms:

_____Multiple tender points........._____Numbness and tingling

_____Nonrestorative sleep ........ _____Sicca symptoms

_____Chronic fatigue ................._____Raynaud's phenomenon

_____Morning stiffness ............. _____Dysmenorrhea

_____Subjective swelling ......... _____Anxiety

_____Irritable Bowel Syndrome.... _____Panic Attacks

_____Depression .................. ..._____Frequent severe headaches

_____Mitral Valve Prolapse......_____Female Urethral Syndrome

_____Hypothyroidism ..............._____Premenstrual Syndrome

_____Vestibular Dysfunction .._____Carpal Tunnel Syndrome

_____Incoordination ............... _____Chronic Fatigue Syndrome

_____Cognitive Impairment ...._____TMJ Dysfunction

_____Multiple Trigger Points .._____Myofascial Pain Syndrome

8. If your patient has pain:

a) Identify the location of pain, including, where appropriate,an indication of right or
left side orbilateral areas affected:

___Lumbosacralspine ___Cervicalspine ___Thoracicspine ___Chest

.....................................Right.......Left.......Bilateral

___Shoulders..................___.........___.........____

___Hands/fingers...........___.........___.........____

___Hips...........................___.........___.........____

___Legs...........................___.........___.........____

___knees/ankles/feet....___.........___.........____

b) Describethe nature, frequency, and severity of your patient's pain:______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________

c) Identify any factors that precipitate pain:

___Changing weather ____Fatigue ____Movement/overuse

____Stress ____Hormonal changes ____Cold ____Heat

____Humidity ____Static position _____Allergy ___ Other

___________________________________________________________
9. Is your patient a malingerer? ___Yes ___No

10. Do emotional factors contribute to the severity of yourpatient'ssymptoms
and functional limitations? ___Yes ___No

11. Are your patient's physical impairments plus any emotionalimpairments reasonably consistent with symptoms and functional limitations described in this evaluation? ___Yes ___No

12. How often is your patient's experience of pain sufficiently severeto interfere with attention and
concentration?

___Never ___Seldom ___Often ___Frequently ___Constantly

13. To what degree is your patient limited in the ability to deal withwork stress?

___No limitation ___Slightlimitation ____Moderate limitation
___Marked limitation ___Severe limitation

14. Identify the side effects of any medication which may haveimplications for working,
e.g. dizziness, drowsiness, stomach upset, etc:_____________________________________________________________________________
_____________________________________________________________________________

15. As a result of your patient's impairments, estimate your patients'sfunctional limitations
if your patient were placed in a competitive work situation:

a) How many city blocks can your patient walk without restor severe pain? ________Comment____________________________________________________________

b) Please circle the hours and/or minutes that yourpatient can continually sit and stand at one time:

Sit.........................Stand/Walk

___............... ___Less than 2 hours

___............... ___About 2 hours

___............... ___About 4 hours

___............... ___ Atleast 6 hours