Please help me if you can

[FairyNuff]

My problem is this....
I am a T1 incomplete, 28yrs post SCI. I've lived my life to the full and along the way have sustained a few more injuries. 17yrs ago I broke my femur above the knee and it was pinned and plated. It has never caused me any problems up until now.
 In the 10 day period leading up to my current predicament, I did more car transfers than usual (twisting my knee on each occasion), put an horrendous amount of shopping (included 10X 500ml drink cans and 10X 200ml of juice cartons on my lap (ie knee) and finally did some filming at ground level of a Robin feeding. This entailed me doubling over in my chair and holding my camera just above the ground. Really stretching the ligaments etc in my knees. Great pictures by the way!
 Anyway 4 weeks down the line, Im in absolute agony and total disbelief of the medical profession. Here's why, and why Im asking for help/advice now. On Monday 20th July my leg kept going into spasm and I could feel that there was pain in the area round my knee. I tried resting it but that didn't help. On the Wed I started taking OTC Paramol (paracetamol/diydrocodeine), didn't really touch the pain. Thursday I asked for a GP home visit, he came and we agreed that as there was no inflammation, swelling or heat, it was probably cracked. He also started me on Diclofenac 50mg tds. A trip up to A&E and two X-rays were taken (one from above and one full length of femur knee to hip joint).The junior Dr on duty, thought there was a crack and I was then given an appt to attend fracture clinic TWO days later! The Consultant I saw didn't agree, saying that everything was normal and he didn't want to see me again.
When I got home I phoned my GP and told him of the outcome, He sympathized and tongue in cheek I said, "so I guess I'm on my own then." "yes" he replied.  Mon 27th July, I thought it must be ligaments and began a week of  rest and pain relief, when up and about I wore a neoprene knee brace. It was no better and on the Thurs I phoned my spinal unit for advice. They finally got back to me on Monday 3rd Aug telling me to rest it and keep taking the anti-inflammatories. I did, until last Friday 14th Aug. Unable to stand the pain I phoned my GP again and he got me an emergency appt at the fracture clinic for that morning. We duly arrived and I was quickly seen by a Dr (wasn't a Consultant)who was every so slightly patronising. He went through the X-rays showing me there was definately no break. Suggesting instead that as a SCI it was nerve pain/phantom pain and he would ask my GP to refer me to the pain clinic. But because i heard nothing, just knew I'd done 'something' I'm getting nowhere.

 (I add a red herring here.... a childhood friend who also happensto be SCI was turning herself in bed when she heard her leg crack. Up to Xray, two Xrays showed no fracture. She insisted she heard it crack, two more xrays showed she had indeed fractured it. Wanted to send her with nothing, but eventually she got her way and her leg is now in a brace. End of story.)   
 So continuing with last Friday, When I got home I phoned the Spinal unit again. This time (same nurse as before) she told me to get my GP to write a letter requesting that I been seen by the Consultant.  I managed to speak to my GP and I heard him dictate the letter. So I know that's in the system. I am still trying to rest it. The Voltarol and Paramol are really just stopping me from going into AD and Ive also upped my Baclofen to the maximum. Sometimes I feel as though im going to pass out with the pain and I phoned my GP again today to ask if he'd refer me to the pain clinic if that was my only option. Saying I have got to have some level of effective pain relief. He has added Amitriptyline to my Paramol and Voltarol.  I thought that was for depression? Im not depressed, im in PAIN.  But one thing is clear to me, I believe in quality of life not quantity and if this is not resolved soon then I am quite prepared to take my own life, not because Im depressed but because I can't bear the amount of pain Im in!

Sorry about the length of the post, but thank you for taking the time to read it. If anyone can help me, in anyway I'd really appreciate it
 

[Lieveling]

Hey fairynuff,

0uch Ouch Ouch!

You are in pain and I wish I had more medical knowledge to be of real assistance to you but I don't. However I have the old fashioned common sense and strictly speaking you cannot go on like this.

Just get yourself into a hospital quickly (preferably one with a pain clinic) - you need something to be done and NOW! If you're talking about taking your life because of the pain then this is truly serious. You need to say this to a doctor so they understand the severity of the situation.

Perhaps go with a strong friend or nurse who can also push your case for you.

Good luck and I really hope this problem is solved soon.

[FairyNuff]

Thank you for taking the time to reply. Ive told my GP how I feel, but it's made no difference.

