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Hibee
Forum Moderator


Date Joined Oct 2008
Total Posts : 2125
   Posted 8/12/2012 8:30 AM (GMT -6)   
Hi All

I have been referred to my local pain clinic at the hospital by my doctor here in the UK. I have been having chronic back pain for a long time now caused by Scheuermann's Disease.

I am on a couple of medications for pain and have done a course of physiotherapy and acupuncture but nothing seems to have helped in fact my pain has got worse. I have a lot of anxiety so that is not helping the situation.

I was wondering if any other members have been to the pain clinic and what was involved and did it help?

Hibee
I try not to worry about the future -- so I take each day just one anxiety attack at a time.

ANXIETY & PANIC FORUM MODERATOR

Diagnosed with:- Asperger's Syndrome, dyslexia, gad, sad, ocd, depression, reactive arthritis and Scheuermann's Disease (Adult)
Medication:- 400mg Lyrica, 15mg Escitalopram, Serequel 25-50mg, 5mg Diazepam Naproxen 500mg, Co codamol 30/500 x 6.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 3066
   Posted 8/12/2012 3:03 PM (GMT -6)   
Hi there Hibee -

Sorry you are having so much trouble. I am very happy going to a pain clinic, but I have the advantage of seeing the same doctor each visit, and I know some people see nurses or different docs all the time. I insist of seeing the same person so I don't get different or conflicting treatments. Nurses have their place, but I want the most educated and experienced person I can find to treat me.

My pain clinic is also a rehabilitation clinic. It's more than just an anesthesiologist giving injections, although that's part of the available treatment. I went to one clinic where the doc had to keep running around taking care or anesthesia for surgical patients.

You should expect to get drug tested at any time, normally. You should also expect to sign a contract agreeing to get all your pain meds from only the clinic doc. Maybe your local clinic has a website. Some do!

I haven't had outstanding success with phys therapy, but insurance in the States pretty much insists on trying that first. It's not a bad idea really. I won't do acupuncture because I don't believe in it - but some on the forum seem to have had success. Don't just listen to me!

Hibee
Forum Moderator


Date Joined Oct 2008
Total Posts : 2125
   Posted 8/12/2012 3:08 PM (GMT -6)   
Hi

Thanks for the response. Not sure what to expect so good to here from someone who has attended a pain clinic.

Hibee
I try not to worry about the future -- so I take each day just one anxiety attack at a time.

ANXIETY & PANIC FORUM MODERATOR

Diagnosed with:- Asperger's Syndrome, dyslexia, gad, sad, ocd, depression, reactive arthritis and Scheuermann's Disease (Adult)
Medication:- 400mg Lyrica, 15mg Escitalopram, Serequel 25-50mg, 5mg Diazepam Naproxen 500mg, Co codamol 30/500 x 6.

jjcaddell
New Member


Date Joined Aug 2012
Total Posts : 7
   Posted 8/12/2012 4:04 PM (GMT -6)   
Do you have to go to the clinic you were referred to?  If not, try to do as much research as you can to find a good pain management doctor.  Look on the internet, etc.  Some sites have patient reviews on them.  I agree with the previous poster.  I like to see the "top dog".  I couldn't get to see him at first because he was so booked up.  I have to schedule my appts 2 months in advance to see him, but it's worth it.
 
Sorry for all of your struggles as I have been through most of the same things.
 
Very good luck to you!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 23553
   Posted 8/12/2012 8:04 PM (GMT -6)   
I am a big believer in the physical therapy portion of this conversation. I am a patient with advance prostate cancer that underwent a lot of physical and nerve damage from a bout of faulty radiation treatments. My oncologist is my PM, so we work together on the medicinal side. After my last major surgery, I started going to regular PT for about 3 months, but they weren't equipped to deal with oncology cases. For over a year now, I have been going to an Oncology specific Physical Therapy program. What huge difference that has made, as they know how to deal with someone with ongoing cancer and cancer pain and damage.

I use to go 2x a week, but had to reduce it to 1x a week. It's expensive, but my insurance pays 100% of the cost with no co-pays. They feel I will have to continue to go indefinitely, as my conditon is considered perm. in nature.

A good PT program, if available to you, is well worth looking into, in my opinion.

