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Chronic Pain blog by ezymel

Hi Tracy Lynn:

I realize what you have written is long ago and possibly you won't see this message. I don't know if you still are active here. This letter is also geared to many others who experience and feel the excruciating pain and I would like to share with you my story. Firstly, pain in itself is something everybody feels differently. It is very difficult to describe what chronic pain to many other people who do not know what it is. People think pain is pain and you will get over it! This is pure nonsense and unless they happen to have it. Everyone feels pain in their lives. It is also a warning sign that something that may have to be taken care of. When you break a leg, hurt your back, heavy excercise, and have surgical procedures, a fight, etc. you will feel the pain and it hurts. You can't wait to get relief by doctors prescribing pain medication for short term. It does help to alleviate the pain so you are able to do things to carry on your life. Physical therapy also helps to strenghthen muscles as well as heat, massage and meditation. There are so many variations, it is hard to describe it all. When you double up with pain which means to me that it is so severe, that you are not able to stand up, concentrate, and even sit down, then it is all out pain. Since there is a pain scale from 0 (no pain) to 10(excruciating pain) and everything in between, when you are asked to where you are what level, that is a good measurement tool. Doctors and nurses want to know this. If you are admitted in a hospital, you are asked what pain level you are at. Anytime you have surgery, this is asked of you. True, any type of surgery which even can be minor or major, generally you are fed by IV morphine or some other narcotic to reduce the pain so at least you are able to rest or sleep. This is generally the protocol depending upon what type of surgery you have. Usually you are on these IV meds for 24 to 32 hours and then you get oral medication for a few weeks until you need no more. It doesn't mean that afterwards that you will feel no pain. Even after several months you can feel some pain at times but it is reduced as time goes by. You carry on with your life and do what you are able to. Pain should never hold you back and make you feel like an invalid. Easy said than done. Look at a pregnant woman who is about to deliver. She feels the worst pain imaginable. It falls beyond the 10 level. Any woman will tell you that. Men generally never feel this kind of pain unless you are giving birth to a kidney stone and even if your gall bladder is so bad, the stones are telling you something. I never had a heart attack, thank GOD but I did have a hooked kidney stone tearing my uretha and the worst gall bladder attack that is even hard to describe. Definately, you end up in the ER and be admitted to have surgery. At least this was done in the day meaning that I am a much older person. Medical technology was still in the infant stages and hospital stays were much longer than todays 3 day stay. What I am trying to do is paint a picture before I go on with my story. I don't mean to bore you with so much detail but typing this is therapy for me. Of course you understand what I am sayng or you wouldn't be here. In no way am I suggesting that you don't know this because you do. Your all intelligent to know that.

Like I said I am an older person pushing 76 and I know what chronic pain is. How about if I tell you this started way over 20 years ago; in fact as early as me being 27 or 28 years old. I used to work in communications technology and my job was very diverse. One day I was on a scaffold in an auditorium about 30 to 40 feet high hanging speakers. When screwing the speakers on the ceiling, that is when Ifirst started to feel pain in my arms and couldn't turn the screwdriver. It was hard enough to reach up to the ceiling and felt like I was losing balance. As a matter of fact the scaffold did not really make it easy to reach the ceiling as it wasn't tall enough. I had to hold on the railing to keep from falling over. Imagne if you will, that standing on your toes trying to reach up with one hand. It was pretty hard for me. I finally did install the speakers but took me a long time. My confort level deminished as well as my confidence. You see, arthritis runs in my family and my father had it bad. He was an electrician by trade. Lets move up in time. About 20 years ago, I started to feel pain on my body and I couldn't shake it. Everywhere I touched, it hurt. I went to a doctor who was a rheumetologist and tested me by proding and poking varies pressure points and he said that it can be fibromyalgia., He prescribed Vicodin and have been on it until about a year or two ago as I had to be put on stronger narcotics which really didn't help much. Other meds were Oxicodone, morphine, Dilaudid, and duragesic patches. The best has been the good old Demerol but not used much today. I have been to several doctors who gave me trigger injections and me feeling like a pin cushion. I really hated that. It gave me some relief for about 2 or 3 hours until it wore off such as having a tooth pulled. This was the regimen that I endured for every two weeks. My blood work showed that my SED or sedimation rate was very high like 132. It prooved that I had inflammation. My doctor gave me low dosage Prednesone for a year and brought the SED rate down. Still I was experiencing lot of pain. I had all kinds of blood work and she was going to put me on Embrel. I didn't pursue it because it was expensive and insurance would only pay for a fraction of it. I would have to shell out at least $1000 a month. She then game me methotextrate which was very strong and generally prescribed for people who have autoimmune diseases such as HIV, cancer, etc. I got sick right away with nausea and general ill feeling and stopped it after a week. So now I supposedly had an autoimmune disease of what I did not know. I have been seeing this doctor for about 2 years and finally she wanted to put me on IV Remicade. Another potent medicine. It would have cost me a lot more than Embrel so I couldn't do it either. What doctors don't understand is that how expensive these medications are. There are really no generics. My doctor refused to treat me any further because I didn't follow what she was suggesting. Sometimes doctors seem to take it personally. A few years later, my pain was starting to increase and MRI's of my neck and back was taken and surgery was the only option to fix my bad discs in my vertebrae and fused my neck as the vertebrae needed fushion. Both surgeries were hard but the neck was the hardest for rehabilitation. Wearing a neck brace is no fun and I felt like one of these dogs who wear a collar to prevent them from scratching their wounds. The looks I got from people were really annoying and the kids came up to question me, "how come you are wearing these things and is this what you wear for Halloween?. They also would laugh and make fun. That didn't bother me as much because they are kids and kids are very inquisitive. You know that. But still I got looks from adults but they generally didn't give it much thought. Oh, how as human being are we subject to ridicule. Let them deal with these surgeries and see how much they feel. Now to continue on.....