 I'm wondering whether or not to take really drastic action. If I stop my pain relief, I could go into AD then they would have to listen, because you don't go into AD for phantom pain do you? At present when the pain relief is wearing off I can hear the blood pulsing through my head!
Admittedly the neuropathic pain in my legs has increased ie the burning/ stinging but the pain in my knee is a very deep ache.

[Lieveling]

Hi Fairynuff,

the thought of allowing yourself to go into AD did cross my mind but I didn't want to suggest it to you.

Be very careful about doing this, as it is a dangerous and life threatening condition! It must be managed quickly and carefully by professionals who are familiar with it. ......

However I am worried that AD is where you could eventually go anyway given the severity of your condition and your symptoms when you just reduce your pain relief.

Whatever you do, do it as safely as you can!!
Wishing you all the best!

[FairyNuff]

I think im ready to let it happen.  I will be in control and as soon as it starts I'll do the GTN spray and take both the Paramol and Voltarol then phone 999.

My GP is doing 'ring back' sometime between 11.30 and 12.30 today and I will tell him of my plan and see what his reaction is.

I'll let you know what the outcome is/was.

and many thanks for your support, I really appreciate it.

Just spoken to GP again. He's now prescribed Gabapentin for the pain as all the Amitriptylene did was make me drowsy.
He is also going to get me a bone scan (which was what I suggested at the beginning), can't have an MRI because of the metal work in my knee. I bottled out of mentioning AD as I don't want him thinking Im suicidal, although desperation might make me think again.

[Lieveling]

Honestly, it can be frustrating to say the least dealing with the medical world, but it seems that you are now getting somewhere on this. Hopefully the bone scan will shed some light on the situation.

Glad you didn't have to go too far in order to have the scan.

The irony of it all, not wanting the doctor to think you are suicidal (which you are not by nature) but being so desperate at the same time. Hope he pulls through for you.
Sounds like it's happening at last.

do keep us posted.
Take care

[cate]

Hi. I do hope you are getting somewhere at last,   So sorry that you are not getting much help.  I would just add about the pain  killers tablet.  Now I am not sci . my daughter is, however I have had tremdous back problems recently, and the pain has been unbelieveable, when to a physco privately   and she gave me exercising, said not to come back until I had  X rays , well I did,  but had to wait 6 weeks for an appointment with NHI.   and the pain in the meantime getting worse, and also by this time cannot walk.  so Dr, gave me some anti depressant tables. when I  said not depressed  just full of pain, and he explain they  worked on the nerves and would help with the other tables with the pain, and would enable me to get some sleep,  Sorry for long epics, however that is what they did,  Did not  kill the pain, but helped me to make it more bearable.  Do hope you get your scan soon, as X-rays do not always show up all that is going on.

[FairyNuff]

Hi Cate
           Thanks for your reply. I am now aware of the nerve link, and my GP has just added garbapentin (another drug which as a side effect works on nerve pain) I started on a low dose of 300mg a day and got up to 500mg (GP wants me up to a daily dose of 900mg) but now i'm feeling really odd and have stopped for the moment. Ironically it did work on the nerve pain ie the burning/stinging but not on the actual knee pain.

I have heard nothing from either Spinal unit (for general check on knee) or local Hosp (for a bone scan) requests asked for a week ago.

 With the nerve pain removed I am very much aware that the pain is directly through the knee, meaning I'm sure it is the 'bolt' part of the pin and plate that is the problem. Which is also why no fracture showed up on the X-ray. In AB persons, the pin and plate would have been removed about a year after first inserted, but up until now it has been fine. I think they will probably end up removing it.
 But while I'm waiting for 'it' to be sorted, I now have the most wonderful distraction, a new puppy (the breeder kept her an extra 3 weeks because I was afraid I wouldn't be able to cope with a new puppy). My fears have been unfounded as she is the most wonderful little puppy and is almost 100% housetrained at 11 !/2 weeks!

As for my knee I will keep you both updated on my progress. Again thank you both for taking the time to reply to my post, it's really nice to know there are people out there willing to help even if it's just moral support!

[cate]

So glad you sound a bit more hopeful. glad the puppy is bringing you such joy,, my daughters best friend through all her ops was her GSD.,  she died about 18 months ago, and 6 months ago she rescued  ad gsd,/.husky, and that is good for her.  also understand about pin etc in your leg,      my daughter original had a ACL injury, and the ops did not go well, she get telling them it was not right, but they knew better, eventualy they did an exploratory op, and found that all the pins had come out, that was a shock for the hospital,   they do not seem to realise that you know your body so well yourself,  well my daughters has had her knee rebuilt now  i e 4 ops later, by  another surgeon and it is as good as it will be,  This seems to give her more pain than her sci op and problems.  O well  life goes on, so just keep fighting     on.
and enjoy your pup, will help you  to concentrate on him

[FairyNuff]

I'm glad your daughter got her leg problem sorted, it is a help to have a dog as a companion. Their unconditional love is like nothing on earth!

