NeuroTalk Support Groups - It's Good To Have You irljenn !

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- - It's Good To Have You irljenn ! (https://www.neurotalk.org/scs-and-pain-pumps/136396-irljenn.html)

It's Good To Have You irljenn !

Hello Jenna!
If my math serves me correctly (thanks to Jackie! :)) it is about 1:00am your time as I type this!
I am so glad you and Jackie hooked up! She has been a wonderful blessing ever since the day she logged on to NT! Her and I have much in common. You'll find her to be a very wonderful friend!

My heart went out to you when I read the reason you've sought us out.
You FELL! My daughter is 8 months pregnant, and I can only imagine how horrible this was for you! I'm glad your baby is doing ok and that you have such a wonderful supportive husband.
I'm so sorry for the pain you are battling however.
It's so important to have a good support system when you are up against a battle such as yours. Sometimes it's hard to see things in a positive light when we are racked with pain.
That's why we all reach out to one another and it is so amazing how much people reallly do understand and care. There are NO geographical barriers and we are only one click away from each other!
I hope you are feeling 'at home' here. Holler if you have questions or need help in finding your way around.

I think you have to aquire about 20 posts and then you'll be able to send PM's (private messages) etc.....so don't get frustrated if you aren't able to do some of those things just yet.
It'll be great getting to know you. We are like a big family here. :grouphug:

I hope the Fentanyl patches are working ok for you. What strength does your Dr have you on? They worked wonders for my burning neuropathy pain.

So glad you're here!
Looky! :) I found a pretty avatar from Ireland!
http://dl7.glitter-graphics.net/pub/...v5jv50g8rr.gif

Rae
:hug:

Thank you so much Rrae for setting this up for me !!:winky::winky:

Its 6.30 am irish time as i type this and having been awake all night this time not from the pain as this seemed to be under control with the patches but the itch all over my body has kept me awake. I had to get up to take a shower as the itch was driving me insane so i think i must be allergic to the medicine. I have just taken off the patch, i read the box Rrae and it says 50mg every hour. Rrae as you were on these patches did you ever have a reaction like this when you started? I kinda felt a little drunk last night with them on but the burning pain was gone from my pelvis for the first time in weeks and i so did not want to take the patch off. I would just be interested to know if this is a normal reaction as you said in your post it took you a while to get used to these. I am going to call dr this am and see if there is anything else i can take.

I know when i logged onto this site and read the posts over the last few weeks i searched for stories like mine to see if anyone was like mine and i could not believe how many people are living with this dreadful pain. My life was so normal 2.5 years ago I had one daughter hubby who was just over 2 1/2 years old , 2 dogs and a great job and social life. then on feb 11th 2008 at 28 weeks pregnant i slipped and fell in work at 8am unfortunately the cleaning lady left polish all over the bathroom floor and in 2 seconds my perfect life came to an end. As i was pregnant at the time 28 weeks with my second IVF baby my immediate fear was , was my baby ok? i was taken to hospital by ambulance and spent the next 10 weeks before my daughter was born by c- section being made feel guilty by medical staff and myself for needing pain relief . my injuries at this time were disc damage to my back a broken arm and a torn hamstring in my left leg.

on the 21st of april my katie was born perfectly healthy at 8lb 2oz she was a big girl and with the help of my mother, father and hubby i managed to care for my baby but was in such dreadful pain constantly. about 6 months after the accident having gone through test after test on my leg and back i was referrred to a pain specialist and had blocks and rhysotomys done for my facet joints but despite not being able to walk without a crutch my leg remained a mystery to them all. I received PT every week and still do and eventually my dr sent me to a knee specialist ( nothing wrong with my knee it was my whole leg) I had an MRI scan done but as i could not straightn the leg it was completely contracted, the results were inconclusive anyway this dr told me after taking over 225 euro from me there was nothing wrong with my knee. I told him i never thought there was it is my hole leg either way he just looked at me as if i was mad and sent me on my way.

I returned to my pain dr and he said he would give me a nerve block for my leg and did another block on my back but told me at the same time that he thought i should see a pain psychologist re my leg! after i had the block done I never returned as if your pain dr thinks its all in your head what hope did i have. this all happened in march 2010 .

