Completely Overwhelmed by Pain & Depression

[Rapha]

I'm in my late forties and have been a left leg AK (above-knee) amputee for almost 35 years. I've been successful in many ways over the years and am proud (maybe too proud?) of what I've been able to accomplish in my life, despite constant pain in my back, neck and shoulders since the mid-1980's.

The severe pain came because I completely overdid things with my prosthesis (artificial leg) in my early twenties. For several years in the mid-1980's I was a full-time school teacher, played in a very popular band on the weekends and taught private music lessons two evenings per week. During those years I repeatedly lifted a pair of 80-pound speakers and a 100-pound electric piano on and off stages and in and out of my vehicle, something no 135-pound man should be doing by himself let alone an AK amputee who lifted using his back instead of his knees/hips. I also played golf 3-5 times per week in the summers and would carry my own clubs rather than pay to rent a pull cart or a riding cart.

Foolishness? Absolutely. I'm sure much of this was due to pride. There seems to have been a self-destructive element to my behavior as well.

The pain got so bad by my third year of teaching that I missed about one out of every three days of school the first semester. I finally stopped wearing my leg, and missed just one or two days my final semester (I left teaching after that). But the damage was done. I had searing pain in my back, neck and shoulders that has never gone away, though it did subside some after a number of years of not wearing my prosthesis much.

After teaching I began working for a faith-based nonprofit organization which I have been with almost 25 years now. For a number of years I managed to travel the country as a performing musician despite the pain and the challenges of having one leg. I married, had children and eventually took a non-traveling position in the mid-1990's for family reasons.

To be honest, life has been very hard since losing my leg 35 years ago. I've probably made it look quite easy to the casual observer and even to those who are fairly close to me. But so much of it has been an act. I've been hiding from everyone just how much pain I've been in ever since the mid-1980's when I abused my body. I've always figured, "Who wants to be around a grump or a sourpuss?" and have pretended to be normal. Only my wife has known what a battle it has been. Pain truly can impede one's ability to focus on anything or anyone but one's self.

Back in 1986-1988, I had to sleep on the floor on my stomach because I could not sleep on a mattress or in any other sleeping position. I remember thinking to myself that I would never be the same again, that I had totally ruined my life, and that I had no idea how to carry on because the pain was so excruciating. But I also remember thinking "I have to go on... I can't just stop living." So I did keep going, to the best of my abilities. But honestly I feel like I've been in survival mode for the past 25 years at least.

The past five years I've been going downhill. It started with a pinched nerve in my neck. I was diagnosed in 2006 with C6 nerve root compression. Through physical therapy exercises I was able to stave off surgery for a couple of years, but in late 2008 I ended up having spinal fusion surgery on my neck (ACDF at C5-6). I've never recovered from that surgery.

Going into the surgery, a good friend of my wife's and mine strongly recommended I see a particular chiropractor she knew who is known to work miracles with his patients. I did go to see him twice just before my surgery and what he said made a lot of sense. I was pretty confident that he could help me avoid surgery. In fact I made a list of eight or nine reasons why it would make sense to wait one month to give this chiropractor a chance to bring some healing naturally to my bulging disc and pinched nerve.

But my second appointment with him was the evening right before my scheduled surgery, and when I told the wife later that night that I thought I should delay surgery for one month she was extremely angry with me for wanting to postpone it. The next morning when I went in for surgery, I told the neurosurgeon I wanted to wait one month. My wife, my friend who had recommended the chiropractor, and another friend were with me. When I informed the doctor of my desire to wait a month, my wife stormed out of the room with an extremely distraught look on her face. The second friend told me I needed to go through with the surgery for my wife's sake. The first friend who had recommended the chiropractor would have strongly encouraged me to wait the one month, but she saw how distraught my wife was, so she kept her lips sealed.

Against my better judgment for my physical health, I decided to sign the papers and have the surgery that day. And I've never recovered from it. I was off work for three months, tried to come back and could only work two hours per day before the pain would literally take me down. Eventually I went on short-term disability for two months. When I came off of disability, I was still only able to work one or two hours per day at most. By October 2009 I couldn't work at all, and that's pretty much where I've been ever since.