At the moment I have never been in so much pain in my life. I broke my ribs a few years ago and I thought that was bad, but it's nothing compared to this.
Had to stop Garbapentin because of bad side effects. Now on Lyrica, which is working to some extent but I feel so knocked out I can hardly keep my eyes open. Fine when the puppy is asleep but not for playing and keeping her occupied.
 I really don't think I can keep going, I can't stop bursting into tears I feel so low.

[cate]

I am really sorry for how you are feeling, and cannot offer any help. just good thoughts. Not a lot of help. There must be something else that could help the pain, and not make you feel so lousy.           Have your Doctors offered the pain clinic?,  that   could possible be of some    help. but think there is waiting times for that also.
Do keep talking to us on here,  not a lot of help. but do know that we are listening,     
Cate
             

[FairyNuff]

Hi Cate, I appreciate your kind thoughts. Funnily enough, I think it is the Lyrica making me so depressed so I've cut down to 50mg 3 time a day. Its working well on the pain but l feel as though I've been hit with a tranquillizer dart, having difficulty staying awake, vision is odd and have got quite violet involuntary movements in my hands and fingers. Talking to my GP again (ring back) sometime today.
The pain clinic has been suggested and I'm waiting for an appointment. What I really want is the source of the pain to be revealed!

[cate]

Hi.  I think you are probable right and that the pain killers are making you feel very low and depressed, it is a double edge sword you have there,  Lets hope the pain clinic comes up soon,    side effects do not sound very pleasant.    It would appear to get anything moving  on the NHS takes time.  makes things harder.
Do hope y ou have other support around you with family and friends, and do  enjoy your puppy, they are so amusing    perhaps can help with the pain.

Cate

[FairyNuff]

At last I have answers and feel totally vindicated. On Satuday night after weeks sleeping on my back, I slept on my side and woke in the morning with even worse acute pain in my knee. It was so bad I went back to A&E. The Nurse Practioner was excellent and said she wanted me to see an Ortho Consultant before leaving the Unit.
The Consultant I saw took time to look at the original X-rays (from 7weeks ago). He asked me where the pain was and examined the knee. I was able to tell him exactly where it hurt. He pointed out on the X-ray, that where it hurt most, all the cartilage has worn away, with bone rubbing bone causing splinters. That I have arthritis and I am now being referred to a specialist knee surgeon for a partial knee replacement.
My GP is furious as I've been seen TWICE (with the X-rays) by an Orthopaedic Team and both times I was told there was nothing wrong, (that the pain must be neuropathic.)
I've bought myself a constant passive movement (CPM) machine from the US and am going to start using that to help my knee. 
Thanks again lieveling and cate for your moral support xx

[cate]

Goody goody, at last things are moving.  I did not think to suggest a tens machine. my daughter did have a small one to keep in her bag. but  I Have never used one to just recently. I do have arthistic at base of my spine. plus 2 hip replacements. so do understand about the pain a bit.  However recently  my back got a lot worse, and I am now under the physio dept. but whilst waiting, my son gave me his tens machine, and it did help with the pain. doc did say it was my best friend at the time. I assume that what you have bought from America is something similar.
I do hope now the treatment will get somewhere for you, and you are now confirmed as not imagining    the pain.  So glad you had a nurse on duty that was on the ball. right place at the right time it would see,

[FairyNuff]

Hi Cate, it seems as though someone has been rattling cages on my behalf! I got a letter for the pain clinic and when I phoned they said the waiting time is 9 to 11 weeks. When I explained my predicament the clerk pulled out the stops and hey presto I have an appt at 3pm today! Also got an apologetic phone call a couple of days ago saying An orthopaedic consultant can see me next Monday.
So having been in a living hell for 8weeks, I finally really have light at the end of the tunnel.

 The CPM machine isnt for pain relief but for very gentle passive constant movement of the affected knee.
I have a IntraSonic device which I use for other pain ie shoulder etc. Ive never used a Tens machine as Im not sure I could use it with all the metal work in my Knee. Which 'they' think is Ok to be left in place.
I'll let you how my different appts' go.

