Chronic Pain Support Group

Please bear with me... this is a long message but I severely need some advice & I have posted in a group for vertigo as well...:

How Does My Disability Affect Me?
The disabilities I would consider the worst are episodic recurrent vertigo and chronic pain, which just happen to play into anxiety with a panic disorder and agoraphobia for me. The vertigo has been progressive over the past 15 – 16 years. The chronic pain comes from multiple sources and used to be a lot worse, but currently I have found ways to live around the pain around half of the time. Unfortunately, even after coming so far as to walk without assistance between 2002 and 2006 or so, it also seems to have become progressively worse since then, but at a slower rate than the vertigo since 2003, especially with injuries from falling. I have changed my life, and the way I perform my activities of daily living accordingly, as to become as independent as possible. For example: When I am told that my home is arranged in an odd way, I respond that it is arranged with everything I need “in reach”. Over the years as I have been in physical therapy, the two issues actually seem to have switched places. My vertigo was much less consistent up to 2003 - 2004, but as the pain became more under control, the vertigo had gradually gotten worse, throughout my pregnancy, and worked its way to what I am learning to live with at this point in my life. I have a hard time walking a straight line, performing simple tasks at times, and I have stopped driving for over a year now. I used to have some warning time/I knew when a dizzy spell was coming. I don’t have a long enough warning to pull over anymore. I went off the road, and have not driven since. It is an emotional roller coaster. Not knowing why it happens is the most frightening part of this whole experience. Not giving up on an answer is the most important part. Living it is the most difficult part. My family’s love and understanding towards me is what keeps me going. I learned something very important from a man that I did homecare for10 – 15 years ago:

“Only those who quit trying, truly lose.”

I never know if I am going to have a day with no symptoms at all. When I do have symptoms, these are some examples (listed “least symptoms” to “greatest of symptoms”) of when I start having trouble performing throughout the day. A few of them, I have learned to compensate for (most the time) out of lack of option when it started to happen on a regular, spontaneous basis (on any given day).

Sometimes I have a recurring shift in vision to the right throughout the day. This is when I start to have trouble with activities such as walking, reading, judging distance so I can figure out if I am pouring coffee in the cup instead of the table for example. I have learned to compensate for the smaller shifts in vision and dizzy spells enough that I feel somewhat comfortable and safe outside my home, but not traveling alone. I have STRIDE Services for that reason.
Some days I will feel like my head may spin a few times per hour throughout the day (anywhere from 30 seconds to about 5 minutes at a time unexpectedly). Those are usually the days I will only go out in public if I have to or to hang out with a friend who understands just for the companionship.
I spend some days so consistently dizzy that I am nauseous and/or vomiting enough that I will not leave my home.
In addition I will, on average have one to three unexpected times a month, whether I am dizzy or not, that I may lose consciousness. There are times this loss of consciousness is accompanied by loss of bladder and/or bowel and/or vomiting. There is even one time I spent 36 hours in bed because I had knocked my phone off the charger and could not get to it. I have also woken up after passing out in multiple spots in my home (floor, couch, etc.) and was not in reach of my phone. I do try to keep it very near by the best I can. When feeling this way I do not leave my home.
There are days that am not even dizzy, and all of the sudden, I spontaneously have a severe attack that drops me unconscious with no warning at all. I have experienced a lot of falls. I get worse and worse at catching myself throughout the years. These spells scare me the most because if I am feeling ok, I do get out of the house and do as much as my body will let me, but, these are the most likely times for me to pass out in public.
One of the things I do kind of have in my control, is the nausea. I take two nausea medications religiously. I have one that I take three to four times a day, and, one that melts under my tongue for “breakthrough” nausea as needed. The very first thing I do when I wake up is to reach under my pillow and put a Zofran under my tongue so that I can keep my morning medications down. My gag reflex has gotten incredibly worse the longer I have had vomiting from the vertigo. Sometimes I start and I am unable to stop. If I have not kept enough liquids down for 72 hours, I have a plan in order, to go to my doctor or urgent care for an injection of both a nausea medication and an anti-inflammatory medication for pain to bypass my stomach so I can work up to eating again. Vomiting this hard for an extended period of time, on top of the pain I am already experiencing on a regular basis, is excruciatingly painful to endure up to 3-4 days after it is back under control.

Sometimes I have a recurring shift in vision to the right throughout the day. This is when I start to have trouble with activities such as walking, reading, judging distance so I can figure out if I am pouring coffee in the cup instead of the table for example. I have learned to compensate for the smaller shifts in vision and dizzy spells enough that I feel somewhat comfortable and safe outside my home, but not traveling alone. I have STRIDE Services for that reason.
Some days I will feel like my head may spin a few times per hour throughout the day (anywhere from 30 seconds to about 5 minutes at a time unexpectedly). Those are usually the days I will only go out in public if I have to or to hang out with a friend who understands just for the companionship.
I spend some days so consistently dizzy that I am nauseous and/or vomiting enough that I will not leave my home.
In addition I will, on average have one to three unexpected times a month, whether I am dizzy or not, that I may lose consciousness. There are times this loss of consciousness is accompanied by loss of bladder and/or bowel and/or vomiting. There is even one time I spent 36 hours in bed because I had knocked my phone off the charger and could not get to it. I have also woken up after passing out in multiple spots in my home (floor, couch, etc.) and was not in reach of my phone. I do try to keep it very near by the best I can. When feeling this way I do not leave my home.
There are days that am not even dizzy, and all of the sudden, I spontaneously have a severe attack that drops me unconscious with no warning at all. I have experienced a lot of falls. I get worse and worse at catching myself throughout the years. These spells scare me the most because if I am feeling ok, I do get out of the house and do as much as my body will let me, but, these are the most likely times for me to pass out in public.
One of the things I do kind of have in my control, is the nausea. I take two nausea medications religiously. I have one that I take three to four times a day, and, one that melts under my tongue for “breakthrough” nausea as needed. The very first thing I do when I wake up is to reach under my pillow and put a Zofran under my tongue so that I can keep my morning medications down. My gag reflex has gotten incredibly worse the longer I have had vomiting from the vertigo. Sometimes I start and I am unable to stop. If I have not kept enough liquids down for 72 hours, I have a plan in order, to go to my doctor or urgent care for an injection of both a nausea medication and an anti-inflammatory medication for pain to bypass my stomach so I can work up to eating again. Vomiting this hard for an extended period of time, on top of the pain I am already experiencing on a regular basis, is excruciatingly painful to endure up to 3-4 days after it is back under control.