From October 2009 to March 2010, I was bedridden with severe pain and depression. Then I started PT and OT at a comprehensive pain clinic. The therapies plus the warmer weather and longer days helped me to be able to be out of bed and do a few things last summer. But as the days shortened and the weather cooled in October, I found myself once again in great pain and getting more deeply depressed.

[continued next post]

[Rapha]

One year ago I applied for Long-Term Disability with my employer. They wanted to wait until the pain clinic I was at had worked with me for awhile before ruling on whether I was disabled or not. In August 2010, the report from the pain clinic came back. The doctor writing the evaluation had told my wife and I in July 2010 that he would be recommending total disability for me. However, when he wrote the evaluation one month later, he did just the opposite. He recommended complete reinstatement to full-time work with minimal restrictions. This would be laughable if it weren't so sad. There was absolutely no way I could possibly work a 40 hour week, and both my wife and I knew that. And that was when I was at my best (the end of summer). Since the winter hit, I've been in worse pain and depression and am far less functional now than the limited functionality I regained last summer.

Fortunately my employer recognized that there was something terribly wrong with the situation. In fact, they have allowed me to reapply for total disability, which I just did last month. This time I have three doctors who are all recommending total disability. The last of the three has just mailed his paperwork to my employer. It will probably be about one month before I receive a decision from my employer regarding whether I will be put on full disability or not.

Last month, I went for neuropsychological testing. The results showed that I have no cognitive dysfunction (I was concerned about memory loss and other cognitive issues). The neuropsych said that he believes my dysfunction is being driven by the severe chronic pain. That is, the pain came first (1980's) then insomnia, then depression. That makes total sense to me.

I'm in more pain right now than at any other time in my life. About six or seven weeks ago I started weaning myself off of my medications. I was on Effexor as an AD, plus Ambien and Trazodone for sleep. (The Trazodone was making me so hungover that many days I was in bed 12-14 hours. And I wanted to transition from Effexor to a different AD.) Yes, I did this without oversight of a psychiatrist, and you can call me foolish to do such things, but since I'm not working right now I decided this would be an opportunity to give my body a rest from the meds and see what I'm like without them.

Well now I know. First, I stopped sleeping much at all, which I knew would happen. (I've needed medication for sleep for over 20 years now.) Second, I was definitely more alert and productive... for about two weeks. But then the insomnia caught up with me and the alertness got consumed by total exhaustion. I was awake but extremely tired and irritable almost all of the time. Third, I felt emotions more strongly than before, which was kind of a nice thing (I felt more like a human being again). Fourth, my pain levels increased significantly. Fifth, I become even more depressed.

Though I did feel better in some ways the first couple weeks of being off my meds, ultimately the negatives significantly outweighed the positives. So under the care of my new psychiatrist I've started on a different AD (Pamelor/nortriptyline) and have started taking Ambien again for sleep (but not Trazodone because of the hangover effect). I have a gut sense that the Pamelor isn't going to be as good for me as the Effexor was, and that I'll someday end up back on Effexor.

The biggest negative for me of my little "off-the-meds" experiment is definitely the pain. As I said a bit ago, my pain level is extremely high right now. In fact, it is so high that I don't really want to be alive. I'm not suicidal, trust me. If anything, I believe that since the neuropsych told me several weeks ago that the pain is driving everything, I'm actually coming to a more peaceful place of acceptance of my pain and limitations.

That said, I don't know what to do with myself. All I want is for the pain to go away, and barring a miracle that ain't happenin' anytime soon. I'm extremely limited in what I can do. I've recommitted to doing my PT exercises and I just started with an acupunturist three days ago. So far my pain is actually worse, but she's giving me six treatments over a two-week period, so I'll withhold judgment for a little bit longer.

A good massage always feels good, so perhaps I should try massage therapy. But I feel so hopeless right now. Everything is so painful that nothing is enjoyable anymore. And it seems like there in nothing anyone can do to really change things for me. So far none of the doctors I've seen have been able to reduce my pain. It's just killing me. It just doesn't seem right that I can feel this awful and I'm not even 50 years old yet.

