Warrior of Light
Member
- Joined
- Jan 20, 2015
- Messages
- 26
- Reason
- DX FIBRO
- Diagnosis
- 01/2012
- Country
- UK
- State
- Northumberland
Hello there, I am brand new here and I hope not to make any faux pas during my 'initiation' phase. Lol!
I am 27 years old and was diagnosed with Fibro around 2-3 years ago, resulted from an accident at work around 5 years ago which damaged my foot and has left me on crutches ever since. Here is my story.
My foot was badly damaged and still causes me problems which is either from heavy scar tissue on the damaged ligament, or from Complex Regional Pain Syndrome (CRPS) - but the doctors won't give me another scan to check the healing process. Either way, it is similar treatment (or rather, 'non-treatment' except for the usual exercises and medication regime). I suspect it is (still mild) CRPS in my foot, due to the reduction of circulation in my leg over the years and the tingling pains that I get from time to time.
About 8 months after the accident, I began having severe knee pains and swelling, firstly suspecting Housmaid's Knee, then I soon began getting other pains in my shoulders, elbows, wrists etc. which I was then tested for Rheumatoid Arthritus. The specialist was less than sympathetic, and the results returned back negative for Rheumatoid Arthritus.
He suggested that he give me a steroid injection in my knees which I declined. I'd had two steroid injections in the sole of my foot already, the first being Cortisone, which was relatively painless thanks to the anesthetic, but the second (I don't know what it was called) was extremely painful because the anesthetic did not work and I felt everything. The Chinese exercised foot torture and I now think I understand the true horror of that suffering. (Unfortunately anesthetic and I do not get along very well. Due to dental work and other minor surguries - including the injections - I seem to have built up some tolerance to local anesthetics, I also react badly to the additional addrenaline in regular local anesthetics, causing me to twitch and make things awkward for delicate operations like injections - something I will come back to later in this post.)
So I declined the steroid injection in my knees from the Rheumatologist, and the conversation went something like, "If you don't take the injection, then you obviously are not in pain." I explained the previous horror of what happened to my foot only around a month prior, of three nurses needing to hold me down throughout the process of having a needle repeatedly penetrating the planta fascia, to which he only said that if I was in enough pain, I would take the steroids regardless. He could not garuntee a relatively painless treatment and so told me to leave his office as I was "wasting his time." I left only after pointing out that it was not only his time that was wasted... Thank goodness I don't have Rheumy, because I could not have put up with that doctor.
Anyway. I was seeing Physiotherapy, but I don't see them anymore. They were lovely and tried every treatment they had available for my foot and knee pains, including infra-red treatment, accupuncture, and an industrial sized TENS machine, but it ended with them saying, and I quote, "It's like hitting my head off a brick wall." Nothing was giving me any real relief.
Around 3 years ago I was refered to see the Pain Management team. They were, by far, the most use to me. My pains were becoming more widespread. As of now, I have pains in my foot (obviously), both knees, both hips, lower back, shoulders and upper back (which is the most recent part of my body to suffer permanently), elbows, wrists, and general muscle aches and pains. My Pain Management doctor has been helpful in helping me to understand my pain and actually explaining what Fibro is.
After some time of building up a trusting relationship with my doctor, we agreed on trying an injection into the sympathetic nerve in my spine. As I explained earlier, anesthetic does not agree too well with me and a tolerance has been built. For most, the X-Ray guided injection is not too painful of a treatment with the anesthetic on your side. Unfortunately for me, the anesthetic once again decided to not provide pain relief. That was the most most painful experience I had to endure. I had two male nurses keeping me from moving, and I was given something to bite down on and grip on with both hands and every ounce of self determination to not move in fear of severely damaging my spine! I admit that it temporarly eased the pain in my foot, but it I still suffer from random pains that shoot through my groin from time to time because of that injection. As you can imagine, I now refuse to have steroid injections at all! It is not so much fear, but rather I just cannot endure that pain again. I honestly rather die than go through that pain again. For some reason, I just couldn't pass out from it. Amazing what the human body is somehow able to endure without completely shutting down. :|
In the meantime, my medication was being increased and shuffled around. I am now taking 120mg Dihydrocodiene twice a day, Gabapentin, Baclofen (a type of muscle relaxant), Nifedapine for the reduced circulation in my leg due to the foot injury, Nefopam for additional pain relief when needed, a low dose of Amitryiptaline to help me sleep, and the contraversial Nabilone which is a manufactured version of THC, as I understand it. However, recently I have been advised to reduce the Dihydros and begin upping the dose of Nabilone and Nefopam so that I can come off the Dihydros altogether, possibly temporarily taking Methadone to help with the weening process if needed. Something I am still thinking about.
