Author Topic: Farrah's Right Fulkerson TTT 1/8/08, now RSD/CRPS...Left Fulkerson 11/16/10 (Read 227616 times)

Plumb · « **Reply #3375 on:** September 07, 2012, 06:08:58 AM »

Hey Farrah, I have been checking into KG more and more the past few weeks since my left knee replacement. I feel like I have been in Zombie land but when I am here I do check to see if you have any updates. No news is good news I guess. However I was saddened to see that you have had issues with your SCS. I hope you are finding yourself in good spirits and are on the way to healing. Just a quick post to let you know I stopped by and I am thinking of you and hope that you have many months of smooth periods where the pain is reduced.

Also after my TKR I had an irregular heart beat. I had a nuclear stress test that came up with no findings of blockage. The doctors advised the irregular heart beat is due to weight and my chest size. Smaller boobies less weight on chest wall. I am taking magnesium oxide 400 mg 2x a day that is suppost to help with the irregular heart beat. Also I have chronic pain for such a long time the irregular heart beat suggests that pain exists. If I am understanding the doctors correctly. I guess I should do a bit more research on it.. but since my Blood pressure has stablized the priority is being put on getting the ROM with my outpatient PT. As of yesterday I had my 4th visit and my Flex is 105 . Not too bad for three weeks out of surgery.

Hugs to you .. take care

Anne

Clarkey · « **Reply #3376 on:** September 12, 2012, 04:46:58 PM »

Hi Farrah,

Sorry you you are still having ongoing problems with your knees and other parts of your body and bad luck having a fall. Hope the pain eases for you and can get back to normal again.

nickwclarke2012@BhamUK

Brambledog · « **Reply #3377 on:** September 14, 2012, 12:43:19 PM »

Farrah, you are a wonder. I am filled with admiration for your fight to just be you, and cope with all the crap life has thrown at you. I can't believe how upbeat you still are.

I came upon your thread looking for others with RSD/CRPS I have had it in my left knee for a year since an arthroscopy. It certainly is a right royal pain, in more ways than one! Mine has since spread to my left foot, and it's area of activity on my knee has enlarged - to start with I just got the burning skin redness and sensitivity over the front of my knee, with swelling above it of course. This morning I was on the phone for about five minutes with my mum and I looked down as it was burning - my knee was blue from mid-thigh to about two inches below my knee, and all over my knee was studded with vile orange flashes and creases between the swellings.....pretty!

And last night, as well as my knee and left toes burning up badly for the first time in a little while, my right toes and knee were painful and sensitive. Oh it does know how to freak you out, this thing...

Anyway....I just wanted to say how amazing you are really! Keep us updated on how things go for you, and I really hope you recover from your fall quickly. You deserve so much more than you have right now, and I hope good things come soon.

Take care of yourself!

Brams

arkitect06 · « **Reply #3378 on:** September 14, 2012, 04:38:33 PM »

Hi Guys!! It's so nice to see that I have 3 posts in the last week! I didn't think anyone read this anymore!

First, I'd like to give another update! A huge event has happened related to my medical care! My OS and PT that I have been seeing since 2004 have discharged me! To explain, last week I fainted twice in 2 different doctor's offices. On Tuesday of last week I had SI joint injections in my back...when I stood up off of the OR table I tripped, but was caught by the radiologist and the nurse....but then I felt dizzy and fainted. Next thing I knew I was in their recovery room with an IV, EKG, and other things attached to me. The next day I had an appt with my OS's PA for my shoulder. While I was sitting on the table and talking with her, I told her that I didn't feel right. She told me to lay down which on my way down, I passed out. This time I woke up in an Emergency Room with about 10 people in the room rushing around to help me. I had been sick with bronchitis, but still drank TONS of fluids to prevent dehydration, but with my heart condition (atrial tachycardia) it still wasn't enough. So my cardiac electrophysiologist thinks that it happened b/c I was sick.