My kids don't know what to do with me anymore because they never know if I'm going to be able to help them with something, take them somewhere, attend one of their activities, etc. or not. My wife hardly talks to me due to years of marital conflict. I feel extremely lonely much of the time. This past week I've realized that I've got to stay connected with people because if I don't, all I'm going to think about is me and my pain. So I'm redoubling my efforts to get out of the house and get with people when I can. And I'm writing on the forum here just to get things off my chest and stay connected.

I should mention that the recent testing I underwent diagnosed me as having Dysthymia, Major Depressive Disorder, and Dependent Personality Disorder with Avoidant tendencies.

Finally, I'm sure it has not helped that recently I lost someone very, very close to me. Plus, about a week ago two activities that I very much love (and can still actually do) have been taken away from me as well.

Thanks for reading all this. I don't really have any questions... just wanted to vent.

Peace,

---Rapha

[Guest SomethingOrOther]

Hi Rapha,

why have those activities you like been taken away? I'm sorry for your loss and that you're in so much pain now. It makes sense to me that everything else would probably get at least a bit better, if the pain was more manageable. Have you also seen a doctor who specialises in chronic pain, so that you can approach that directly? (Sorry, if you wrote that already, I don't remember)

I hope you can get more activities you like back into your life.

S.

[Rapha]

Hi Rapha,

why have those activities you like been taken away?

S.

It's something personal that I'd rather not go into.

Have you also seen a doctor who specialises in chronic pain, so that you can approach that directly? (Sorry, if you wrote that already, I don't remember)

S.

I saw one last year, and with the exception of physical and occupational therapy which helped some, nothing helped. No medications whether oral or intravenous or spinal injections helped at all.

I have been referred by my GP to another pain clinic which I will be going to soon.

I hope you can get more activities you like back into your life.

S.

Thank you for the well wishes. I hope so too.

---Rapha

[finding my way]

Does meditation or mindfulness training help at all? I'm so sorry for all this pain :)

Did you have any luck with seeing the new therapist, or did I miss that part?

[Rapha]

Does meditation or mindfulness training help at all? I'm so sorry for all this pain :)

I have not gone through mindfulness training, though it has been recommended to me. I suppose I should look into it.

Worship of God through music has been quite therapeutic for me the past month. I cry tears of pain and joy every time I worship. There seems to be some sort of catharsis happening. For the first time ever I seem to be completely acknowledging my pain (it's so consuming that I cannot ignore it). And I seem to be longing deeply for the day when all the pain and suffering ends.

Did you have any luck with seeing the new therapist, or did I miss that part?

I've seen him about half a dozen times now and I still like him! He's a good listener and has a heart of gold. He does not judge me but understands the struggles I go through. Since he prefers CBT, he does not like to wallow too long in the malaise. He wants me to look forward and take positive steps toward changing my life for the better. I like that attitude.

One of the biggest areas of struggle in my life is in my marriage. I have not felt loved by my wife for many years, and it has added to my discouragement and depression I'm sure. So we are starting to tackle that issue. My wife and I are going to start marriage counseling soon. We plan to choose a counselor sometime this coming week (we've inquired with several in the past couple weeks).

Peace,

---Rapha

[Athena]

Rapha,

I'm sorry to hear about all the pain you are having to endure. I tried to find a book I read on chronic pain, which helped me a lot, but it appears it did not survive my move last year. Anyway, a few thoughts stand out: 1) become an expert in chronic pain- research it, read books on it, try to diagnose what you have. Is it in the muscles, fascia, joints, a combination, other? 2) Seek out those practitioners that have had the best success rate with your type of pain. 3) try stuff you haven't tried before - change in diet, exercise, up the water intake, reduce the EMF pollution, reduce sugar, reduce processed foods and inflammatory foods and increase anti-inflammatory foods.

From the book I read, my best shot was to see a physiatrist, a naturopath, a kinesiologist, a psychotherapist and a biofeedback practitioner. Now, a year later, I have seen all but the last and I am about 80% better. (oh, and i also saw a shiatsu/accupuncture guy who has worked wonders). My guess is that since you appear to be under a lot of stress, you may have a lot of tense muscles that simply will not relax. If that is the case, you may want to read up on myofascial pain, physiatrists and trigger point injections.

One other thing - when I was on mirtazapine (tetracyclic antidepressant), I got pain I had never experienced before - I thought I was becoming arthritic. I felt like I had glue in my blood. That has gone away since being off that drug.