to do so. I would have to find some financial assistance some how. Some of my greatest fears are:

Passing out in public and private due to vertigo, and not being able to call for help.
I feel at times I need balance support while getting out of bed in the morning whether it is from vertigo, pain, or both on any given day where I feel wobbly standing up to gain my balance or I am dizzy enough and just drop forward falling to the floor.
Waking up stuck in bed because the vertigo, pain, or both will not allow me to get up at all on any given day. (Note the time I spent 36 hours in bed because I knocked the phone off of the charger.)
I feel like I need assistance walking and traveling safely in and out of my home at many times. I currently use a regular cane, but with a red tip. The reasons for the red tip are so that I can keep myself walking in a straight line instead of constantly veering to the right, to help catch myself when I stumble from vertigo/muscle spasms/pain, (For instance my right hip buckles), and as much as I appreciate that people that are willing to reach out a helping hand, Good Samaritans will reach in front of me to help, when actually I need them to step aside, so I do not trip over them.
Not having a safe way to walk for exercise has resulted in a lot of weight gain. I would love to be able to walk for exercise again, and feel safe doing it. I say this because I have repetitively fallen and had to become creative with an exercise routine, at one time I fell off of an elliptical machine, twice off of an exercise bike, and three times I’ve fell off of a rowing machine. I got rid of all three machines after injuring myself, and resorted to walking for exercise. The only problem is I have passed out unexpectedly on multiple occasions while walking while feeling just fine, and I am afraid to go alone. This has been preventing me from a “regular” workout. I constantly seek for safe ways of exercising, or someone willing to accompany me in case of an episode.
All of the above reasons play as a factor to my panic disorder and agoraphobia. I am afraid to be alone on any given day, but I manage to “suck it up” and move on.

Multiple doctors and tests have still not found the source of these symptoms. I have seen multiple specialists, both here, and at the U of M Medical Center/Fairview in Minneapolis MN. I am running into a problem with my insurance not wanting to cover investigative procedures. No test that I have had done, aimed towards diagnosing this vertigo, has shown a result that would lead us to a definite diagnosis. I have finally accepted that I may have to just continue to live this way, and pray for a correct diagnosis.



The lawyer I spoke to is willing to take on the Second SSI application... but not bring me to federal court on my SSD because there is NO diagnosis for the "most debilitating" symptom". I have been advised, after fighting for 9 years, to drop my disability case and re-apply from the beginning. Should I?

I have multiple recognized diagnoses::
*Fibromyalgia at all points
*Degenerative disc disease (lumbar and thoracic spine)
*Chronic pain
*Anxiety with panic disorder and agoraphobia
*Possible PTSD (I don't understand why they say this...)

...unrecognized diagnoses:
*Other postablative hypothyroidism
*Eustachian tube dysfunction
*Physical deconditioning

...and unknown diagnoses:
*Unexplained reoccurring vertigo
*Nausea & vomiting
*Unexplained Syncope
*Other chronic pain including Hip/Enthesopathy of hip region, Neck, Shoulder, & Back caused by injuries from falling while dizzy/losing consciousness.

The "bitter sweet" short story is:
The management of my chronic pain has progressively improved, BUT, the recurring vertigo/nausea/vomiting/loss of consciousness had gotten way worse throughout the same time frame (2002 - 2008). The vertigo now seems to have leveled into a life that is difficult to manage over the past 6 years. I have been through physical therapy, chronic pain program, and Spine-X program, and I have been faithful in my physical therapy to the best of my ability, because it helps. Over the past 5-6 years, I have learned to manage my pain to the point where I can get through days when I am not overly dizzy to do "most" the things I need to do, and even sometimes things I "want" to do too. The nice thing about having success in pain management is that it benefits me most on those dizzy free days. Those are days I can feel capable of doing what I need to do... I still have a low to moderate amount of pain... but it IS everyday pain.

***BUT HERE IS THE MEDICAL CATCH 22***
*Even though the chronic pain has gotten better, I 16 years of recurring vertigo has progressively gotten worse.
*I lose consciousnesses 1-3 times a month
*I have various levels of vertigo, some that are tolerable, many that are not.
*I still have, however, about 2 days a week on average that I have no symptoms of the vertigo... the days I feel capable to accomplish things.

~The doctors have labeled this particular group of symptoms as:
"Unexplained reoccurring vertigo and/or nausea & vomiting, with occasional loss of consciousness."~


***HERE IS THE LEGAL CATCH 22***
*The lawyers I have spoken to will not take into consideration any "debilitating symptoms" that DO NOT have a name.
*My insurance does not cover anything that is considered "investigative procedures".
*The most terrifying part of this is that I don't know what it is.
*I can't get help because it does not have a name.
Posted on 04/15/12, 12:13 pm