With all of that, I got a call a few days later from my OS's office administrator letting me know that they no longer feel that they can help me! It hurt me so so badly to hear this b/c my PT (in the same clinic) has been amazing and has helped my back sooooooooooo much!!! My OS has also been amazing, but b/c of my RSD, I am not a surgical candidate no matter what type of orthopedic problems I have. It can spread wherever I would have surgery! The good news is that my knees have been feeling much better...not 100%, but much better...FINALLY! Again, my PT helped with my knees! She has made my back feel so much better with her mobilization and dry needling techniques! The only thing PT hasn't helped is my shoulder. It still hurts so much! The worst thing about being discharged from the clinic is that they don't even want me to come in and say goodbye to my PT and some of the staff that I got to know very very well! When I spoke with the office administrator, she told me that my OS suggests seeing a physiatrist (a doc that treats the whole person, not just one problem). He wouldn't even give me a referral for that!

So the next thing I did was go see my primary care doctor (PCP/GP) and let him know all that has been going on and how concerned I am about my shoulder pain! My PCP didn't agree with seeing a physiatrist b/c of the type of pain/problems that I have. So he called my OS and discussed my situation. My OS thinks that there is a mind-body thing going on and they want me to go back to my psychiatrist. They don't think my problems are mental, but they think the combination of medications and RSD could cause me to feel more sensitive to pain. I completely disagree with that, but I am going to humor them. I have an appt with my psychiatrist on September 25th. My PCP already talked with her to explain what's going on. With this, I have decided to see a physiatrist anyway to see if there is anything he can help me with!!! So I have to routes right now and we'll see where it all goes! I just hope that my shoulder could feel better! It has limited so much of my day to day activities and hurts constantly at times!! It sucks!!!

So I have back tracked with my depression a little, but hopefully I will get better soon! I started an amazing new job just a few weeks ago! Well when I got sick with bronchitis, my boss sent me home for 2.5 days. Well when it was time for me to come back, I fainted. Then fainted the next day and went to the hospital. So b/c I work for a temp agency, she easily replaced me. So now I am without a job or income again and so stressed since I have all of these new doctors appts! UGH!

Anne: Thanks so much for stopping to check for an update!! I am so sorry about your heart beat issues. My atrial tachycardia has caused my fainting and dizzy spells! It sucks having problems outside orthopedic ones! I hope you recovery smoothly from your TKR! It's so nice to hear from you!

Nick: Thanks for your support!!!

Brams: RSD is a tough problem to have!! I appreciate your support...your post made me smile b/c you reminded me that there are still people out there looking for more information on our condition! I can't believe you got RSD just from an arthroscopy! That's awful! I know it can come from even just an ankle sprain! My surgery that started my RSD was an open knee procedure and very complex. I hope you can get proper treatment for your RSD b/c as you may know, the sooner you get the right treatment, the less it will spread. How long have you had your RSD? Where do you live? What type of treatment have you had for it? Thanks again for your support and hope to continue hearing from you!!!

Farrah

Brambledog · « **Reply #3379 on:** September 14, 2012, 06:43:52 PM »

Hi Farrah!

I smiled too

My word, that was a quick reply!

It sounds a bit as though your OS is a bit scared of the RSD and isn't quite sure what to do for the best. I think that's half the problem with the damn thing - even the professionals with all of their training still can't get to grips with it, and once they've tried everything they know they just don't know what to do.....so you get shunted somewhere else. Referring you to your psychiatrist seems a teensy bit like a cop-out, but I could be wrong there $:-\$ All those fainting spells sound worrying though, you are so level-headed!! Hope you're feeling ok now and no more faints.

To answer those questions, lol, I've had it for a year and a month now (cripes, I didn't really realise it was so long) and I live in England. It was about two months before my OS diagnosed me. I woke up from the arthroscopy in truck-loads of pain, as I'm sure you can imagine

, and no one understood why it was so extreme (they found grade 3/4 PFOA), and it took morphine to control it a bit - well, to make me zonk out anyway! I was meant to go home that afternoon, but I ended up staying in for two days. Once diagnosed I started on amitriptyline, and about three days in it really seemed to start helping the deep pain. A couple of months later it just wasn't hitting the spot anymore and the bad pain was coming back so I swapped to Lyrica (pregabelin) which seemed to do the trick. I'm still on that but my dosage has been upped to 200mg 2x a day. Gradually the Lyrica hasn't been working as well, and recently they offered to add in the amitriptyline as well. I declined with thanks and am trying to put that off - the side effects of both together aren't appealing! I've put on quite a bit of weight with the CRPS and pills combined (plus lack of exercise - I was very sporty and active) and have gone up 2 clothes sizes. Grrrr. Lucky i was quite slim when i started this! I try to exercise and control my diet but I'm struggling a bit.

