Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group PT and Pain Clinics

Hey all,

As, things have gotten tougher and tougher on me as far as being able to set in front of the computer amongst a lot of other things it takes me a while to get around to making post.

I started going to a pain clinic about two months ago until I can find a surgeon to get some of the pressure of my spinal cord from the ruptured disc in my thoracic spine and neck. I can live with the lumbar for the time being, but when it feels like you are sticking your body against at least 110 volts every time you move something needs to be done.

I went from my oxycontin to fentanyl patches which really was not a big problem except for the with draw symptoms from taking oxycontin for over two years. I also started some PT again trying to learn to walk without losing my balance because of the gait ataxia and nerve damage from the ruptured disc. Having no reflexes left in my legs, ankles or feet and not much feeling makes things kind of tough.

Both shoulders are rubbing bone on bone, but more so my right one. I sleep what little bit I actually can on my sides because I have never been able to sleep on my back or stomach and as soon as I more my arm the wrong way it wakes me up.

I can no longer raise my feet passed a level position and the therapist says the tendons to my toes are the only reason I can get them that far. Since Feb I have been fussing about my right ankle (the better of the two) locking and causing pain. Before AS and my mechanical back problems my ankles always popped when I walked. If you have ever had the feeling your ankle needed to pop you know what it feels like when it locks up now. I keep telling them them need to x-ray it to see if my AS has caused an overgrowth and I keep getting told the doctor needs to look at your ankle and heel because there is also extra pain in the right heel, like multiple spurs. I asked my therapist the other day what doctor am I suppose to be seeing their’s or mine because they have yet to tell me. She said she would let me know next week as I only see her two more times.

The doctor there who put me on the fentanyl and my therapist has ask me several times what my pain level is when I go in. It stays between a 7 and 9 and their 1 to 10 scale but the doctor says she feels it may be from the PT so I have to wait until I finish PT before she will add any more pain meds. The extra movement of the PT may be helping in raising my pain level but when I started I stayed between a 7 and 8 on the scale. I have been keeping a daily record on what I do and the pain level which in my opinion with them being a pain clinic should be coming down some at least. Even, if it takes a break through drug to get me through the rougher times. I see the nurse to get my refills and therapist this week to go over my home exercise course I am suppose to continue like I have not been doing practically the same things plus a few more.

After dealing with the mechanical back problems and AS for over 20 years now I think I know quite a bit about my body even though they treat me like all of this is something new and I don't know anything because I have not been through their training. They don't take into account my left leg has been numb for 20 and I had to teach my own self to walk without any type of support once before after using cane, walker and knee brace for three years before I laid it all down and worked my butt off to walk without any PT or doctors help.

Now is it me or does anyone else see a run around going on here? Would any of you continue going or would you give it up and keep looking for a surgeon. I mean it is a pain clinic and they have the ability to prescribe drugs strong enough to get the levels down to where I could tolerate them better.

I am going to try to start posting more again and update my webpage. With my youngest is a senior this year I bought him his own computer and networked it to mine which has a cable modem, plus I have a laptop to which I only need a network card to be able to connect to the internet from the bed, floor, wheelchair or regular chair, wherever I am the most comfortable at the time.

Hugs,
Brent

Brent, I'm so sorry to hear of all the pain you suffer. I think they should give you more or stronger meds, because that will help make you more compliant when it comes to doing your work outs.

My thoughts and prayers are with you...

Brent
I am not a doctor,but be REAL carefull that the pain clinic staff has a Neurologist to consult..The wrong exercises could cause non reversable damage..PT is going to be painfull,but you know your body better than most doctors..If exercise causes pain which feels like having a root canal with no anesthesia,you probably need surgery..(just my 2 cents worth)

Take care,God Bless!!
David R

Hey Brent,

I don't really know what to say except I am sorry things are so rough for you right now.

You are right, they should give you whatever you need to help with the pain, PT isn't going to help with grinding bones or fused joints some things are just past the point of being helped.

Are the patches working at all for you, they really help me.

I hope you will have better days,

Lisa

Hi! Im a little fussy on why are they making you wait to get neck surgery. The longer they wait the more chance of permant damage. Ive had 2 neck surgeries and the first was my fault in waiting. I just had not a clue as to what the hec was going on so like a jar head I waited about 6 weeks before going to doctor. I have nerve damage to part of my left hand. My one finger still sometimes feels like and electrical current going down it. My second blown disc was really bad cause when it herniated there was alot of bone fragments really close to spine. I really dont understand about these pain clinics. My daughter went to one. They finally after about 6 weeks just told her well if were not getting you out of pain then you might as well not come back. She went to orthpedic surgeon and had mri dont. She had herniated disc. She has had it operated on last month and most pain is gone. Well hope I havent rambled on too much. Hope you can get some relief soon. Take care>>>>>Connie

Hey Brent-
Sounds like they just want to give you pain meds...that and therapy would probably be what a pain clinic would do...I think it's great that you walked on your own, just laid down the walkers and braces and did it...not many of us could handle that...

It sounds like the pain clinic is a temporary patch until you get whatever surgery you need for the disc, I hope you get some sort of relief from the drugs...I'm taking generic Vicodin right now for my fractured collar bone and it has relieved pain for awhile, while making me incoherent...it wore off after a "nap" tonight which is why I can type now!! Lol....but the directions said a pill every four hours...now how will I do that while sleeping (I hope)??

I think I would at least keep going to the pain clinic, even if the drugs were not working, just to gain some info, while keeping the search on for a surgeon...and get second opinions, maybe even check out another pain clinic in the area, if there is one...

hey, hang in there, you rock
Peace
Linc