Pain Management -- Is it possible? I could really use a little help

[thester6474]

For the last two years I have been experiencig major health problems.  In January of 2006, I started having these tingling sensations in my right leg.  My leg would also feel as though it was asleep, at first, this would occur on a daily basis and last for an hour or two.  This continued throughout the rest of January and most of February.  In February the symptoms worsened, it felt like it was asleep all day, every day.  Unsure what could be causing this, I made a trip to my PCP.  He began to check my ability to feel sensations by poking me with his medical Q-tip (one side sharp, the other flat and dull).  On the right side I was unable to distinguish between the two items, and had a little difficulty on my right side (very slightly though).  He immediately sent me to a Neurologist, afraid that I may have had MS (Multiple Sclerosis or SLE (Systemic Lupus).

To make a long story short here are my symptoms:

*Burning pain (in muscles) – moderate to severe, lately severe
*Stiffness          *Swelling            *Fatigue         *Malaise        *Depression           *Headaches *Irritability
*Anxiousness    *Weakness       *Urinary Retention
*Tingling Sensations (allodynias)  – for example during bathing, walking, sitting...anytime my leg is near movement or I put pressure on it, worse with my right side, and also present in my head.
*Major Cramps and Spasms
*Dysesthia – I can get cut, scratched etc, and not feel any pain, that is unless I see it
*Chronic Urinary Tract Infections
*Back pain with movement                     *Extreme fatigue in muscles & extremities
*Decreased memory, coordination, judgment & attention span
*Difficulty walking, esp. for more than 15 to 20 feet
*Light & Heat Sensitivity (Esp. Sun) *Increased Sensitivity to touch
*Mouth ulcers                                            *Inability to handle stress (brings on or worsens symptoms)
*Hyperreflexic Reflexes                              *Abnormal Babinski Reflex
*Body can feel heat or burning without any apparent heat near body,
*Extra tension in arms and legs with usage  * chronic indigestion
*Heaviness in the trunk of my back.             *Decreased Muscular Control
*Tachycardia                                             *Chronic Maxillary Sinusitis
*Extreme burning pain in chest cavity

A year ago my PCP checked my reflexes and my ability to feel sensations again.  This time he  noticed in one of my knees I had hyperreflexia, in the other I believe he said hyporeflexia..When checking the reflexes of my elbow, he noticed that one hand moved slightly (the thumb did not), and the other one did not. He also noted an abnormal Babinski Reflex in my right leg only...T he also took something (I really cannot remember what it was) and stuck me several times, he wanted me to nod when I felt it...In some areas I couldn't feel it at all, he actually had to tell me when he was sticking me (he said he literally was piercing my skin), in other areas I barely felt it, and in others I clearly felt it...He said that it was definetly lateralized, but was still unsure what the culprit could be.

In the last two years I have been diagnosed with Fibromyalgia, Hypermobility Syndrome, Myoclonus, Neuropathy, Cervical Spinal Stenosis, Early Mild Disc Degenerative Disease, Early Mild Disc Desiccation, Kyphosis, Scoliosis, Osteopenia, & a B-12/Iron Deficiency, Anemia, Intractable Migraines, Tension Headaches, Anxiety Disorder, Chronic Rhinitis, Displacement of Lumbar Intervetable Disc without Myelopathy, Neurasthenia, and Partial Epilepsy.