I've never been offered any other types of treatment, but have been to the good ole pain management stuff including a course on meditation and learning to cope.....hmm.... At the end of this month I finally (I've been waiting for this from the start of the CRPS) got an appointment to see a specialist pain physio whose special interest is CRPS. I'm hoping to goodness she knows what she's talking about - my OS, physio, hydro, GP and pain doc all seem a bit at sea, and quite often it's me telling them what it is

My pain doc is completely against nerve blocks and said she can't see much point in trying them. In fact she told me that my next option was Lyrica and amitriptyline combined, and if that didn't work then she'd send me to Bath where they have a CRPS centre. Someone told me that's just learning to cope stuff too rather than treatment as I'm imagining it. Hope that's wrong!

I do worry that I'm not getting enough treatment. My pain doc doesn't seem fussed about it spreading at all, just says that the Lyrica etc will only ever treat the pain, not the symptoms, but I'm scared that it is continuing to spread. I'm especially scared that my right knee, which I'm having lots of OA trouble with at the moment, will be next in the CRPS firing line!

Anyway, enough griping from me. Have a good evening (or morning, I can't remember where you live, sorry!) and I'll keep an eye out for your next news. Fingers crossed for you girl.

Brams

arkitect06 · « **Reply #3380 on:** April 17, 2013, 12:35:59 AM »

Hi Guys! I don't know if anyone actually reads this, but things are better since my last post. A lot has happened though. First, since my last post, I just started with a new PT. He doesn't know me and I fainted yesterday! I don't know what's going on, but I hadn't fainted since my last post! I woke in the emergency room again.

So first, my knees both are hurting, but my right one is worse. That's the first Fulkerson I had back in 2008 that caused my RSD. Anyway, during my FUlkerson, my OS noted that I have a shallow trochlear groove and I am thinking that's why my knee still hurts so much. He did say he may have to correct it, but since I don't see him anymore, I can't follow up with him about it! I don't trust many other doctors here where I live! So I will just live with it until it gets worse I guess!

I am in the middle of switching pain docs which means I have run out of pain meds. I don't want to see my old one anymore b/c his staff treats me horribly and they have a new rule that they will not treat me until my balance is paid off! So I can't even get my tri-annual SI joint injections from them anymore!

So I ran out of my narcotics and am waiting to hear from the new doc about an appt! They have to receive my medical records first. It has been almost 2 weeks since they should have been sent. So needless to say, my RSD pain and stuff is killing me!

That's all I have to say about that right now.

Hope everyone is doing okay!

Farrah

Clarkey · « **Reply #3381 on:** April 17, 2013, 05:03:07 PM »

Hi Farrah,

Nice to see you back on KG again and can see you still going up and down with your knee problems and always good to change pain doctor if you feel he is not being very helpful and understanding. You are entitled to getting the meds that help ease your pain without the hassle that you having to put up with right now.

I managed once again to reinjure my right knee again falling on black ice so back to square one again and was recovering really well from my last scope back in 2009 and managed to fall on black ice 5 weeks before my 1st competitive half marathon and was running 9 miles a day 4 times a week with an average speed of 6 minutes 50 seconds per mile so was gutted when I sustained my new knee injury and now unable to run as I get pain straight away as soon as I try to run.

Hope you can make some progress.

Nickwclarke2013@BhamUK

arkitect06 · « **Reply #3382 on:** April 17, 2013, 07:48:49 PM »

Hey Nick! I am so sorry to hear about your continued knee issues! It's so hard when you are living life and then something like that changes it so drastically!