I don't know how much I can write here as there may be a limit. Well, I will go on until I can't go on any more. :) After 2 back surgeries and a neck fushion, more things began to happen. My extremities were getting numb while standing and my balance veered. I then went to a Neurologist and I had more blood work, nerve conduction studies , EEG's, and MRI's. It was determined I had peripheral neuropathy as more complications. When moving from So CA to Las Vegas, NV, I had to continue with seeing specialists More MRI"S CAT scans and other tests were done. Heavier pain meds were prescribed like Oxicontin, Oxycodone, and Duragesic patches to help with my pain. It was determined that I had nerve damge and nerve degeneration exposing the nerves to the outside world. Right away I was sent to a Neurosurgeon and the only thing that came out of his mouth was Neck surgery. I said no, no, no. You are not operating on me. At my age, it could be serious and I would have to be in ICU for a day with a line in my neck. You know and I know that their is danger in that. He had nothing more to do with me. Yes, I had all these complications and none were specific. One Neurologist I went to gave me more tests and determined I had CIPD which is a bad disease and prescribed IV Gamma Gobulin which would have cost me $5,000 for the first 5 days. No way could I afford and that is even when the insurance would pay 33% of the cost. I was told I would have to be on it for 3 years and given once a month. Whoo Haah!! Forgit about it. So, a nerve stimulator was put in and did nothing for my back and neck and shoulder but only my legs which incidentally did work on that. Big deal! The only other thing it did was to stimulate my genitals. I couldn't get it up anyway. ha ha Here is another $200.000 for trial and permanent insert. Both 3 hour stay, both outpatient, one in a surgery center and the other in a hospital. Meanwhile, various pain medications were tried to no avail. Moving from Las Vegas to Seattle was next and the doctors here say I now have not only degenerative nerve disease but other things as well.
Mood problem 11/05/2014
Memory problem 11/05/2014
Heart failure 11/05/2014 (how that got in I don't know}
Underactive thyroid 11/05/2014
Chronic pain 11/05/2014
Difficulty falling or staying asleep 11/05/2014
Restless legs syndrome 11/05/2014
Sleep apnea 11/05/2014
Heart disease due to blocked artery 11/05/2014
Falling 12/05/2014
Transient alteration of awareness 12/22/2014 (sounds like a sci fi)
Ankylosing spondylitis 04/24/2015
Chronic kidney disease, stage III (moderate) 05/11/2015
Skin inflammation 05/12/2015
Difficulty swallowing 06/17/2015
Periodic limb movement disorder 07/20/2015
Loss of bladder control 09/10/2015
Skin inflammation 09/10/2015
Psoriasis 10/14/2015

I forgot some others but this is enough, don't you think? I really have a long record. Most doctors I see just tell me either I am a mess or too much complication of what I have. It's about 0212 and I am getting tired and before I finish, I will save what I have and go to bed. Sayonara.