I am certainly thankful for the postive help I have recieved and the medication being optimised so thoroughly, but I now kind of feel like I am at some sort of standstill. My shoulders have begun to get really bad now on top of my other pains and is kind of getting me down that I am just going to continue getting worse and that I am able to do less and less as time goes on.
I am sorry for such a long read, but it is sometimes difficult to talk to anyone about the pain, because it is not something that I just 'go through', it is a struggle every day, despite how much I try to hide it sometimes. The intense pain I have been through in the past (as somewhat described above) is kind of a way of me saying "I know what pain is, I have experienced the limits of my body's pain threshold, and to me, when I say I am in pain every day, it is not the same as someone who suffers from achey feet after a long day at work - I am sore! It is just so difficult to have other people understand that sometimes.
So that is part of why I joined these forums and shared my pain story. To hopefully find and meet other people who are in similar pain and who understand what it is like to have chronic pain and also chronic fatigue. I know a lot of the treatment I have had has been directed at my foot injury, but the Fibro is a prominent part of my life, it is just that there are such few treatment options for it except for medication and ... well... a postitive attitude, which I have definitely lost over the last few months.
I hope someone can relate in some way to what I have said and I hope that I can meet and make some friends on here and help myself out of this dark hole I have found myself in lately. The pain and the fatigue is really getting on top of me, and I need to have something in my life that I can enjoy, and I hope that it can be found here. :smile:
Anyway, that is part of my story (the physical pain side of my story at least) and I wanted to share that and hope that some understanding can be found. It sometimes feels like I am the only one in the world who is suffering such day-to-day pain, even though I know for a fact that is far from the truth, and is even rather self-centered, but sometimes I just can't help but feel like that.
I don't mean to offend anyone by what I have written, and I guess I'm such calling out and reaching for someone to offer me their hand, if even just for a chat about things unrelated to pain and physical limitations. Meet some new people. Have some sort of a social life again.
Gee... I sound so depressed and lonely.. :sad: And this post is waaaay too long. Sorry.
I am 27 years old and was diagnosed with Fibro around 2-3 years ago, resulted from an accident at work around 5 years ago which damaged my foot and has left me on crutches ever since. Here is my story.
My foot was badly damaged and still causes me problems which is either from heavy scar tissue on the damaged ligament, or from Complex Regional Pain Syndrome (CRPS) - but the doctors won't give me another scan to check the healing process. Either way, it is similar treatment (or rather, 'non-treatment' except for the usual exercises and medication regime). I suspect it is (still mild) CRPS in my foot, due to the reduction of circulation in my leg over the years and the tingling pains that I get from time to time.
About 8 months after the accident, I began having severe knee pains and swelling, firstly suspecting Housmaid's Knee, then I soon began getting other pains in my shoulders, elbows, wrists etc. which I was then tested for Rheumatoid Arthritus. The specialist was less than sympathetic, and the results returned back negative for Rheumatoid Arthritus.
He suggested that he give me a steroid injection in my knees which I declined. I'd had two steroid injections in the sole of my foot already, the first being Cortisone, which was relatively painless thanks to the anesthetic, but the second (I don't know what it was called) was extremely painful because the anesthetic did not work and I felt everything. The Chinese exercised foot torture and I now think I understand the true horror of that suffering. (Unfortunately anesthetic and I do not get along very well. Due to dental work and other minor surguries - including the injections - I seem to have built up some tolerance to local anesthetics, I also react badly to the additional addrenaline in regular local anesthetics, causing me to twitch and make things awkward for delicate operations like injections - something I will come back to later in this post.)
So I declined the steroid injection in my knees from the Rheumatologist, and the conversation went something like, "If you don't take the injection, then you obviously are not in pain." I explained the previous horror of what happened to my foot only around a month prior, of three nurses needing to hold me down throughout the process of having a needle repeatedly penetrating the planta fascia, to which he only said that if I was in enough pain, I would take the steroids regardless. He could not garuntee a relatively painless treatment and so told me to leave his office as I was "wasting his time." I left only after pointing out that it was not only his time that was wasted... Thank goodness I don't have Rheumy, because I could not have put up with that doctor.
