Patient Letters: Perspectives of Pain and Hope

Dear Dr. Apkarian,

I’m curious: have you ever looked at the brains of well treated RSD pts? I’ve had RSD for more than ten years, but after numerous continous epidural infusions and regular PT, I have very little pain. I occasionally do have pain and the color changes, etc., but you’d never know that there was anything wrong with me unless you noticed the three small TTS1 Catapres patches applied locally. (I also take 25 mg Lyrica most evenings at bedtime.) I have a basically normal life (other than seeing my doctors every few months for refills and being diligent about the PT) with normal activity levels and full-time employment, I wish more people could get the tx I’ve had. frankly, when I first got dx’d (within the six months of onset), I thought I’d never get my life back, but I was lucky and had great doctors who listened to my symptoms and who worked with me. Working in health care was another advantage–I don’t know if I would have found out about the epidural infusions otherwise.

Anyway, I’ve seen studies like yours b/f and have always wondered about any changes my brain has undergone, given that I don’t have the usual course of the dx, so I thought I’d shoot you a quick email to ask.

Congratulations on the article.

Dear Dr. Apkarian,

I have RSD and it was a long and painful journey to get here. Misdiagnosis and doctors who acted like it was in my head. I hate pills. I will only take the minimum of anything. I had a neurologists “not” suggest marijuana for help with the pain. Many pain meds do not work. I just want some relief. I can’t sleep anymore. The leg spasms are killing me. And my internal organs are also affected. Originally they were looking at the white matter in the frontal lobe and tried to tell me migraines may be the cause of all my symptoms. I do have an increase in headaches but it is so much more than that. My Dr. wanted to do a bone scan . Because of the severe pain I was in and morphine didn’t touch it. He thought it may be bone cancer. He called with happy results; for him. How sad it was to learn that even how bad that would be, I was no closer to being diagnosed. It was a bitter sweet moment. I felt so lost. I found your article on line. I want you to know what and who you are doing research for. I may mean nothing to you. My story may not interest you. While I am getting worse and so many people are in the same boat as me; you are a source of hope. I cant even find a Dr. who treats RSD in my area. I live in Knoxville ,TN. Btw. So do what you do. Don’t stop. Please.

Thank you,

Dear Dr. Apkarian,

I have just been sent a copy of an article entitled “Back Pain – Shrinking Brain which appeared on 23/3/03 Reuters and on an xtra newsletter in New Zealand. I was particularly interested to read about your work.

I suffered an injury to my back in March 2002 following a nasty fall. In July 2002 I had a lumbar discectomy which has been successful. However, part of my injury was a prolapsed vertebral disc which bifurcated and entrapped my sciatic nerve. As a result of this my nerve was very badly squashed and I am now left with very bad pain. I feel very supported by the medical profession who are working with me and am trying very hard to get back to “normal life”. One of the things that is haunting me is that I am having troubles with my memory and with coping with everyday things which I used to do without thinking and with my eyes closed. Last week I was reduced to tears by such a situation which on reflection was not difficult to do at all. However, it is all very real to me when it happens.

Naturally I am a very active, positive, organised person and this fall has caused me much frustration and almost depression. I had hoped that I would have been up and running after 6- 12 weeks following my surgery and I am still having tremendous pain. At the moment we are trying Gabapentin as a treatment for neuropethic pain but so far it does not seem to be assisting with pain reduction.

Do you have any New Zealand connections working in your area of research? If I am able to assist in field studies in anyway – I’d be only too happy to supply you with information. If I can do anything to assist other people or rather assist in preventing this occurring to other people I would be delighted. It is the most huge upheaval I have ever experienced in my life and it is hard to convince people (friends and family) how real it is. I am usually greeted with a chuckle and that “oh, it happens to all of us, it is called age” but I am convinced that it is not – this type of memory malfunction is way over and above just going into a room and forgetting why you have gone there!!

For your information I am 52 years old, happily married and mother to 2 boys (18 and 22). I am a teacher and college of education lecturer but at the moment I am only teaching for 3 x 2 hour sessions a week because of my pain, the fact that I am unable to sit down and that I tire very quickly and feel hopeless and unable to cope. If I did not have my 6 hours a week I think I would have gone mad but I just can’t manage more.