As for me, I am still waiting to hear back from some doctors about what to do next. I was in the emergency room again today after fainting this morning. I fainted again at the hospital when I was discharged. My spinal cord stimulator isn't working exactly right so my RSD pain is horrible. Today, my SCS medtronic rep was trying to help me with it. At one point, she turned it off while I was standing, my RSD pain spiked and I fainted. Sucks! In the meantime, I am struggling with getting a pain doctor appt!

I went back through some old posts here on KG and I teared up when I read some of my posts! I went through hell just to get diagnosed! I will never forget it! I just wish it was easier to get the right treatment at the right time!

Again, Nick, I am so sorry for your new knee issues! I hope you have a speedy recovery!

Farrah

Clarkey · « **Reply #3383 on:** April 21, 2013, 04:45:01 PM »

Hi Farrah,

Its ok I can deal with my knee problems as I have more important things to sort out so I can get a job helping and supporting Autistic children and young adults live a more fulfilling and rewarding life that they deserve as I feel my milder form of Autism will benefit them in the long run and not ashamed about having Asperger syndrome and can blame Birmingham Social Services for managing my breakdown poorly and did not get any help and support till it was too late and broke the law through no fault on my part 14 months into my breakdown and is a long hard task to overturn my undeserved convictions and getting there slowly. Left my old job last year after being bullied out of it by Line the Manager.

The knee problem just an added problem that should get sorted out as I have a good OS on my side that I trust and respect.

Hope you can ease the pain you experiencing right now and not surprised that you get upset reading through your old posts also get upset reading my posts how well I recovered from my last scope and now looks as if the right knee may need another cortisone injection and hope I can avoid a 2nd scope.

nickwclarke2013@BhamUK

arkitect06 · « **Reply #3384 on:** May 01, 2013, 11:38:51 PM »

I am published!!! I wrote about my story and now can read about it!!

http://americannewsreport.com/nationalpainreport/my-story-i-just-want-to-be-normal-8819688.html

Farrah

Clarkey · « **Reply #3385 on:** May 02, 2013, 02:56:04 PM »

Hi Farrah,

I have been writing about my diagnoses of my Asperger syndrome and hope to get it published as a book and good to share your story with others. I have started to do some volunteering work and did my 1st day today at a charity shop where we raise money for families that have children on the Autistic spectrum by providing funds for sensory and vital equipment in the West Midlands region to families that cannot afford the essential equipment needed for children that have been diagnosed with Autism and Asperger syndrome.

nickwclarke2013@BhamUK

Author Topic: Farrah's Right Fulkerson TTT 1/8/08, now RSD/CRPS...Left Fulkerson 11/16/10 (Read 227616 times)

Plumb

Re: Farrah's Right Fulkerson TTT 1/8/08, now RSD/CRPS...Left Fulkerson 11/16/10

Clarkey

Re: Farrah's Right Fulkerson TTT 1/8/08, now RSD/CRPS...Left Fulkerson 11/16/10

Brambledog

Re: Farrah's Right Fulkerson TTT 1/8/08, now RSD/CRPS...Left Fulkerson 11/16/10

arkitect06

Re: Farrah's Right Fulkerson TTT 1/8/08, now RSD/CRPS...Left Fulkerson 11/16/10

Brambledog

Re: Farrah's Right Fulkerson TTT 1/8/08, now RSD/CRPS...Left Fulkerson 11/16/10

arkitect06

Re: Farrah's Right Fulkerson TTT 1/8/08, now RSD/CRPS...Left Fulkerson 11/16/10

Clarkey

Re: Farrah's Right Fulkerson TTT 1/8/08, now RSD/CRPS...Left Fulkerson 11/16/10

arkitect06

Re: Farrah's Right Fulkerson TTT 1/8/08, now RSD/CRPS...Left Fulkerson 11/16/10

Clarkey

Re: Farrah's Right Fulkerson TTT 1/8/08, now RSD/CRPS...Left Fulkerson 11/16/10

arkitect06

Re: Farrah's Right Fulkerson TTT 1/8/08, now RSD/CRPS...Left Fulkerson 11/16/10

Clarkey

Re: Farrah's Right Fulkerson TTT 1/8/08, now RSD/CRPS...Left Fulkerson 11/16/10