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Where do I go from here?
7 Replies
Lee2010 - May 29

Hi everyone. I'm having a pretty hard time processing what I just learned from several docs. I had a feeling that it was coming, but held out hope that there was one last thing that I could try that would work. I was diagnosed with FMS about 4 years ago. On top of that I have a bulging disc in my back and an ankle that my podiatrist has to fuse two of the joints together in because I'm walking bone on bone. I also have a disorder that I don't even think has a name. The part of the brain that processes any kind of pain med - and I mean any kind - was never developed in me. Apparently I was born this way. What this means is that I have no way of alleviating the constant pain that I'm in. Yes, I've tried every iteration of every type of drug. Yes, I've tried alternative therapies. And the bottom line is that since that portion of my brain is essentially turned off, nothing works. I can take 3 Norco or 3 Percocet at a time and chase it with a nice, strong Margarita, and I feel nothing. It's like taking one Ibuprofen to me. My pain doc says that it's pretty darn rare, and I believe him since none of my many docs have ever run into anyone like me. I will have 3 different docs working in tandem to make sure that I have some pain relief after my surgery - I guess they're banking on an IV doing the trick. They know that my biggest concern is looking like a drug seeker, but I've never in my life been high - even when on the max amount of all of the different drugs.

I went through a bit of a depression when I got the final word that there is nothing left for me to do, but I realize that I can't live my life that way and have to just buck up and deal with life a day at a time. However, I'm just wondering if there is anyone else at all somewhere on this vast forum of wonderful people that has this same disorder? It would be so wonderful to talk to someone that gets no relief from anything and find out if they have found a secret weapon. I have met absolutely no one in the course of my life that has this problem or even knows anyone who does. And believe me, I know a lot of people. It's so scary for me to think about what's ahead as far as possible age-related issues, or even a car accident, and what I will do when needing to deal with the pain. I can't just operate and get that part of my brain back. It's gone forever - it was never there. As I look back on my, thankfully, healthy life, I realize a lot of things that didn't make sense then, now make perfect sense. For instance, like any other adult nearing the age of twenty-plus years, I drank. But realized that no matter how much I drank, I couldn't get drunk. I was the drinking designated driver. Alcohol just never affected me. Hence the ability to take huge amounts of painkillers, chase them with booze, and still feel nothing. Now I don't drink at all because it doesn't taste very good to me and frankly, what's the point?

So, where do I go from here? Nothing, and I mean nothing, works. I've been to every doc, tried every shot, every pain pill, every alternative treatment and drug that is used for something else, but sometimes works for pain, etc. Nothing I do will ever bring back that part of my brain. No one in my family - on either side, and for generations - had this problem according to my folks. I'm really at the end of my rope. I'm always in pain, and now I get to add to that the realization that nothing will ever work on me. Wow, did I ever draw the winning card.

So, if there is anyone out there with the same problem, I would love to hear from you. Right now I am feeling like I'm on an island all by myself. No one knows what to do or say to me anymore. They help the best they can, but there's not much they can do. I would just like to know that I'm not alone and that there are others like me.

Thanks for reading my rant. Guess I needed to vent and get it out. Hope to hear from someone - anyone.

Thanks again,


Peter Chapman - June 7

Hi Lee2010.
I've only just registered with this site. I'm a hypnotherapist based in the UK and have started looking at chronic illness.
I have no idea if what I am going to say will ring any bells with you or have any chance of helping you given what you have said.
Have you ever tried seeing a hypnotherapist for dissociation therapy?
What i mean by that is:
The hypnoherapist facilitates you effectively leaving your body and going on a journey.
As you are disscociated from yourself, the idea is that you feel no pain or a reduction in pain.
If you have been suffering with pain for a long time, all of the neural highways in your brain 'have pain on them'.
If you can create knew neural highways with no pain and keep doing this again and again, you might be able to be pain free for periods of time and, eventually, more pain free than not.
This is just a suggestion. Given your circumstances, i don't know if this would work for you. I would say it may be worth a try.
You do, of course, need to find a competent, professional hypnotherapist who may be able to help you.
I hope this has helped in some way.
Good luck.