I look forward to hearing from you if you can possibly find the time to reply to me. I felt so relieved to read about your research and very much hope that it progresses well.

Kind regards,

Dear Dr. Apkarian,

I read a press announcement about your speculation of back pain decreasing brain mass in the cortical region. A few months ago I had a fight with my wife over this issue. (She is a surgeon and I work on bio-physics, often incompatible disciplines.)

I feel that spinal fluid pressures are indicative of cranial pressures and that it is typical for there to be a decreased fluid capacity (smaller pressure volume) when there is an injury or muscular restriction in the spine. The higher up the injury the smaller the fluid volume.

As inflammation increases the overall pressure increases in both the spine and the brain case, increasing in waves where a high pressure wave spike (atmospheric and/or activity based) transmits damaging frequencies to tissue. I believe this increased pressure could cause gray matter deterioration where the un-relaxed volume transmits shock frequencies to resonant tissue (gray matter?) instead of absorbing them.

My wife thinks otherwise and says that I should take out the garbage instead of talking such rubbish.

Dear Dr. Apkarian,

My name is Susan and I’m am writing to you today after reading a recent article in the news regarding your study on chronic pain.

My husband has been left in chronic pain over the last maybe 8 years. He was hit by a drunk driver on his motorcycle and years later they found a leak in his spinal column. He’s had 2 spinal surgeries. Neither successful. They tell us now that only narcotics is what they can offer him and to make him as comfortable as possible.

His ciotic nerves are totally incased in scar tissue, he’s experiencing symptoms as MS patients. He’s been on epileptic and parkinson disease drugs.

He’s having some pretty weird problems right now, with everything from his waist down. Think I’d rather let you talk to him if your interested in his case.

Your article shocks me into reality. We have 2 small little girls, shelby and sydney, 8 and 5 years old. Now his Dad is with us, 75 the beginning signs of alzihmers and struggling through a court case. I’ve never been able to provide for my husband the things he needs. I don’t think its for lack of trying, but I’m losing my sense of reality lately too. The stress is overwhelming. You see, he’s angry, in a lot of pain all the time, takes overwhelming amount of drugs… and I should understand his moods and anger… and now I read that yes maybe he has a reason to be the way he is… I get angry that I have to deal with everything, financial stress… maybe I’m just being selfish. Just this weekend I lost it, it seems all the responsibility always comes down to me,… We’ve been married 21 years this May. I’m not sure how much longer we can go on this way. I try to hold on to the fact that are problems are few compared t! o the big picture of the world … after so long its just worn us all down.

Anyway, after reading your article, it made me feel even more guilty. I guess the reason I’m really writing is that I wondered if you or any of your contacts may know of some type of relief or cure for this terrible pain and symptoms my husband is having. We’ve been everywhere in Canada… or everywhere we could afford.

Anyway, after reading your article, it made me feel even more guilty. I guess the reason I’m really writing is that I wondered if you or any of your contacts may know of some type of relief or cure for this terrible pain and symptoms my husband is having. We’ve been everywhere in Canada… or everywhere we could afford.

In friendship and unity

Dear Dr. Apkarian,

I have read with great interest a summary of your research regarding the link between a shrinkage in the thinkingarea of the brain and chronic back pain, and the effect of chronic pain on the emotional parts of the brain, published in the UK Magazine TalkBack, of the charity Backcare. The summary was sourced from www.health24.co.za. I have also visited your website, Pain and Qualia.

After reading the article, I felt compelled to share my experiences with you, and I shall briefly explain why.

I suffered increasingly severe chronic pain with no obvious cause throughout my teenage years, and by the age of 20, during my final year studying at university for a degree in Geology, I was getting to the point where it was almost impossible to cope. I started receiving chiropractic treatment which, although helped, did nothing to dispel the underlying pain. After several fateful turn of events, I started on the journey of discovery to find out what was really causing my suffering. In September 2002, I finally found the answer a biomechanical abnormality in my ankle joints, which basically means my feet are attached to my legs at the wrong angle. This caused my feet to be flat, and in turn the rest of my musculoskeletal structure had to accommodate, resulting in exceptionally tight muscles throughout my structure which presented as a functional short leg, hyper-extended knees, forward leaning posture, sway back, functional scoliosis of the spine and rounded shoulders.