By the way, I took this course of action after undergoing CBT. I wrote down "I'll never get rid of my chronic pain". My therapist pointed out "You haven't tried EVERYTHING yet". so I set out to pretty much try everything - with pretty good results. I wish you the same success.

[finding my way]

Keep us posted, Rapha. There are some things yet to try, and if we can help support you, we are here!

[hatemeds]

Plus, about a week ago two activities that I very much love (and can still actually do) have been taken away from me as well.

This might seem like an insensitive query but dude, who in heck is taking away the things you love??? Who has so much power over you that they can take away such vital things in a time of dire need and depression? The fact that you have things that you love would seem to me to be so important when you are feeling so depressed. Why aren't you in charge of this - does this have anything to do with this diagnosis -

Dependent Personality Disorder with Avoidant tendencies.

???

I heard somewhere that depression and chronic pain share the same neural pathways/neurotransmitters. Probably why some of the ADs like Trazadone cover both. Are you conscious of the sequence pain-insomnia-depression or do you sometimes feel depressed and then experience the pain?

I have heard that some of the pain clinics are involved in groundbreaking research in this regard - have you been to any of these.

Hang in there brother - but dont let anyone take away what you love man - you need to claim back your rights! Carpe diem!

****

[hangingaround]

Hi Rapha,

I read a little bit on your other thread about your finding a new therapist, and then read this thread. You've been through a lot.

I hope you are able to find some relief in all this. It sounds like you've gotten some excellent hints here and I hope as you keep reaching you can at least find something that helps manage the pain....and thus the fatigue and depression.

I hope you are able to find some laughter along the way. Maybe to your list of books (if you are book reader and decide to take up researching all sorts of stuff about pain), you might find helpful some books by Norman Cousins. Two of his books that I found very helpful through my decades of chronic illness (including some pain, but not like yours) were The Anatomy of an Illness - from the perspective of the patient and Head First - the biology of hope.

Much hope....

~carol

[Rapha]

Hi Rapha,

why have those activities you like been taken away? I'm sorry for your loss and that you're in so much pain now. It makes sense to me that everything else would probably get at least a bit better, if the pain was more manageable. Have you also seen a doctor who specialises in chronic pain, so that you can approach that directly? (Sorry, if you wrote that already, I don't remember)

I hope you can get more activities you like back into your life.

S.

The activities taken away include 1.) playing piano on the worship team that leads our Christian congregation in worship on Sunday mornings at the church I have attended regularly for 18 years, plus 2.) assisting in worship leading at an interdenominational Tuesday evening worship and prayer service in the downtown area. Sadly, given my extreme levels of pain this past few weeks, these are about the only activities I am able to give God and His people right now. But they have been taken away due to behaviours deemed un-Christian. Oh, and 3.) use of a computer (I had to sneak on after midnight to type this entry). Also 4.) my cell phone messages were all read and are being loosely monitored now too.

This is all a result of my meeting someone on a mental health forum who has been extremely helpful in seeing the issues I'm dealing with from a perspective that I've not received prior. This person opened my eyes to many clinical issues that may have been at play, and highly encouraged me to seek treatment from competent medical professionals. I have done so, and have been given some really good help and some sensible diagnoses from the professionals I've gone to. Evidently my interaction with this person, a female, has been deemed inappropriate and crossing boundaries that a follower of Jesus would not cross, despite the incredible amount of help, hope and sanity that this person has helped preserve in me through what normally would have been a winter of total and complete shutdown for me (similar to my 5-month shutdown from 10/2009-3/2010).

Since mid-March, I've seen my family practice doctor, my physiatrist and my psychiatrist, all of whom have filled out a Physician's Statement for my Employer stating that at this time, I am totally disabled. If it were not for the wisdom and encouragement of my friend plus others on this board, I would have completely given up after the fiasco at MHG last fall.