Curent medications are
Naproxen 2 -- 500 mg tablets daily
Corgard 1 – 40 mg tablet daily
Phenergan 1 – 25 mg tablet every 4 hours as needed for nausea
Compazine 1 -- 10 mg daily
Nortriptyline 3 – 25 mg tablets at night
Provigil 2 – 200 mg tablet daily
Zanaflex 8 – 4 mg tablets daily
Lasix 1 – 40 mg tablet daily
Potassium 1 – 10 meq tablet twice daily
Tranxene 1 – 3.75 mg three times daily as needed for anxiety
Zyrtec 1 – 10 mg tablet daily
Skelaxin 1 – 800 mg tablet three times daily
Lortab (Hydrocodone /APAP) 1 (5 /500 mg) tablet every 4 hours as needed
Intramuscular B-12 Once Monthly
Maxalt 1 -- 10 mg tablet as needed
Medrol Dos pack -- (only used when my migraines begin coming as clusters -- has me on a maintenance dose with refills available at pharmacy)
Lortab 1 -- 5/500 mg tablet needed for pain
I have also been prescribed a TENS unit by Empi, Pool Therapy and complete Physical Therapy.  I use the TENS unit religiously. It helps somewhat, not as much as I hoped.

Because of recent bloodwork (CMP, CBC) and UAs, my Rheumatologist has decided that it may be necessary to begin testing for Systemic Lupus again.  

My questions are as follows:

What is Neurasthenia, on June 25th of this year, my doctor diagnosed me with this?  It is really hard to find information on this condition, it seems as though it is not used very often in modern medicine.

What conditions could be causing some of these issues?  My Pain Management Specialist agreed with all my current diagnoses after reviewing my medical history supplied by my other physicians, but said that she believes more conditions and diseases are present.

Also could exposure to excessive mold and mildew cause some of my symptoms and or conditions?  I began working at our local school three years ago, and began staying sick from colds, sinus infections, bronchitis, pneumonitis, and mononucleosis.

My Neurologist had me doing lots of different tests, checking balance, my reflexes while I sat up, and my reflexes while I laid down. Noticing that I was unable to feel when he would hit my knee, legs while trying to get a reflex. He also noticed that I had a positive Babinski reflex only on my right side. My General Practitioner administered the same test and got the same results. WHAT IS THE IMPORTANCE OF ME HAVING THAT REFLEX?

I was also diagnosed with Lyme Disease in January of this year, after a year of constant suffering.  At onset the yme Disease had already causd some Neurological issues, according to my doctors.  I am barely able to touch my right leg and foot, without a harsh electrical like sensation racing up my leg.  Do you think this could be reversed?  Also over the last year, For the past year I have suffered from a burning pain in my chest cavity, scared of what he might tell me, I have yet to divulge that information.  At my last two appointments he noticed that not only did my pulse stay above 115 with medication, but he also noticed a weird sound or rattling in my chest.  Could this be serious?

Thanks to all of you that respond to this message.  I am in desperate need for advice from either other sufferers or members of the medical community.

[thester6474]

Hi, thanks for the response.  Shortly after onset of the symptoms my pulse shot up, even before any medications had been prescribed.  I take the compazine along with the Maxalt, only when the Migraines cause nausea.  I take the Phenergan the rest of the time.  I hav given my Neuro way too many chances to redeem himself.  It is so serious that even my PCP completes on how stupid he is. He has expressed several times that he does not want me to see him anymore, and that he refuses to anyone else to see him.  That is when he referred me to my second Neuro, which at first I felt he was on my side, that is untl my last appointment.  Back in January of last year after being told by my Rheumatologist that I had Myoclonus and Neuropathy on top of the apparent Rheumatic issues, I asked his opinion, just for clarification.  I like for all of my doctors to be on the same page.  Instead of saying that he believed I did as well, he got offended, however in his notes to my Rheumatologit  he stated he felt these diagnoses were pretty accurate.  He told me that he would really look at Duke or Emory, saying that the Neurologists here are not suited to take care of a person with my magnitude of syndromes and diseases. He also said if we were able to figure out anything else, to come back and see him.  A few weeks later, my PCP performed labs for Lyme Disease, and said that I definetly suffered from it after the results came in.  He also said that since the first symptoms of the diease were Neurological, I needed to get back to my Neurologist.  So immediately I called his office and scheduled an appointment for a two weeks later.  Once I got there, I had to wait in the room for an hour and a half before he arrived at the office.  Once he got to the door and looked at my chart, he commented to his nurse, why is she here.  He then came in the room with a snooty attitude stating that I needed to see an Infectious Disease Doctor and so on.  His tone of voice was so rash and ugly, like I was wasting his time.  I was seconds away from walking out when he said he was about to go to his office next door and call my PCP, to wait and he would be back.  A minute later he sent his nurse in and told me I could leave.  At that time I was already depressed, and I mean very depressed, so this sent me over the edge.  I left that doctor's office crying, I couldn't find my way out of the parking lot, and it was a small densely populated area.  From that day forth I vowed to never see him again no matter how sick I may get.  This makes me fearful at the thought of seeing a new doctor, they can be total butts.  But, I am thinking in a few minutes I will either call or text my PCP and ask him to start the referral process.  But I don't really know if I have the gumption to see a new one.  If only they could see how it felt to live in my shoes for jus 5 minutes, they would probably be more undertanding and caring.