In October 2002, I visited a chiropractor who was trained in the assessment of such abnormalities, and was fitted for a pair of custom-made orthoses, designed to accommodate my ankles and control the motion of my feet. Although the chiropractor warned me that the experience of wearing these orthoses would totally change my life, I was still not prepared for the actual results.

Nine months later, and I am virtually pain-free. The changes that my entire body has undergone along the way have continued to amaze and astound me. Not only have I noticed changes physically, such as straighter more aligned posture and increasing tone in the muscles throughout my body, but I have also been aware of a phenomenal change in my emotional, cognitive and thinking abilities, which I never anticipated would happen. I understand that my experience may not be common, and that I have no proof of the pain I was previously suffering, but I found your findings on evidence of brain changes in those with chronic pain in comparison with those without very close to my own experiences.

It is only now, with the benefit of hindsight, and given my experiences of life both with and without pain, can I describe how my life has changed. Here are some examples:

1. At work, I previously had increasing difficulty thinking and concentrating. My work as an environmental geologist means I have to think and write technical reports on a daily basis, but at my worst, about a year ago now, I was simply not able to concentrate. My mind felt like it was in a fog, and no matter what I did, I could not clear it. Over the period of my employment since university, there was a clear correlation between the degree of pain I was suffering and my ability to think and concentrate. I had suffered a gradual deterioration of both during that time, and I had hit rock bottom by August 2002.
2. At University, prior to work, but still at a time when I suffered severe pain. I would feel as though I needed to try far too hard to do what I thought I was easily capable of. It was as if internally I knew I was able to think and conceptualise and get better grades than I did, yet the immense effort necessary to think and concentrate and absorb concepts in classes meant I would often not meet my own expectations. At the time I could not rationalise this I simply did not understand why.
3. At home, I would often have temper tantrums(yep, even as a teenager and grown woman!!) over the slightest thing, yet inside I knew that was not the way to behave. My outbursts felt like monsters coming out from the deep, that I was not able to control, whatever I did. This feeling of an inability to control of course made the situation worse, and I would sometimes suffer bouts of depression after the initial tantrum had faded.

This is just a sample of my experiences, but I can now safely say that all of these had virtually disappeared since starting to wear the orthoses, and experiencing the concurrent reduction in chronic body pain. It is now such an amazing relief not to have No. 3, and as for No. 1, well my ability to concentrate and think has rocketed (both in and out of work). Never before have I been able to logically undertake things, think through problems, or concentrate on a subject without having to fight the fog so easily than I can at the present time. These abilities continue to develop, as if my magic (by this I mean without me consciously wishing or willing them to), and I am eternally grateful that I am now being blessed with the ability to live the life I always thought I could, but never dreamt I would.

Chronic pain is typically something which is impossible to quantify, and from my experience at least, it was something I wasnt even aware I was suffering until it became so bad I could barely survive without numerous paracetamol and ibuprofen. Thanks to finding the cause of my suffering, treating it, and encouraging my body to heal itself (I havent touched a paracetamol or ibuprofen for 8 months), not only have do I have growing muscles, I can now be pretty confident that I have a growing brain too!!

Well, I sincerely hope that the above has been of interest to you, and if I can be of any further assistance, please do not hesitate to contact me.

I am currently building a website (www.root2being.me.uk) an educational and informative site in which I will describe my story, and explain how such a common problem as a biomechanical abnormality of the ankle can affect a persons life, health and happiness (and possibly also their brain as well!!). It is intended that this will be available later this year. Should you wish to find out more, I can send you a copy of the as un-yet published article of my story.

One final point: from my own point of view (and I know that you still have to prove this in many other cases in order for it to be considered representative) and given my experiences, I would definitely say that chronic pain causes changes in the brain, and not vice-versa.