This makes six or more doctors who over the past 24 months have all declared me to be totally diabled and unlikely to ever return to work:

March 2009 - Dr. Neil P

December 2009 - Dr. David P

March 2010 - Dr. Ari G and Dr. Dmitry A from MHG

March 2011 - Dr. Neil W

March 2011 - Dr. Brian F

April 2011 - Dr. Mark O

Despite this preponderance of medical support, my wife is considering taking a job "off staff" with another employer, which would effectively terminate both she and I as employees at our current non-profit including all our benefits as well. This means that the disability insurance that I qualify for based upon the recommendations of the three doctors over the past several weeks would be terminated and never able to be secured again if say, for example, the day after we terminated our current employment, I took a turn for the worse and was unable to even get out of bed for the rest of my life.

My three doctors have all said about the same thing. Major depressive disorder, dysthymia, and severe chronic pain make it impossible to carry out the duties and functions of my job. I also have a Personality Disorder with some secondary tendencies as well. All three said maximum improvement had not been reached and that they would hope to re-evaluate in 5-6 months. Two gave a prognosis of "guarded" while the other one gave a prognosis of "fair". I don't know what guarded means medically speaking.

I can tell you this. I finally decided to try something "alternative" a week-and-a-half ago that I've wondered about in recent years. I went to a Chinese acupuncturist. She came highly recommended by several people and has many positive tesimonials on her web site.

Unfortunately for me, my pain has only gotten worse. Much worse. I went through a lot of swelling after the first couple acupuncure treatments (Wed 3/30 and Fri 4/1). I'm not sure how acupuncture is supposed to work (need to read up on it on the web) but if it is suppose to open blocked channels of nerves so that our body communicates more clearly, that maybe for me it has opened up the blockages that are trying to communicate pain. Because I am in the worst pain of my life right now. Everything has become louder, sharper, deeper, hotter, more penetrating and debilitating than ever before. I can hardly stand it. I cannot do anything without severe pain. Walking, typing, even thinking, is taking me twice as long as usual due to the extremity of the pain felt. I almost want to die.

My wife and I must communicate to our employer's HR people Monday at 10:30AM EST (USA) whether we want to pursue the disability application which is now all been submitted or leave the organization so she can take this job she's been offered.

I can tell she's dead set on taking the job, while I think it is complete foolishnessness at this point not to take the disablity and see whether I can improve over the next six months or not. (We would also receive some back pay disability and several other moderate financial helps if I go on disability.) If I do not get better, then I would remain on disability. If I did get better, we could leave our employer, she could take a job at that time and I could hopefully do some piano teaching and playing for pay.

Any input you all might have would be so helpful to me. Thanks.

Peace,

---Rapha

[Guest SomethingOrOther]

Hi Rapha,

I'm afraid most of the input I have to offer wouldn't be helpful, because you wouldn't like the way I talk about the kind of people you're dealing with.

What does your wife think about the benefits you're losing?

I can see that you're short on time and that it's not cheap, but it might be worth consulting a lawyer who specialises in employment law or find other ressources that tell you what your options are. I know you said that you and your wife are bound in the same contract, and I can hardly imagine what the legal basis of this is, and especially what happens if you have differing opinions.

You could try to find out more about it by simply stating your different positions on monday and see what happens. Of course, the company would argue in it's own interest, though. I'd also think about setting a new date to give you time sorting out the legal aspects, if you feel that might be helpful.

S.

[hatemeds]

Dude

Your situation sounds like something out of the dark ages - I have to admit to being hugely surprised that that sort of thing even exists even more - it smacks of hypocrisy, judgementalism, conservative dictatorship.........and sheer bloody minded stupidity and insensitivity. Sorry Something or Other - I share your sentiments and hopefully am voicing some of your thoughts. I'm not known for holding back so please forgive me if I step on toes.

If you werent so caught up in it - I'd say get the hell away from all of it. I still dont understand why these people have such a hold over you - I mean who is doing all this monitoring and crap - sounds like bloody Nazi Germany!!!!

Why is your wife making all the decisions and if this is the norm - why doesnt she listen to what the medical professionals are spelling out. Bit confused by your reference to her leaving therefore you both lose out - how does this work?

It sounds like you are going through hell and I really feel for you but I think you need to dig deep brother and put a few people in there place!!

Strength to you Rapha!

****

[Leo1954]

This is the first time I can say finally say YOU HAVE GOT TO BE KIDDING! I totally agree with hatemeds what century are you living in? I having to be the opposite sex am ashamed that she can call herself a woman or a human being. I have no right saying she has some serious issues but, damn she does.