[cate]

My daughter has had about 4 ops on her knee, very tricky things knees,  and when she has real problems with it her physio does use ultra sound on it,  does help.  I would ask the dr's about the  tens machines,  it is just little electric impulses, but it did help me, and the reason my son had it, was for his partner for child birth, asn she will not take anything at all,  but has long labour and it help no end for their 2 children,  as the last baby was 10lb, they figure enough so will not need it any more, I was very grateful  for itDo hope things are on the way for  yhou, sounds now that the ball is rolling  it has gather speed and is going in the right direction.  So good luck hope the pain real        eases up for you.

[FairyNuff]

I'm back to square one again. Pain Clinic wasn't much help. Saw orthopaedic Consultant on Monday he didnt agree I needed knee replacement. Didn't know what was wrong, gave my knee a good work out after I'd been trying to rest it for 10 weeks! Now in absolute agony. Spent yesterday sobbing my heart out. Utterly demoralised. Not going to post anymore. 

[cate]

Oh I am so sorry, things have gone backwards for you, please do not give up, perhaps we can give you some moral support, and get back to your Doctors, and ask for 2nd oppion else where.     Please keep your chin up, thinking of you.
Cate

[Lieveling]

Fairynuff,
please don't stop posting! You are the only one who can do good things for yourself.

The pain must be really bringing you down very hard, morally speaking. Try and channel that pain into getting back to your doctor and kicking some medical butt !
You have to be seen to - you cannot go on like this - it's not a quality of life at all and you deserve a quality of life. YOu're fighting so hard for  it already.

Get up, dust yourself off and kick some medical butt into getting this problem analysed properly!
Best of luck!

[Gary Anderson]

Fairmuff

Dont give up now! I speak from experience because I have been where you are and indeed still am there. I am in constant pain almost every day. I have to force myself to get up and go to work. However, for my own sanity I have to. Dont stop coming here because the support can last a lifetime.

I dont come here as often as I did but the friendships I made here exist through email to get me through the hard times.

[Amy]

Fairynuff,

I hope you are still checking this site...you NEED too.  There are so many people here who care about you, you need to care about you!  I was where you are now.  Shortly after my accident, I started to have panic attacks. Coupled with the severe pain and so much uncertainty.  I felt as though I was useless to everyone. I would lay in my bed and think about how to kill myself.  I live in Ohio, so AD isn't an option....a good thing now that I look back.  My problem, or blessing is that I have a 15 year old son who I know would be devastated without me...I'm all he has.  Yes, I even thought about how I could kill him, then me, then set my house on fire so someone would find us.  I'm only telling you this because I realized that I needed to get help.  I found a great psychologist who specialized in chronic illness.  It turned me around.  I still have days when the pain is brutal, most days in fact....but I don't take anything other than an antidepressant which deadenes the nerves a bit and Motrin.  I've found more calming ways to relieve my pain.  Sometimes, I light candles and sit in a nice warm bath...other times I turn on my favorite music and close my eyes, or I look at pictures.....anything to get my mind off of it.  I wish you the best of luck and determination....please stay strong and PLEASE talk with a counselor.

[FairyNuff]

Well, a few weeks on and after MRI and bone scan revealing no 'hot spots' I am booked in for an Arthroscopy next Tuesday 22nd dec. Thoughts now are that there is some torn cartiledge in the knee. Given the horrendous amount of pain relief im on it will be such a rlief to get it sorted then will come weeks of drug withdrawel (already had a taster of stopping and I was dreadfully nauseous and felt very very ill).

 Thank to everyone who's sent good wishes, when Im feeling better I'll come back and try to help others and be a more regular poster.

[cate]

Glad you came back on,  you can see that we are here for support, glad things are moving again with scan etc.
How is puppy dog getting on, you know just stroking him can bring you a more settled feeling,              my daughters first dog had been trained originally as a pat dog,  and I know from when I had my own dogs how comforting  they where in bad time So keep strong and keep talking to us,
 Hope you have a good Christmas and that the new year will bring a better time for you..

[Amy]

OH, I am sooo glad to see you back here, I've thought of you often.  Keep fighting....even though I know it can be exhausting.  Good luck with your arthroscopy...I had one done in May of 08 on my right knee and am just waiting for approval to have it replaced...but in the mean time, I have injections of "fake cartiledge" can't think of the perscription name..I have a series of 5 shots over 5 weeks and it lasts for quite awhile to cushion what I don't have.  The grinding of my bones together was nauseating, nevermind the pain..this helps. If it's an option for you I say go for it.

Wishing you a very Merry Christmas and good things in the New Year,
Amy