[Mollyrae]

Hello Thester.
First I want to say that I'm sorry for the constant misery you suffer day in and out. You certianly have alot going on for such a young person. With all the medications you take, is it possible that it could elevate your heart rate? Sometimes when a person takes a multitude of meds like you, it can lead to medical issues like high BP or heart rate. A while back I was Orthostatic (blood pressure rising and falling when sitting to standing) and the cause was one of the medications I had been taking. After stopping the med I no longer was Orthostatic. You also mentioned that you take both Phenegran and Compazine. They are both for nausea. Are you taking them at the same time? I'm wondering because maybe it's possible that your taking too much medication that are ment to do the samething. Does the same Doctor prescribe all of these meds? My advise would be to have a Medication evaluation. It might help some of the stuff going on in your system.
I really don't have any more advise to give other than please take care and like Tuck said, keep us informed.
Mollyrae

[Tuckamore]

Good Morning Thester,

You can feel free to send me a personal message if you would like to on my profile page. If you click on my name it will take you there.

I have a long standing belief that if your physician does not do the job you think he should do than to put it bluntly, you fire him. If you hired a plumber because you had a leaky sink and after the plumber completed the job your sink still leaked what would you do? You may give him another chance to repair it (non charge) but if he didn't I hope you would fire him. In my humble opinion physician are no different than plumber...or carpenters...etc. They all work for us, we hire them and pay them. They should do the job to the best of their ability. And maybe your neuro has done the job to the best of his ability but it is not to your satisfaction that it is time to move on. Maybe you need physicians that will think "out of the box."  

You present a very complicated medical case. If you feel better I do also. I can never see a FP physician. I have too many symptoms/systems involved. I see a DO but she specializes in Internal Medicine. So you need to select the physician that is right for you. It sounds like your PCP is wonderful. Be sure that the specialists are also.

You know your body better than anyone else but it will take a multidisiplinary team of great physicians to get to the root of your medical issues. If you think you will be better off at Duke University than I would encourage you to get an appointment there. Good luck to you. And keep me posted. And as always, Take Care, Tuck

[thester6474]

I looked on MedlinePlus to see what the difference are in Tonic Clonic Seizures and Grand Mal, I see they are the same thing.  I remember my mom saying that the type I have are Grand Mal.  But the last one I had been months before the Babinski Reflex was found.  I am not really sure of the exact month my PCP noticed it, because I had been tested for it several times before, and it wasn't present (by both Neurologist and PCP).  Then a few months later my Neurologist decided to test again and noticed it.