You are in a position where maybe physically you need her but, she is going to bring you down so far even though I think she already has. I don't get it?

The people you are dealing with are who? What are they are they in human form?

Like somethingorother said you might not like what she'd have to say because you probably wouldn't like it. Have you told your psych. that she is doing this to you? In a way she is emotionally abusing the disabled! Please she definitely needs some help every way and like now or yesterday!

[Rapha]

Thank you all for your honest opinions. I seem to be caught in a no-win situation here. I have no idea what will happen tomorrow. I am having some very bad thoughts and am wondering if I should go to the emergency room of the local hospital. I've been in bed for three days straight. The pain is intolerable. I just don't want to go on anymore. I've had too many years of this and I have absolutely nothing to look forward to any more other than the pain ending, which no one has been able to make happen.

---Rapha

[Rapha]

Bit confused by your reference to her leaving therefore you both lose out - how does this work?

****

We're basically hired as a couple, so she cannot leave the organization and me stay. We both would have to leave.

---R.

[Chisholm]

Rapha

Right now you have to do whatever it takes to keep you safe! If it means checking into the local hospital then that is what you have to do. Please put in an emergency call to your therapist as well -that is what he is there for.

Please dont give up Rapha - you have three beautiful children that count on you and you are going to have to dig deep. Fight for alll you are worth - everybody here at the forum thinks that you are worth plenty - even if you cant feel that yourself right now!

X

Chisholm

[Chisholm]

Let us know how you are doing Rapha and what happens at the meeting with your employer today.

We are here for you.

X

Chisholm

[hatemeds]

Hey I second that Rapha - let us know how you are doing dude - we are all worried about you? How did today go? I seriously think you need to have a long hard look at your marriage dude as well as the so called friends that want to punish you as you describe - its medieval!

Talk to us brother!

****

[Leo1954]

Rahpa

I was wondering how did things go for you today & did you call your therapist if you are at home or whenever you can get back on the forum we all want to know how did things go for you? I would like you to know that you are worthy of being born,being here.

You sound like you are a very good husband don't let her or any of those people

who claim to be your friends. Always think with friends like this who needs enemies!

I still say she should be ashamed to call herself a woman & wife. By the way how is she being a mother? How do your kids react or do they know exactly what is going on? I forgot if you said how old they were [sorry]

You hang in there I hate to even think of the physical pain you are going through. Also did you know emotional pain can & will cause physical pain to act up even more intense with what you already have going on with your body you need some kind of respite.

[Guest ASchwartz]

Hi Rapha,

I agree that your situation sounds awful. Your wife seems to be working against you. Why is that?

Based on what you have written, total disability seems to make sense, at least in my opinion. Constant pain like you have really makes it impossible to work.

By the way, it seems to me that your most serious diagnosis has to do with the pain and that the paint is a major cause of your problems. Who wouldn't be depressed with that much pain?

I wonder, given the state of your physical health, why have you been given those diagnoses: Major Depression, etc?

Please, let us know how things went for you?

Allan

[hatemeds]

Hey Rapha

Dont like that you've gone so quiet brother - where you at! We are all worried about you. I for one was thinking about your situ - ever heard of the word "codependence" - was wondering about your relationship with your wife?

How does she react to your "independence" - just curious brother?

Talk to us.......

***

[Guest SomethingOrOther]

I'd like to point out that I get the impression Rapha is being pressured to share negative opinions about his wife and friends here. I don't feel comfortable with this. (...)

Rapha, I hope this meeting went well and that the pain has become more managable, so that you can find things to look forward to. I think it's difficult to find them when you're in much pain, but there might be other places where you could volunteer or play piano, if this group doesn't change their opinions. Can you get more physical therapy to help with your pain?

Take care,

S.

[hatemeds]

All we're (incl the good doc) doing is voicing your own thoughts sister

I'm afraid most of the input I have to offer wouldn't be helpful, because you wouldn't like the way I talk about the kind of people you're dealing with.

but you're right us all expressing outrage is not helpful right now.

I have been worried about you brother - know that we all all here for you!

Let us know how you are when you are up to it......

****

[Guest ASchwartz]

Rapha,

I am also wondering how things went for you? and how things are for you at the moment?

Allan