Friday, October 3, 2008

A letter to SSDI from my doctor

My attorney requested a written narrative report from my doctor to support my claim for SSDI which is now in the reconsideration stage. My doctor sent me a draft of the letter but it didn't include the last paragraph which has depressed me to no end.

Here's a copy of the letter:

I have been treating ***** since April 18, 2008. She suffers from debilitating multi-system complaints that meet diagnostic criteria for Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). As you know, CFIDS is a legitimate medical condition, recognized by the CDC, that is unusual because its diagnosis does not depend upon objective laboratory or physical exam findings. The diagnosis is based entirely on subjective complaints, after excluding other recognized medical conditions. Of note, she has a medical history of hysterectomy, hay fever, and a past episode of adhesive capsulitis that she has recovered from. None of these medical conditions contribute to or cause her fatigue.

CDC Diagnostic Criteria for Chronic Faitgue and Immune Dysfunction Syndrome:

• Clinically evaluated, unexplained, persistent or relapsing fatigue new of definite onset; not relieved by rest; results in substantial loss of function of work, school, social or personal activities AND 4 of the following: (also, CBC, ESR, chemistry panel, TSH, etc must be normal)
o Self-reported impairment in short term memory or concentration
o Sore throat
o Tender cervical or axillary nodes
o Myalgia
o Multi-joint pain, no swelling or erythema
o HA of new pattern and severity
o Unrefreshing sleep
o Post-exertional malaise lasting greater than or equal to 24 h

She meets diagnostic criteria for CFIDS. The symptoms started in July 2007. She demonstrates absence of any other medical or psychological condition that could account for these symptoms (absence of hypothyroid, blood dyscrasias, normal CBC, ESR, chemistry panel, etc). She has profound disabling relapsing fatigue lasting > 6 months not relieved by rest. She has self-reported impaired memory, myalgias, headaches, unrefreshing sleep, post-exertional fatigue and malaise lasting more than 24 hours. She has intermittent sore throat, tender lymph nodes and joint pains.

Of note, she does have some positive bands on Western Blot for borrelia but does not meet case definition for Lyme. She is undergoing empiric treatment for babesia and lyme, though as stated above, lab evidence does not support this diagnosis.

She has received nutritional and graded exercise counseling and is following through on treatment recommendations, though her clinical improvement has been minimal. She also has IgG antibody positivity to HHV-6 and EBV.

She must rest or sleep 19-22 hours per day because of the profound fatigue.

Functional Capacity:
Standing: less than 15 minutes at a time, limited by faitgue
Sitting: can sit for an hour at a time, limited by fatigue
Concentration: significantly impaired to a degree that would prevent desk work
Lifting, bending, pushing, pulling: cannot do any of these activities secondary to fatigue

Her prognosis is poor. CFIDS is a devastating illness that frequently lasts 10 or more years. However, some patients do recover sooner. She will continue treatment and we will follow her progress, hoping that she may recover in the next few years.

Please let me know if I can be of further assistance.



I have an appointment with him on Tuesday. I plan on asking him if he believes my prognosis is poor or if he wrote that because it would help my case. I'm trying to console myself that he wrote it to help my case though I know in my heart he's not the type of person to exagerrate things.

My lawyer thought it was a great letter. He and I don't have the same perspective though. I can't live like this for a few more years much less 10 or more. I don't know how some people do it.

Am I destined to end up alone in Section 8 housing or worse, a nursing home? The most horrible thing about this illness is it doesn't kill you quickly. It's a slow, slow death all the while watching from the sidelines as your life disappears before you as if some magic trick. I'd like to talk with the magician and let him/her know that I'm ready for the trick to be over.


  1. Hi there. Actually, you are still in the window where you have a good chance for recovery. Many people, if they are going to improve, will improve within the first 2-3 years of getting this stuff. There are nutritional supplements that you can take, and watch the exercise. Dr. Nancy Klimas said that CFIDS sufferers usually crash if they exercise more than 15 mins at a time, but they can do 5 mins of exercise and then rest 5 mins and then do another 5 mins of exercise, basically forever.

    My husband has CFIDS and he was not diagnosed with it until he had it for 10 years. He is now disabled from it and has been unable to work since 1999. He went on disability at a young age -- 36. Ths is a terrible, awful illness and my heart goes out to you. I hope you fel better soon.

  2. Don't let the prognosis get you down. The truth is that no one knows what will happen or what anyone's chances of recovery are.

    I've now had CFS for 6 years and am doing better than ever, thanks to anti-virals and low-dose naltrexone. And my treatment for a recent Lyme infection seems to have worked completely!

    Dr. Bell says that there is a greater chance of recovery for those who became ill suddenly and for those whose symptoms vary somewhat from day-to-day.

    You have a doctor who not only understands CFS but is also treating your underlying infections - that's a huge advantage. His letter was very well-written. I hope it helps you get SSDI...and I hope that you won't need it for very long!!

    Hang in there, listen to your body and rest proactively, and remember to take some time for yourself to have fun and enjoy your life!


  3. My partner has had this amd so many other conditions for, well, most her life--she is 52; I used to care for her but then I got MS, now old age has beaten us down (She got fibromyalgia about 15 years ago, so good sleep out of question), I worry every night---what will happen to us? She needs to quit working, go on SSDI, she is so exhausted, how will she do it? How will we live? (She has worked 20 yrs at a universiy) She has a great doctor(s), the drug don't help her every drug/treatment has a side effect her other conditions can't handle. I guess we can't know the future. Some nursing homes are not so bad. Life is a fickle creature.