ArtemisX - June 11

Hi, Lee. I just registered with this site and was intrigued by your post. I was diagnosed with fibromyalgia, MPS, and CFS in 1983. My rheumatologist told me that I had probably had these conditions most of my life and that they suspected it was linked to immune-system, sleep, and other neurological disorders, but they didn't yet understand the mechanics. I have numerous hypersensitivities and allergies to environmental and chemical substances, especially medications, particularly anesthetics and pain meds, as well as antibiotics and most everything else. During the first few years following my diagnosis, we went through every medication available at that time that I had not already had allergic reactions to, including anti-inflammatories, muscle relaxants, anti-depressants, etc., but nothing helped the pain plus I just had more allergic reactions to the new meds. Since I had to work full-time to support myself, I had to develop methods for "managing" this condition so I could function without the aid of medications. Despite numerous medical leaves for severe attacks over the years, I did manage to work for more than 30 years in fast-pace, high-stress corporate staff positions despite this and other chronic medical conditions before finally becoming disabled by them. However, this is NOT to say that this was easy to do, and I know that what works for one person doesn't necessarily work for everyone.

I was fortunate in that I had a birth defect in my lower spine that was damaging my spinal cord and sciatic nerves until it was discovered when I was 20 y/o. I had 3 surgeries in 3 years to fuse the vertebrae, repair damage, and remove scar tissue. Prior to the surgeries, I was very athletic and fit which, of course, helped to reduce the stress on my skeletal frame and joints. Furthermore, I grew up in an extremely physically and psychologically abusive home and was beaten if I even mentioned the constant pain in my back, legs, and feet. I was also extremely defiant - at a very young age I recognized that my parents really enjoyed inflicting physical and emotional pain on me; since I was too small to defend myself against them, I deprived them of their enjoyment by refusing to flinch or cry or let them see any indication of my pain. In order to do this, I had to separate myself from my body in a sense by consciously creating a separate persona that knew no fear and felt no pain - a persona that I could "step into" at will. So, by the time I had the back surgeries in my 20s, I had already developed techniques for dealing with pain - techniques I continued to develop and modify over the years which have also served me well in managing the fibromyalgia, such as redefining "pain" - moving the "pain" marker up the spectrum bit by bit - substituting "intense sensation" for the word "pain" since I know that the fibro "intense sensations" are essentially false alarms - I already know what the problem is, so I don't need to be "alerted" to it - it is not life-threatening and does not require my immediate or full attention. But, please understand that learning to "trick" and use your mind this way takes a lot of practice and mental energy to maintain focus and concentration - and this is especially difficult when you are emotionally stressed and physically fatigued - then I use warm or cold compresses directly on the affected area, and take a couple of extra-strength Tylenol (allergic to ibuprofen, of course). The only other thing that has ever helped my pain is injections of cortisone directly into the areas under attack. Although temporary, it does give a degree of relief for a few days, and the pain is not quite so intense when it returns.

When I was diagnosed with fibro in 1983, there really wasn't much information available and meds either did nothing to relieve the pain or were not an option for me. I learned all I could about fibro from my doctors and figured out bit by bit what did and did not work for me. Although the techniques I had developed previously were helpful in tolerating the pain, I had to develop other techniques for managing the associated intense fatigue and neurological problems (neuritis, insomnia, brain-fog, vision problems, migraines, etc., etc.). Over the years I found that consistency was the key - consistent and appropriate diet, exercise, rest, and stress reduction. It's like walking a tightrope - poor diet, strenuous exercise, lack of rest, and too much stress throws the balance off. Exercise must be gentle - stretching, walking, swimming; going to bed at the same time each night whether you are able to sleep or not - if you can't sleep, do mild stretching using the bed to support your weight both at night and upon waking - take warm showers or baths before bedtime - do light reading to distract your mind from the physical discomfort and stresses of the day - don't get upset about being unable to sleep, and don't get out of bed and pace about because this will only pump adrenaline and other stress hormones into your system and make the fibro worse; avoid/reduce known dietary offenders (caffeine, refined sugar, etc.); and keep your mental attitude realistically positive - don't get upset and stress about the fibro because it will make it worse - it is what it is - don't allow others or yourself to impose unrealistic expectations on you - avoid/ignore lay-people who delude themselves that they are medically qualified to evaluate, diagnose, and prescribe treatment for you, and who berate and belittle you because of their ignorance and personal biases and dysfunctions. Learn to be very patient with and compassionate towards yourself, and understand that fibro and other such conditions have nothing to do with your identity, the quality of your character, or your mental competency and stability.