I have a very supportive GP who continued to support me with pain relief and did not think it was in my head but suggested i have iso kinetic testing on my leg. I did this in May this year and the PT who did this test was shocked at my story and shocked that i had been left like this my results to this test were that of an 85 year old woman. He asked me to come back to him so he could do some traction and try a few things. he had worked in a nursing home at one point in his career and dealt with old people who had contractions in there arms and he used to treat this with casts so he decided to try and straighten my leg by putting in in several casts over 10 weeks during july, august and september this year. this was dreadfully painful but now with a leg brace on daily my leg is straight and no longer contracted but the pain never left. He also started to note that i had no hair growing on this leg as he would take the casts off, and the colour difference between both legs and size difference was easy to see. he asked me to see a neurologist but i kept refusing as i said it's no fun seeing drs who think its all in your head but he kept at me and also contacted my gp so eventually i gave in and saw this dr in the middle of september. I was sent for a bone scan, sweat test and sensitivity test a few weeks later and in early october 2010 i was diagnosed with severe crps in my left leg.
So i finally had a diagnoses i was not going mad !! immediately this guy suggested that i would get great relief from a dorsal spine stimulator and after another visit with my list of questions i decided to go for it so the triall is booked for december 2nd with full implantation booked for 9th of december once the triall is deemed successful. i have my physcological evaluation next monday so once they dont think i am mad i guess it's all symtoms go.
I am so very grateful all ready for the support i have received from this site. i tried to join the irish chronic pain organisation and was shocked when yesterday they told me if i wanted to post on there forum i would have to pay 22 euro per year for the privalage!!
I know i am lucky towards most people on this site from diagnoses to installation will only be 2 months in total but it took way to long to get that diagnosis and nobody like to be made feel like a liar, i felt like crying at some of the stories i read like Mark's amazing story and SMAE's story . but all of these stories and recoveries like Jackie's and RRAE give me hope that maybe in a few months time i too will be more mobile and in less pain.

Thank you for letting me share my story so far and I look forward to getting to know you all.:grouphug:
I am shocked i have typed all this i had no intention of doing that but it actually feels good to have shared xx jenna

Good Mornin! (6:00am my time)
I have much more to say in response to what you shared (thank you for sharing your whole story!)
But i first wanted to respond regarding the Fentanyl patches, in case you happen to log on here before you talk to your Dr.
Yes, it is a very powerful opioid med, intended only for those who are already opioid tolerant. Maybe he put you on too high a dose too soon. Maybe he could lower the dose to the 25mcg patches.
Also, Benedryl is known to take away those itchy feelings. Make sure you run this by Dr tho. Or there are other options that can counter those itches.
The 'drunk'/sleepy feeling is normal, but, again, (depending on your body size and tolerance) he might have given you the bigger patches, when the 25's may have been a good place to start and build up from there.
The MAIN thing is the fact that the med DID take your horrible pelvic pain away! wow!
If you had an allergic reaction, you may have gotten hives and had trouble breathing.....but the all over itching is a pretty common side effect with stronger opioids......
I'll be anxious to hear what your Dr recommends....
TTYS
Rae
:hug:

Hi Jenna

Good to hear from you. Wow that is some story. How frustrating it is to go to the Doctors and them to tell you 'eh sorry there is nothing wrong with you'!!!!!!

Initially I met with a great Spinal Surgeon in Mater Private.....and he was just SOOOOO nice and considerate. He helped me both physically and emotionally. He even made sure at one point when I had to have further tests(Id lost 3 stone in weight all of a sudden)to rule out tumours he sent me to the Bons so that I wouldnt have to pay any further charges!! He has been so kind to me. He still keeps in touch even though Im under the Pain Management Clinic now. He even visited me in the hospital when I had my implant done.

Its sounds like your GP is a good person too. You do need someone like that to help you and let you know you are not going CRAZY!!!!....the cheek of some to even suggest that its all in your head. Back pain is a curse. You could look the healthiest person in the world and no one every know that you are suffering, because on the outside you 'look' ok, whereas inside YOU ARE SCREAMING WITH PAIN:eek:

I hope all goes well for you on Monday, which I know it will. You will be on your way for implant in no time;)

I had Lidoderm patches, which at the moment Im trying not to use. I did find originally that they felt a bit itchy but only at the actual site. So I was told to take an antihistamine which did relieve it. After time I got used to them, although I didnt find them that good....but that was me!! As Rae said, ask your Dr and get it sorted as you dont need that on top of everything else.

I read what you said about the Irish Chronic Pain ***.....I signed up to that after coming on here as another poster said they were on it. I just signed up but never knew about the charge:eek:Disgusting to think that they would CHARGE! anyway I never got much feedback, it appeared that it was quite dormant. Not like here. You will always find someone who will/can help you as much as possible. Everyone is so friendly and comforting.

Take care Jenna and keep us updated

Jackie:hug:

Rrae and jackie thank you both for your responses.
Rrae i had not read your post before I called my GP but your response was spot on and he is going to give me a lesser patch and build me up and when I go down later to pick up the perscription I will ask him about the tablet. It was all over itchy not the site , so it was good to hear about the hives etc as it gives me hope that i may get back to that pain relief in the next few days. I have been left with the worst headache in the world after it but i guess that's the lack of sleep also.

Jackie
I emailed chronic pain ireland and asked them when and why they charged people to use the chat forum and suggested that I thought that was one for JOE DUFFY ( radio presenter) anyway glad i refused to pay the money to them and still no email back as a response maybe I will email joe duffy!!!.

Hope you both have a lovely weekend and thank you for everything so far, I will update after my MENTAL assessment on monday!