[thester6474]

Hi, there is no difference with my help.  I had an appointment with my primary care physician Wednesday, I had made it the previous week to get medication refills.  I figure if he has to sit down and write out all the prescriptions, he should get paid to do it, he is a wonderful doctor and person.  But unfortunately for the last month and a half I have been having major sore throats and migraines, sinus congestion.  Last Saturday, my throat got to the point I could not swallow and could not talk above a whisper.  He told me that he doesn't know how I make it from day to day, not that I am not like most of his patients.  That I just take life in stride and don't complain, if he only knew, I complain just not out loud.  He says that he would be crying if he had to go through what I do, looking at all my medical records, medicines and symptoms.  Like I told him, if I didn't have work, I would be a complete basketcase.  I was all last school year, I was on Medical Leave, until they could take me out the Special Education classroom I was in and put me in a Regular Education one.  My Pain Management I see when I feel like nothing else helps, she says though that she thinks when my immune system tried to fight off the Lyme Disease infection it started an autoimmune response.  She isn't sure which one though, all of the symptoms are pretty universal.  My Rheumatologist says that he is gonna watch my laboratory testing for the next few months, and if they continue the way they are he is gonna start testing for Lupus again.  He also states that most of my problems are Neurological, despite the fact I have Rheumatic and Orthopaedic problems.  But unfortunately my Neurologist is pigheaded, he feels that if he checks you once for something and it doesn't show anything, that he can automatically mark that off the list despite the worsening of symptoms (and the onset of new Neurological Symptoms.  It took him two year to start treating my Migraines with something other than just the Nortriptyline, even though he stated I suffered from these from day one.  I am at the point now where I just don't know where to go from here.  Do I go see a new Neurologist and risk wasting more money?  Do I continue to see the Neurologist that I am currently seeing and waste money?  Do I go see the Lyme Literate Doctor and try to treat it, even though no medical insurances cover Lyme Literate Doctors?  The first appointment alone is over $400 cash as well as lodging,gas and food, considering the closest one is almost 8 or 9 hours away.  Do I just continue to cope with the illnesses and hope they don't worsen?  Do I let the doctor's continue to medicate me to help mask the symptoms?  I am so frustrated, and I think that it is starting be evident in my manner.  My PCP contemplated raising my Anti-Depressant Dosage the other day.  My Pain Management Physician said I need something like Cymbalta to help as well, I told her I tried it before.  But I felt more depressed when I was on both Anti-Depressants, not to mention I gained almost 40 pounds in 3 months.  I don't know if I should consider going to Duke University or Emory, my PCP says that the doctors here do have the ability to pinpoint my conditions or take care of them either.  I just do not know, do you have any suggestions?  I know I have rattled on and on in this post, and I am sorry.  I just stay so bogged down with the burden of being ill with no hope of improving my health in the near future.

[Tuckamore]

Hi again,

It's good to hear from you again. How are you doing, any different?  A tonic clonic seizure just describes the type of seizure as there are many kinds/types caused by a variety of conditions.

Have you had a follow up with your physician? I have been wondering how you are doing. Please keep us posted and again, take care, Tuck

[thester6474]

I have had seizures before, last one being about a year and a half ago...I am not really sure what tonic clonic seizures are.  My tachycardia is an everyday problem, sometimes being as high as 130.  Sometimes even after taking my Corgard, it stays high.  Thanks to you both for responding, every comment helps.

[Tuckamore]

Hi Again,
I am sorry you are suffering from so many medical issues. You certainly must be frustrated and perplexed with all your medications and medical problems.  

Let me address your first question. It was first named in 1869. Many physicians beleive it is the same as today's Chronic Fatigue Syndrome. These names can be used interchangeably.  Neurasthenia is also known as: Primary Neurasthenia, Cardiac Neurosis, Chronic Asthenia, Da Costa's Syndrome, Effort Syndrome, Functional Cardiovascular Disease, Soldier's Heart and Subacute Asthenia.

The Babinski's reflex is a cardinal sign learned early in most medical professions education. In people more than 2 years old, the presence of a Babinski's reflex indicates damage to the nerve paths connecting the spinal cord and the brain (the corticospinal tract). Because this tract is right-sided and left-sided, a Babinski's reflex can occur on one side or on both sides. It can be permanent or temporary. The following are some conditions that are associated with a positive Babinski's Sign.

