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Not open for further replies.
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.
 

Forgetmenot

Extremely helpful member
Joined
Oct 6, 2014
Messages
1,408
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Hay welcome to the gang, do t be shy we all understand the train you are going through and the crappy Drs you some times get, next Dr who says that to u simple say ok mate did the job turn you into a miserable un caring self centred deme God or was you born that way.seems to shut them up lol.
I've lost a lot in my life but I still have a good SOH.i come here because ppl are kind .but I am
Am trying to kick start some humour.because we don't have a great deal to laugh about. Not that it matters a jot but I take it your a lady.?
 
Joined
Jan 20, 2015
Messages
26
Reason
DX FIBRO
Diagnosis
01/2012
Country
UK
State
Northumberland
Hi, forgetmenot. Yeah, I am female. Lol at the Demi God part! Yeah, he was an ass. Apparently other people have not got along too well with him either.

I consider myself pretty lucky that I now have a pretty good Pain Management specialist and GP on my side, with a decent combination of drugs that is being monitered. I have met some people with Fibro who have so much less than I do, being told to take just co-codomal and ibuprofen for their pain! I couldn't cope with that!

I'm pretty headstrong and know how to stand up for myself when I need to. I'm not someone who takes 'no' as answer very often. Unfortunately there seem to be many people out there who are pretty passive and really don't know how to get what they deserve. I guess dealing with the Job Centre over the last several years has helped with that, and I usually know what I should be entitled to. I am now getting ESA and PIP, and the Job Centre seem to have given up arguing with me over whether I am well enough to work or not. I haven't worked since my accident 5-6 years ago, and I am unlikely to work again. My memory keeps messing with me, and it is nice to know that it is not just me since reading some posts on here. Unfortunately the 'brain fog' results in me rambling far too much! Lol! So I need to check myself when writing posts so they don't become essays each time!

Anyway. I hope I can get to talk with other people in a similar boat as me. The depression is setting me back a lot. I am currently waiting for an appointment for CBT. I did CBT back around 10 years ago when I was severely depressed and hoping it will help me again in these new circumstances. In the meantime, I hope I can get to know some of you and have a place I can talk these things out a bit. :)
 

Forgetmenot

Extremely helpful member
Joined
Oct 6, 2014
Messages
1,408
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Wow your lucky getting pip.most of us get told to bugger off.ive been told by my Dr that I've most change with my depression than asking for fibro.sad in it
 
Joined
Jan 20, 2015
Messages
26
Reason
DX FIBRO
Diagnosis
01/2012
Country
UK
State
Northumberland
Wow, that is crappy. I didn't even have to appeal a decision with the PIP and I got a home visit! The trick is getting the right information down on the application forms and making sure you do not miss anything. I think I attatched around 4 extra sheets of additional information and a whole pack of photocopies of letters and appointment evidence from various doctors. The way I saw it was I was only going to apply once and I was going to make it darned well worth it. If I failed my assessment, then it would have been pointless for me to appeal. But it went in my favour!

Got my ESA re-assessment coming up, delayed by a year! I don't even remember the info I put down in the application back then, so I'm gonna have to make the appointment worth it. Unfortunately it is a roll of the dice on which assessor I see, and some of them are much better than others. I swear some of them just take joy from making sure you get nothing!
 

moe1959

Very helpful member
Joined
Sep 13, 2014
Messages
708
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
wa.
Any time!
Great place to vent.
 
Joined
Jan 20, 2015
Messages
26
Reason
DX FIBRO
Diagnosis
01/2012
Country
UK
State
Northumberland
Thanks moe. Yeah, nice to have a place where others understand.
 
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