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To Stay or Go?

AnonymousUserAAnonymousUser Posts: 49,322
edited 06/11/2012 - 8:26 AM in Chronic Pain
I'm new to these boards and not even sure if I am in the right place. I have suffered from dibilitating migraines for the last 17 years. After having a migraine daily for 6 months and being dismissed by my neurologist we finally stumbled upon a medication that helped me. All of this I managed to deal with while working full-time and goind to graduate school For two years I was virtually pain free and in that time met an attractive, intelligent, romantic man. My friends warned me that we needed to slow down because he had not seen me "in pain" yet, but despite their advice we married in December 2006.

Since February 2007, just 2 months after our wedding, I have been suffering from chronic pain in my spine which causes (?) tingling and numbness in my hands and legs on both sides of the body. If that were not enough issue, when I am not numb I have shooting pain in all four extremeties that feels for all the world like cats are scratching me. I have been to an Neuro, Rheumy, and NeuroPhys and had MRI, MRI with contrast, Xrays, Nerve Conduction and Evoked Potentials. I fail the neuro exam every time in multiple areas and apparently also did badly on the evoked potentials but they still have not narrowed down the exact problem. The NeuroPhys very much thought it was MS, but I do not have the correct symptoms so all she could tell me was that it was something in my Brain or Spinal Column.

My husband was supportive at first when I fell down the stairs and passed out behind the wheel of the car and could not drive. But after 2 years of this we fight on a daily basis. According to him I am a "hypochondriac" who is "bipolar". He is constantly telling me to seek couseling and stop seeing doctors for my "made up" illnesses even after both he and my mother sat in on appointments with the NeuroPhys where she stated that this was not a psychiatric illness at all.

To make matters worse, his father has a mental illness and I have always known that he could not tolerate being around people who were mentally ill. When they tried putting me on seizure meds to help with the pain I had violent reactions to three different medications, with terrible mood swings and psychotic episodes. I even slit my wrists with a razor on two different occasions, but did not cut very deeply.

It has already been suggested to us that we move closer to my family so I have a better support system. I have been unable to find FT work in our new location (where we moved for his job) and the pressure of me not working FT is very upsetting to him and our finances. Plus all of my friends are so far away . . . But he says that is not possible. Plus any time I take more than one medication he goes on and on and on about how I "pop too many pills."

I am tired of fighting at this point but I'm also tired of hurting. As long as I act "well" then things are fine except I hurt about 10x's worse. Any suggestions?


  • Some people can't understand chronic pain even if it's something not diagnosed. Maybe you need a marriage counsellor. Also decide if you want to stay in this relationship. Continue to see Drs until you can get a diagnosis. Perhaps if you can see a pain management Dr. maybe that will help. It must be frustrating not knowing what you have going on. I wish you all the best. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • am so sorry to read what all you are going through. You will find alot of support and understanding from our wonderful members here. I am afraid there are no easy answers for your situation but if there is ever anything that I can do for you then please feel free to PM me at anytime and I will always reply and do for you what I can. You are not traveling this road alone anymore , you have all of us. Below is a copy of a "Letter to Normals"...we have used this many times on the old SH site and now the new one...it may help you or you may choose not to use it all but I thought that I would give it to you anyway because it has helped others in the past. The choice in yours sweetie. Good luck to you and please keep us posted as to how you are doing. Don't ever give up....take care , Miki

    Letter to Normals from a Person with Chronic Pain

    This was quite popular on the old website, and I see someone requested it, so thought I'd reprint it again.

    This is an adaptation of a piece written by Bek Oberin.

    A Letter to Normals from a Person With Chronic Pain

    Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

    In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.

    Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.

    Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

    Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

    Please repeat the above paragraph substituting "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.

    Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

    Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

    Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

    If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

    If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

    In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

    I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

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  • :) hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. i am sorry you are suffering so. :''( you will find others here who feel as you do and have your problems as well. it can feel good to have liked minded friends around. :D please have a look around and make yourself at home. i hope you find some pain relief soon. Jenny
  • i hope things are going for you...sometimes things seem really dark just before we get that break.................I too had many people telling me I was a nut only to almost die with rhabdymylisis which is the disease you get from taking lipitor for high cholesterol

    i suggest if you can to try to rid your environment of anything that you started around the time of the first migraine and never give up hope

    nancy in canada
  • For all of your suggestions. We are going to counseling, though the soonest we could get an appt was the end of this month. Right now we are focusing on "low hanging fruit" as my husband calls it -- things we can reach and change in the immediate future. I'm not sure what has brought about the change in him; possibly the fact that I am in so much pain it is difficult for me to eat which is SO not like me that it is finally causing him to take things seriously.
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  • This is so stressful for such a young marriage. I've been married almost 22 years and it is tough. My husband is wonderful, however, and truly understands. Maybe with time your husband will? I also bet he is being triggered subconsciously from having a mentally ill father, so that definitely needs counseling to work through. That is not fair for that to be held against you. Also sounds like his mother is part of the problem?

    I will pray for you. Good luck with your counseling this month and I hope you make some progress. This is such a tough road for you (pain) and a loving team can mean the world. I know my husband didn't sign up for this, but in sickness and in health - he really meant it. I'm so thankful and doing my best to get better.

    ( ( HUGS ) )

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