  • ezymeleezymel Posts: 11
    edited 11/17/2015 - 7:11 AM
    Hi again everyone:

    I thought I could just add or edit my previous post but I couldn't so I just have to add here. After 3 hours of sleep which is about about what I get each day and once in awhile I can get a little more. Having RLS and chronic OSA, or obstructive sleep apnea, it is typically hard to get some decent sleep. I don't have much REM sleep. Although I take Trazadone and Requip, still at night when somewhat asleep, my legs shudder or twitch. My wife wakes up because she thinks we are having an earthquake. My snoring doesn't help and my 2 cats, meowing, scratching and pounding the bedroom door doesn't help either. It used to be and sometimes still is that sitting on a chair, my legs feel like moving and it does. The feeling is slightly bizzare and can be reconizable. Fortunately, it doesn't happen alot. If you note in my previous post all the medical problems I have that doctors are challenged and just look at me, shirk their shoulders and even don't know where to start. I just wish to add a few more items which are easily forgettable. I have leg edema, very red and scaly around the ankles plus circulation problems, CAD, and now 2 cysts were found on my testicles. I have to be careful when I take a pee so as not to touch them. he he. There may be a time, where I may have some surgical intervention. By the way I have no sex life as nothing functions because I had 2 terps or transurethal prostate surgery which destroyed my sex life. Oh, Woe! Now I am rambling a little, Sorry about that. Guess what though. Writing this letter, I haven't shown that I am complaining but stating facts. In no way am I am begging for sympathy. Like I said earlier, this is therapy for me as I can tell my story and develop faster typing skills. :) I can do at least 40 to 50 wpm. A little smile here. Each and every day it is a chore for me just to get up and make it throughout the day. Being tired all the time and listless, I cannot get much done. My wife cannot help either as she also has some disabilities like bad hip which incendentally she had 3 surgeries about 15 years ago and parts start to wear out. Doctors want to do another surgery but she doesn't want it. Age and rehab has a bearing on her choice. So then we are both care takers for each other. Not a good scenario. We live in a very nice senior community which is owned by a family who makes sure that we have what we need. Although expensive, it is still worth it. Living in a small town, Burien, WA, we are 50 miles away from my daughter who lives in Monroe. She and her husband have a nice log cabin home located in the boonies. At least we see them every few weeks. My wife having macular degeneration cannot see very well but she still drives. Myself on the other hand cannot drive at night and get lost fairly easily. It is hard to drive in this State anyway. Congestion is the rule and more so as Seattle is about 15 miles from here. The freeways are terrible and somewhat confusing. Google says we are now considered part of Seattle and our town is Governed by the City. A once unincorporated town, who was independent is now part of a big city or a sub burb. I love this State as there is so much to see and beautiful. If anyone who lives in WA will know what I mean. I am almost at a close here. Before I go, I just want to tell you that 2 of my doctors recommended medical mariuana as they feel that might be the only way that I can control this pain. I was trying to wean off my narcotic medicine but after many years being on it, I am starting to have withdrawls so I am back on them and when I get the medical certifcate to purchase the drug, I will once again taper off what I am taking now which is morphine sulfate and Percoset. I also been prescibe a low dose heart medication to help me with this. I am already off of morphine but I cannot be off any of the Percoset because of my pain. Still, when I take it, it really doesn't do much but maybe some. Here is the ending of my story. I live with this agonizing pain, mostly a 7 level increasing to a 9 at times and once I was at a 6 level. Pain is pain and no one does deserve it. A continual pain for years causes undue stress, personality change, function well, extream tiredness which wears you out, and depression. Depression is very common of this. I take 3 kinds of anti-depressants which at least keeps me sane. The World is hard enough to live in and we do not need more agony. Rest and peace is all I desire. Hopefully this new way of controlling my pain will help me. I can't wait to do medical mariuana or pot and thankfully is legal in this State but you still have to have that certificate prooving that doctors prescribed it and not be arrested by the FED's especially when you are in a different State where it is illegal. Not that I will be traveling but there will be a time where I will visit my daughter and brother in CA. So, here it is having a personal story that you just can't mention anywhere. I am very grateful that there is a means to post your happenings and share with others to help you to understand more and ways or suggestions to get on with life. Life for me is very hard and certainly hard for you as well. I am also a member of Inspire and Patients like Me. Check it out if you are not familiar with it. I do read many posts and help others and know that there is a way to correspond and share our sorrows and smiles. I just feel that every day when I wake up, it is another day as you take each as it comes. You make the best of it each and every day even when you hurt. You can;t stop living your life and do the best you can or you just might as well be dead. We go on and make the best of things and do what we have to. Pain still should not imprision us. You must have somebody to talk to and here is one of the best ways. Of course there are some days where you just rather stay in bed. Well, anyway that's it. If you have time, I would appreciae you reading this and if you want to comment, that would be great. I am trying to think of a proverb or a saying that fits with this letter. The only thing at this time that I can think of is [Pain is agony but live your life the best way you can and don't focus on the pain.] I probably will change the context later on. I wish you all well and hopefully share our concerns. Thank you once again for reading and if you don't answer, I do not take it personally. I know many of you are busy. Once more and thanks. Have a good one. Love to all.