I am 61 y/o now; although I have developed many coping techniques over the decades, I am still in constant "pain" and I still have severe "attacks" from time to time that can put me down when I allow things to get out of balance. The important things I have discovered about managing fibro, etc., are to keep gently active, keep the muscles strong, and keep the muscles, tendons, and ligaments stretched and flexible; don't remain in one position for prolonged periods of time; don't sleep too deeply because I need to naturally change positions during the night, otherwise I can't move the next morning; rest when my body tells me to rest regardless of the criticism or expectations of others. Surround yourself with the most caring and compassionate people you can find - basically, take charge of your condition and just do whatever you need to do whenever you need to do it in order to find and maintain your "balance" by trial and error - find the techniques that work for you that help you establish that zone where you can function best and have better quality of life.

Although my intolerance of pain meds due to my hypersensitive immune-system disorder is not as severe as your unique condition, Lee, don't give up - medical knowledge is advancing more rapidly than ever. In 1973, my neurosurgeon did try a new device at the time - it consisted of a couple of leads that I stuck on my skin that were connected to a little box that sent an electrical current through the nerves between the two leads to disrupt the pain signals along the nerve pathways, and I could adjust the intensity of the electric current. It didn't work very well for me and eventually my doctor had to resort to injecting cortisone directly into the areas surrounding the "inflamed" nerves. But, I know they have since further refined similar devices - perhaps this is something you can explore since it disrupts the signals directly at the site so they never even reach the brain.

I hope you find something helpful in my words, Lee, and that you can find ways to improve the quality of your life.



January - June 11

ArtemisX = thanks for a really interesting post. You sound like you have done a heck of a job with a difficult situation.

Just wondering if you ever became familiar with porphyria?? There are some posts on here about it - and I learned a lot by looking into it. I had allergies to certain drugs throughout my life - mostly antibiotics, anesthetics - reactions like severe vomiting and neurological symptoms. When I started researching porphyria (genetic - 8 different variations) - every drug I've had bad reactions to was on the list of drugs that cause acute porphyria. The best place for Information is the American Porphyria Foundation, if you're interested, they have links on their website to lists of drugs that are problematic. Not that it will fix your fibro… but just another piece to the puzzle! And possibly a cause of some flareups sometimes…?

Also, I read with interest about your experience of abuse, and the coping mechanisms you developed. Interesting - and while Western medicine might look at some of these things as problematic, I think a more holistically oriented therapist might view the coping mechanisms as a positive way to deal with an impossible situation.

Thanks again for sharing your info. Hope you are having a decent day! : )


deigodirty1 - June 13

Lee, I understand what you mean when you say you feel all a lone becuse my legs hurt my arms hurt my head hurts neck shoulders and everybody thinks I'am crazy, i work a full time job which is very physical and the doc's wont give me any pain pills i went to the er and got 2 shots 1 for pain and 1 for antiflamatory. I don't know what to do some days are better then others but I seem to be getting a continues pain in my left side leg up to my arm neck and shooting pains in my head on that side. if you need to talk I'll check everyday but remember your not a lone we all hurt but yes you do sound uniquie. I hope everything works out for you check back later. I did try the natural sleepaide and the natural pain relief but so far nothing.


deigodirty1 - June 13

You sound like you know what your talking about I'am 51 yrs old and have been hurting the last 5 to 10 yrs, The doc's tell me it's just artritis and i have to deal with it well I have tried to ignore it but when I do something that i shouldn't have it reminds me. The pain is now starting to get worse i seem to have a continues pain on my left side leg all the way to my arm,somtimes my pelvic area is the worst it hurts to walk or even sit. people say I'am making it up but i know what i feel it's not something you want to makeup. how do i get the doc's to understand what do I say to them. I was a speaker for my mother and now i can't even speak up for myself. I go to the spine doc 29th of june, I really don't know what he can do, my internal doc is on leave so I have to find another. I just want to curl up in a hole and never come out and yes i've been under a lot of stress i took care of my mother who was ill off and on for the past 15 to 20yrs and I took care of her in my home until she passed and I never let on of my own pain physical or emotional now it's got me bad. I had to step down from my fromer position to a lower position,losing pay too, at work because of the stress from work on top of what I'am going through now.I don't want to complain but does it get better like i said i'am so tried i don't want to go to work anymore. I've tried to ignore it but I can't anymore, What do i do now? can anyone help me please.