Anyway. I was seeing Physiotherapy, but I don't see them anymore. They were lovely and tried every treatment they had available for my foot and knee pains, including infra-red treatment, accupuncture, and an industrial sized TENS machine, but it ended with them saying, and I quote, "It's like hitting my head off a brick wall." Nothing was giving me any real relief.
Around 3 years ago I was refered to see the Pain Management team. They were, by far, the most use to me. My pains were becoming more widespread. As of now, I have pains in my foot (obviously), both knees, both hips, lower back, shoulders and upper back (which is the most recent part of my body to suffer permanently), elbows, wrists, and general muscle aches and pains. My Pain Management doctor has been helpful in helping me to understand my pain and actually explaining what Fibro is.
After some time of building up a trusting relationship with my doctor, we agreed on trying an injection into the sympathetic nerve in my spine. As I explained earlier, anesthetic does not agree too well with me and a tolerance has been built. For most, the X-Ray guided injection is not too painful of a treatment with the anesthetic on your side. Unfortunately for me, the anesthetic once again decided to not provide pain relief. That was the most most painful experience I had to endure. I had two male nurses keeping me from moving, and I was given something to bite down on and grip on with both hands and every ounce of self determination to not move in fear of severely damaging my spine! I admit that it temporarly eased the pain in my foot, but it I still suffer from random pains that shoot through my groin from time to time because of that injection. As you can imagine, I now refuse to have steroid injections at all! It is not so much fear, but rather I just cannot endure that pain again. I honestly rather die than go through that pain again. For some reason, I just couldn't pass out from it. Amazing what the human body is somehow able to endure without completely shutting down. :|
In the meantime, my medication was being increased and shuffled around. I am now taking 120mg Dihydrocodiene twice a day, Gabapentin, Baclofen (a type of muscle relaxant), Nifedapine for the reduced circulation in my leg due to the foot injury, Nefopam for additional pain relief when needed, a low dose of Amitryiptaline to help me sleep, and the contraversial Nabilone which is a manufactured version of THC, as I understand it. However, recently I have been advised to reduce the Dihydros and begin upping the dose of Nabilone and Nefopam so that I can come off the Dihydros altogether, possibly temporarily taking Methadone to help with the weening process if needed. Something I am still thinking about.
I am certainly thankful for the postive help I have recieved and the medication being optimised so thoroughly, but I now kind of feel like I am at some sort of standstill. My shoulders have begun to get really bad now on top of my other pains and is kind of getting me down that I am just going to continue getting worse and that I am able to do less and less as time goes on.
I am sorry for such a long read, but it is sometimes difficult to talk to anyone about the pain, because it is not something that I just 'go through', it is a struggle every day, despite how much I try to hide it sometimes. The intense pain I have been through in the past (as somewhat described above) is kind of a way of me saying "I know what pain is, I have experienced the limits of my body's pain threshold, and to me, when I say I am in pain every day, it is not the same as someone who suffers from achey feet after a long day at work - I am sore! It is just so difficult to have other people understand that sometimes.
So that is part of why I joined these forums and shared my pain story. To hopefully find and meet other people who are in similar pain and who understand what it is like to have chronic pain and also chronic fatigue. I know a lot of the treatment I have had has been directed at my foot injury, but the Fibro is a prominent part of my life, it is just that there are such few treatment options for it except for medication and ... well... a postitive attitude, which I have definitely lost over the last few months.
I hope someone can relate in some way to what I have said and I hope that I can meet and make some friends on here and help myself out of this dark hole I have found myself in lately. The pain and the fatigue is really getting on top of me, and I need to have something in my life that I can enjoy, and I hope that it can be found here. :smile:
Anyway, that is part of my story (the physical pain side of my story at least) and I wanted to share that and hope that some understanding can be found. It sometimes feels like I am the only one in the world who is suffering such day-to-day pain, even though I know for a fact that is far from the truth, and is even rather self-centered, but sometimes I just can't help but feel like that.
I don't mean to offend anyone by what I have written, and I guess I'm such calling out and reaching for someone to offer me their hand, if even just for a chat about things unrelated to pain and physical limitations. Meet some new people. Have some sort of a social life again.
Gee... I sound so depressed and lonely.. :sad: And this post is waaaay too long. Sorry.