    ezymel or Mel.
  • ezymeleezymel Posts: 11
    edited 11/17/2015 - 7:13 AM
    I have read several statements from people here who has to not only have to endure painful living but social living as well. It is really hard to explain to others what you are going through who do not understand what chronic pain really is and how it is shrugged off as a complainer, a hypochondriac, or just feel you want sympathy. That is BULL! The pain that you feel such as mine is real. Nothing else fits in here. Pain is personal and you just waste your time and become frustrated trying to express what you are going through to other so called "normal people." What is normal? How do you describe it? How do you feel about it? Many questions come to my mind and unable to really answer it. It is a gut feeling and it fills you with grief, uncertainy, and of course your well being. It is interesting to note what Tracy described and really opened up my mind to the reasoning what other people feel with a painful life. Pain is a feeling, a feeling of being unwell, uncordinated, sickly, and nothing useful in life that is useful to us. Just waking up each morning is an experience on how we are going to go through this day. This occurs each and every day for most people. Just struggling to get up and getting out of bed knowing that whatever pressure you put on your body is extreamly painful. For me it takes most of the morning and later on making it a little easier to go about whatever I do each day. Each and every day I experience pain which is constant. How can you force a smile? You struggle and the normal look for me that is just plain looking sad and frowning. It becomes part of you. No matter how you try, it is not successful. Facing people who see this always ask if everything is alright. They say you look down, what is wrong? You try to answer but nothing comes out unless you say fine. They don't believe you anyway. You try to ignore this but deep down it is disturbing. We as humans are basically intelligent but as time goes by with what we experience, our intelligence does not show much. I know for myself, I am unable to think clearly, being slow and uncordinated. That is also to my aging. A painful existence combining both, disability and aging. Each in itself is debilitating. Trying to make sense of it all is just meaningless. Our minds don't function very well when we are in pain. Our thoughts become a vast cloud trying to make sense of it all. Forgetfulness is the norm. People you know by face and not by name seem to be non existent. So, you just call them not by name. "Hey Bud, how you feeling?" for a man or "hey, how you feeling for a woman. Your not going to say "hey lady," thats a no no. It is hard for me to place faces with names. Your mind just goes blank and certainly you don't want to call someone the wrong name. You make excuses so as to cover up your mistakes. That is why socially you don't attend many functions as you used to for fear of not knowing what always to say and even converse. When I talk, people laugh because what I say may seem stupid or just meaningless. I don't take it personally if they are making fun of me. It's useless to do so. You never know is what you say is funny because of the subject or it is just you being stupid in what you say. By the way I hate the word stupid. No one is really stupid but they do dumb things like I do. It's doing something not thinking about it. I ry to think what is normal in life. I see people who look normal but are they really. No one knows what is going on in their mind. How do you know if they are indeed a psycopath to be extream. I try not to figure what other people think or do and mostly I do not judge them. I just know they are dealing with whatever they experience. We alone, us normals in our World and un-normal in their World differs so I don't think about it. The most purposeful thing is to take care of ourselves and don't think about people who are oblivious to our World. While I write, I still feel the pain in in my neck, shoulders and back when I move. Personally I am aware of this but I try not to dwell on it. Sometimes the pain becomes really unbearable which does make you focus more on it. That's it my friends. I hope what I wrote is meaningful. I would even like to frame this and put it up on my wall. Take care everyone and you will hear from me fairly frequently. Thanks for reading.

    ezymel or just plain mel.
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