Quote:

Originally Posted by familyhealy1 (Post 709834)

Jenna Im sure Joe would be delighted with your email;)...Well as I said I found it quite 'boring' to say the least as no one was forthcoming with information. At least here we have LOTS of different views. Its relatively new in Ireland too. My rep comes from England. Where will your rep be based? Mine is St Judes Medical in England..
Hope you have a painfree weekend and those patches work without the itch.

Take care and good luck on Monday

Jackie :hug:

Hat's off to your GP!

I'm impressed with your GP! He doesn't mess around when it comes to pain and that's awesome!
Here in the states, we have the DEA breathing down so heavily, most Drs are very conservative when it comes to opioid treatment.
I hope the itching isn't too bothersome. With the lower dose, I bet you'll adapt and be very grateful for the pain relief!
You might want to make sure you eat prunes! :o
Constipation can be quite frustrating, but I tell ya, these side effects are worth it to me to NOT have to deal with that maddening horrible constant burning pain. I about lost my mind.
Even if the pain is only a '4' on the pain scale, it can seem like a '10' when it is chronic and constant.

Your story is absolutely heartbreaking about how your life changed in that one split second that you took that fall! And being pregnant, I'm sure you were being so careful and yet the floor was slippery unbeknownst to you :eek:
And all you've been thru in trying to recover from that incident! All those casts! And yes, the humility of having people give the impression that our pain is being exaggerated. I just hate it that so many people suffer needlessly when there is plenty of pain relief to be had.......seems we get outnumbered by the recreational drug users though, so with it comes the 'bad name' . boooyah.

Motherhood is such a wonderful blessing, yet you've had a price to pay.
Just doesn't seem fair.
You are strong and you've got alot of things going for you, so do your best to remember that, especially when the 'bad' days roll around.
You've got a great doctor!
Wish they all could be like that! :rolleyes:

Have a great weekend
(((Hugs))) from across the pond,
Rae
:hug:

Hi Jackie
I have no idea where my rep is from did not know I even met a rep but I guess I will but dont know where the medtronics reps come from but have added this question to my list and will let you know when i ask on monday . love the info i am getting from this site as it is answering questions i had not even thought to ask!
Rrae
yes i am blessed with a great GP he does not like to see people in pain and in 2.5 years has never asked me to try and reduce as he knows i could not be without the pain relief. He also sorted by disabled badge for the car which means when i do go out at least i can park closer to where i am trying to go. the governmnet here also assess people for there disability for a disability pension and i am assessed at 60% disabled towards a person of my age which is 38. I know my great life was wiped out very quickly but I am still a happy person I started college 6 months after my accident as i was unable to just sit here feeling sorry for myself so i am in year 3 of a business degree and also decided to study the irish language as an elective so these things as well as kids stop me from having too much time to think about how bad things are sometimes. The gp did say to me yesterday that i was not to be afraid to come talk to them if i did feel i was getting a bit down as he said it's the pain that gets you depressed and the level of pain ur in not me getting down but he just did not want me feeling like a failure if things did start to get me down which i suppose is good to know. he did think the next few months are going to be tough on me mentally as well as physically. I read on someones post that you can't drive for a while after the scs is done about how long will i not be able to drive for can you tell me?
as for pain releif today my hubby got home to late from work to pick up the script so things are not great tonight as the patch from yesterday has left me still feeling a bit crappy but he will be able to pick it up first thing tomorrow and get me sorted. ok i am off to my leaba now need to try and catch up on a few zzz's so talk soon and thank you for all ur support and for letting me off load some of this on this site.
jenna

Hi Jenna when I was about 5 weeks post surgery I asked my pain dr bout driving. As it is I'm not good with the driving as regards my back cos I can't sit too long plus the clutch is a problem too so can't drive to far hoping to get a new automatic in the new year ;). Anyway my dr said I could drive , this was about week 5. So long as I was comfortable and not to do too much twisting etc. Which of course I can't even turnaround to reverse thank God for mirrors ;). I know some posters here were driving even sooner that that. Really does depend on how ur doing yourself with your recovery. Hope that helps. You spoke of disability pension. I hope you are getting it. There is a medical. Isn't there always. But you certainly would be entitled to it. I didn't understand what you meant that your only60%. Its never easy is it. I hope you get thru the might ok and hopefully get a good night sleep

Take care

Jackie:hug:

thanks jackie for the info re driving. with the disability pension they go in levels of payment and they have me assessed as 60% so i have been receiving the pension for about 1.5 years now. yes there is a medical to go through every six months but not difficult once you bring your drs reports with you. they just have it in a part of town where there is no parking which is so irish!!. The car i got is a citroen picasso which is automatic but the stick for changing from reverse to park to drive is on the steering wheel there is also nothing between the driver side and passenger side so you can stretch out your leg on journeys and the handbreeak is a button on the dash so makes things so much easier for driving parking etc work did buy me a very nice car about a year ago and even though that is automatic also i cant drive it as its low down so have to say this was a great but for us.