Generalized tonic-clonic seizure (there may be a temporary Babinski's reflex for a short time after a seizure)
Amyotrophic lateral sclerosis
Brain tumor (if it occurs in the corticospinal tract or the cerebellum)
Familial periodic paralysis       Friedreich's ataxia
Head injury                            Hepatic encephalopathy
Meningitis                              Multiple sclerosis
Pernicious anemia                  Poliomyelitis (some forms)
Rabies                                  Spinal cord injury or Tumor
Stroke                                   Syringomyelia
Tuberculosis (when it affects the spine)
OR NOT.

Some of Lyme's Disease effects can be reversed, some can not, often the symptoms can come and go or get better and worse. Sorry I don't have a more specific answer for you but there are so many variables.

A rattling in your chest can be a simple bronchitis. It may be due to your tachycardia, there are many things it could be.The important thing is that you inform your physician of this new symptom, burning in your chest cavity. It ma be a symptom that could confirm or eliminate a diagnosis. We need to be totally honest and upfront with our physicians in order for them to do the job we hire them to do. They require all parts of the puzzle.

Best of luck to you. We are here to support you and offer our suggestions. Please keep us updated and let us know how you are doing. Take Care, Tuck

[Cindee56]

I know it is difficult with these doctors.  I suffer from a lot of chronic pain and other problems, and I have the same issue.  Some of the doctors just don't want to talk and they just slap a diagnosis on you and hand you a prescription.  I'm still trying to find one who can really try to figure out what exactly is wrong with me and how to fix it.

However, I am 52 yrs. old and you are only 26.  I can't believe that, at your age, they expect you to just accept a bunch of different diagnoses and that's it.  A lot of my problems are age-related, but not all.  That's not true with you, so they have to come to a definite conclusion.  

Do you have anyone who could go to the doctor with you, a parent, boyfriend, friend.  I sometimes bring my husband with me when I feel the doctor isn't listening to me.  That can help.  Also, I always ask *how sure are you of this diagnosis, meaning like 50% sure, 75%, 100% whatever.  They usually answer that question.

I have a son who is 21 and he had a continuous problem with his shoulder and neck.  The doctors kept telling him he just hurt it working out, etc. and it would get better.  He went to a specialist, who said the same thing.  Finally, I went with him and I said to the orthopedic guy, * look he's 21 yrs old and this is affecting his life and he's in college and has a lot of work to do, so let's do whatever tests you have to do to find out exactly what it is.*  They did an MRI and found a torn ligament and some degeneration in his neck.  It wasn't great news, but at least we knew for sure what we were dealing with, and my son felt relieved at least to know this.

I'm just telling you this to let you know that you are not alone as far as having difficulties with doctors.  I hope you can get some help.  Let me know if you do.  

[thester6474]

I have always been the type to sit there and ask the doctor what I needed to know.  However in February I asked my second Neurologist some questions about my current diagnoses.  In reply he got a major attitude, I mean really ugly.  He asked he ladies right outside my exam room, why I was there if I didn't trust him.  My only concern was about some of the Neurological Diagnoses made my Rheumatologist.  Unsure of the legitimacy of these diagnoses I asked him what he thought.  I left his office crying, and have never seen this doctor again.  I was so hurt by him, I could not find my way out of his complex.  Because of this situation I do the least amount of talking possible, answering only the questions asked.

[Tuckamore]

Hello,
You ask some very good questions. It will take me a bit of time to reread through your post and do some research. I will get back to you later. I'm sorry I have an appointment I must keep but I will return.

Thanks for posting. I'll chat with you later. Take Care, Tuck

[Cindee56]

You are very young to have so many problems, but it's possible a lot of them are from the Lyme disease.  I never had it, but I know someone who did and there were many, many symptoms attributed to it.  

I do think you need to sit down with your doctor and ask all the questions you asked here.  Book extra time if you need it.  The doctor should certainly understand your concerns and be able to tell you what a lot of these things mean.

Good luck.