Many thanks for your time
Yours sincerely

Teresa

Dear Dr. Apkarian,

An injury to my back-neck-knee 2/1996 has left me in more pain than I can bear at times, I have seen many doctors.. took all kind of meds.. the last three years I have not seen any doctors.. truly.. mad at them..I am not on my death bed so I do not receive any benefits…

You have really touched on something with this research you are doing, 7 years of chronic pain and I do know my brain function is not right…and has gotten allot worse since my accident, the left side of my face droops far more than the right.. and numbs up.. I believe this is from a nerve in the neck…I have Bad head aches..migraines. my memory is way off….it is hard to control my thought for a long period of time. concentration is …yeah right !!!

When I read your article… I was so very thankful that "Someone-Someplace was finally doing something about this Very large problem about chronic pain.. and the brain.. I have always felt that the cause of my "brain activity/inactivity" was due in a large part of so much pain. Now I was not a genius before this happened.. but a big change did happen and continues to grow.

I do hope you are blessed with all the funds you ever need to continue this Urgently needed research…

Thank you so very much…I would love to be rid of pain...7 years is just to much!!!
Your Supporter!!
Blessing to you and all involved in your studies.

Dear Dr. Apkarian,

I read with much interest your article about brain shrinkage and pain. I have lived unmedicated with idiopathic scoliosis, a double curvature. I underwent a laminectomy at age 18 ( 9 vertebra starting from 2^nd lumbar up) and the middle 3 vertebra fusion was soft. I later broke that laminectomy and cracked a vertebra at my waistline. I constantly have to compensate for my posture and cannot remember living one week without pain since I was a child. I have a higher than average IQ, but I have never been able to concentrate. All my emotional resources have been used to just manage from day to day. I don’t know if I would be a good candidate for your study, but I would be willing to offer any information about how to manage my pain. I am now 60.

I do know something about pain. There are different types of pain that I deal with.. I have passed out because of pain. I retain my breath because of pain. I get really quite because I don’t have energy enough to complain when I really hurt. And laughter has been a big part of my coping.

After I read your article, I just said to myself, “Oh, great, now my brain is shrinking!” I may as well laugh; it does me no good to whine. Let me know if I can be of any help to your studies.

Linda

Dear Dr. Apkarian,

I had the opportunity to read your research about the relation between chronic back pain and brain shrinkage in a New York Reuter Health article. I am very interested in your research because I have suffered from chronic back pain myself for more than 16 years and I have 2 surgeries and several treatments like desinflamatory blockades introducing needles through the spine. None of these treatments reduced my pain; instead, it has increased throughout the years.

I tried all the pills for pain relief in their maximum dosage with not good results. I have experience emotional problems and insecurity making decisions lately. This was not a problem 6 or 10 years ago when I was working as a technical manager for a bog company. 3 years ago, my doctor changed my treatment and started giving me fluxetina and amitriptilina and he cut the use of pain relievers.

For all these reasons, I am very interested in you studies and I would like to receive if it is possible more information about them. Thank you.

Via Email

Dear Dr. Apkarian,

I read of your presentation at the American Pain Society meeting in Reuters Health. Are all of your patients in Chicago, or are you possible taking patients with chronic pain who live elsewhere?

All pain medication I have taken is of little value. I am a 57-year-old woman. Pain began about August 2001 and forced me to give up bicycle riding, which I had participated every weekend day, and during the week for more than 22 years.

I look forward to hearing from you.

Louise

Dear Dr. Apkarian,

I just read an article about your study linking back pain to brain shrinkage. As someone who has been　fighting back pain for over a year now, I am very interested in this study. The article I read said that you would be interested in following a group of people with chronic pain. If I could be of assistance in this study or any future studies of this nature, feel free to contact me.

Kelly

Dear Dr. Apkarian,

Thank you so much for reviewing my sister’s case and providing your thoughts as to what may be of help to her. I will follow up on the recommendation and review them with my family. I would like to keep in touch regarding any additional thoughts that you may have and to provide you with feedback on what modalities we eventually select that may have positive benefits for my sister. Again, on behalf of my sister and my family, our deepest appreciation for your guidance.

Brian