January - June 13

The caretaker thing REALLY wears you down! You need some caretaking to get over all that strain.

If you are going to the spine doctor, ask for a "sitting MRI." I have really bad back problems - and had them for a long time. They cause a lot of my pain. But CAT scans, X-rays, and regular MRIs did not pick up the problems so well. When I got a sitting MRI, it was SO CLEAR that I had herniated disks and other spinal problems. When you take films like that in to the dr., you can SHOW THEM that it is not "all in your head." They will then be more inclined to take you seriously. You just have to keep going back in and complaining.

Doctors have to be really careful because the government carefully watches pain prescriptions and they can't be writing them out too much. Unfortunately, there are people who just go around and say they have pain when they don't, they are just looking for drugs to party with, or to sell. Those people really should be put in jail. They make everything hard for people who cope with severe pain every day. Just keep going back to your doctor, complaining. Hopefully, they will test you and find out what's wrong with you and treat it.

Good luck with it.


Lee2010 - June 16

Hello everyone!
I'm so sorry that I haven't answered sooner! I was moving two sons home from college - one for the summer and one permanently, and haven't had the time to get on the computer. My oldest son graduated, got three job offers, and chose the one closest to home so that he could live at home, help out, and sock the money away so that he can have a down payment to get his own place. It will be so wonderful to have him here!
All of your posts were ever so helpful.
Peter - I have actually been looking into Hypnotherapy, and will continue to research it in my area and see if anyone can give me a recommendation. Thank you for getting me going in that direction again.
Deigo - Thank you so much for the kind words of support. It's so nice to have a place to come to and vent. Sometimes I do think that I'm going crazy and I totally lose it, but I just go outside and sit in the dark and cry for awhile. It seems to help. I have to remember how blessed I am and that this will not rule me. Easier said than done at times. Hang in there yourself. I don't know how you do it with working full time. That would absolutely do me in - who am I kidding? - I would be fired for missing so much work! Gentle hugs to you and thanks again.
AtemisX - Wow, where do I start? I can't begin to know what your childhood was like. I grew up in a loving home - my father was a pastor and my mom worked full time to help supplement our income. We always had financial issues, but somehow everything always worked out. I didn't need to develop the amazing coping mechanisms that you did. While reading your post, I just wanted to find you and give you the biggest, longest hug that I could - it sounds like you have had such an incredibly long and sad journey.
I try to stay balanced, as you do. At times it seems to be very difficult. I walk with my husband on the days that I can, and do stretches in bed that my Physical Therapist showed me. I have an amazing support system - all of my friends and family understand the pain I'm in, and the daily frustrations, and do their best to make life as easy on me as possible. My husband is a rock. We've been together 30 years - married 25, and he has supported me and been there for me through all of this. My kids help out when they're home - and now my oldest will be here to add that extra hand. I realize that I have limits and just have to learn to live with them. I do a lot of reading and brain stretching puzzles to try and help with the "fibro fog". I want to stay on top of everything that's going on in the world, since I sometimes become something of a hermit - canceling lunches with friends frequently because I feel like it would be too much work to get out and about. I was fortunate enough to be able to be a stay-at-home mom, and had the majority of the "bad stuff" start when my baby was a senior in high school. I maintained my volunteerism until he was graduated, and it almost did me in a few times. I have led a full and blessed life, and often feel bad for letting on that I'm feeling less than stellar, but my friends all rally and tell me that it's okay to whine and talk about it. I just found out that I can get into the Pain Clinic here, so am looking forward to finding out if there are alternatives to my treatments that I haven't tried yet. Oh, and as for the box with the leads that had an electrical current sent through them, I had that multiple times, at home and in P/T. I think that you're referring to a Tens Unit. It has worked for friends, but unfortunately, did not work for me. I have lower spine issues as well, and my doctor said that surgery is the only answer as we've tried everything else. The only thing that we didn't try was having wires implanted in the spine with a unit that sends electrical stimulation to the spot. I refuse to have it since a friend had the same procedure done, and is now in a wheelchair full time and paralyzed from the waist down. Probably wouldn't happen to me - but it kind of ruined the idea for me, you know?
Thank you so much for the soul-bearing that you did to me and the others on the board. You are truly an inspiration. I'm sending you cyber hugs since I can't hug you in person.
Thanks again everyone, you are all wonderful!



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