My best to you,

david
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incont & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA 4/12 = 37.x
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries
Member of Prostate Cancer & Chronic Pain HW Communities since 10/2008
“I live in the weak and the wounded” – Session Nine (Movie)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 10590
   Posted 8/12/2012 9:00 PM (GMT -6)   
It really is your decision on whether to stay in a clinic setting or not. By staying in the clinic setting I am assuming your physical therapy and dr is all under one roof which could be a convenience type thing. Some clinics have their different specialists in the clinic too. I have no idea how the UK puts their clinics together. Just about everyone here at the forum is under the care of a PM dr. They are trained to handle pain ad seem to have a better handle on it than say a primary care physician.

Have you got an appt scheduled to see your dr any time soon? If not perhaps you can call and get an appt and go in and see him and let him know that your pain is not under control and just ask him to help you and ask what he can do to help you.

I hope you can get some relief soon.Take care....Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

Hibee
Forum Moderator


Date Joined Oct 2008
Total Posts : 2125
   Posted 8/13/2012 2:46 AM (GMT -6)   
Hi

Thanks for all the responses. I just finished a 12 week physiotherapy course which has not helped with the pain but the physiotherapist was not familiar with Scheuermann's so I am hoping the pain clinic will have a better idea of an action plan.

I am open to try anything as I just really need to reduce the pain in my back as it is making me depressed. As far as I can make out they have a selection of specialists to deal with whatever comes up but I agree it is always good to keep seeing the same person.

I am waiting to here about an appointment date the NHS is known for long waiting lists. Luckily I have a very good doctor in the meantime who is very helpful.

Thanks Again

Hibee
I try not to worry about the future -- so I take each day just one anxiety attack at a time.

ANXIETY & PANIC FORUM MODERATOR

Diagnosed with:- Asperger's Syndrome, dyslexia, gad, sad, ocd, depression, reactive arthritis and Scheuermann's Disease (Adult)
Medication:- 400mg Lyrica, 15mg Escitalopram, Serequel 25-50mg, 5mg Diazepam Naproxen 500mg, Co codamol 30/500 x 6.

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3541
   Posted 8/13/2012 4:56 AM (GMT -6)   
Hey there...

Things are so different here in the US as far as all the state laws and the DEA (Drug Enforcement Agency) regulations that surround pain management. I think you will have a much easier time of things over there.

It's really about finding a Dr. who will help you develop the best comprehensive pain program for you. The more modalities you use, the better. This way you are never relying solely on a medication to get your pain levels down.

Keep us posted on how it goes:)
SB (Snowbunny) and the pup that snores (my yellow lab:))

3, two-level, cervical fusions over the past 11 years. The last one was anterior and posterior with lots of fun titanium!
Still have active herniations along with knee problems and another Morton's neuroma in left foot.
I try to find joy in each day even with chronic pain:)

Hibee
Forum Moderator


Date Joined Oct 2008
Total Posts : 2125
   Posted 8/13/2012 5:01 AM (GMT -6)   
Hi Snowbunny

Yes I think things are quite different over here I will keep you posted with how it goes.

Hibee
I try not to worry about the future -- so I take each day just one anxiety attack at a time.

ANXIETY & PANIC FORUM MODERATOR

Diagnosed with:- Asperger's Syndrome, dyslexia, gad, sad, ocd, depression, reactive arthritis and Scheuermann's Disease (Adult)
Medication:- 400mg Lyrica, 15mg Escitalopram, Serequel 25-50mg, 5mg Diazepam Naproxen 500mg, Co codamol 30/500 x 6.

Fusiongirl
Veteran Member


Date Joined Apr 2012
Total Posts : 581
   Posted 8/13/2012 12:37 PM (GMT -6)   
Hibee

Hi there, I am from the UK also.

Well my experience from pain clinics in the UK is not good and most pain management doctors would admit that. The funding is really poor. The powers that be seem to think that pain management only gets funding if there is money left, otherwise they get nothing.

I know it may vary from region to region but on the whole pain management is poor in the UK. I was referred to pain management after I broke my leg in 2008, and had problems with healing etc. my orthopedic consultant requested an emergency appointment but I still waited six months. The care at the clinic was excellent, the doctor was amazing, very caring and helpful. My first appointment lasted half an hour, she took a very thorough history and discussed what kind of pain relief I had tried before, what I was on etc etc. There was a sign in the waiting room that stated that they would always believe your pain and how if affected you. There was no question of contracts or urine checks etc.

The first problem came when I went to make my first follow up appointment, the pain doctor said she would see me in 6-8 weeks. However at the reception desk I was told that the first available appointment was in six months time. When I mentioned the 6-8 weeks, she laughed and said that that would be in an ideal world, and the NHS is far from ideal at present. I was told I could request a cancellation, which I did, but I still waited six months as there is such a long list of patients on the cancellation list. On one occasion I had to cancel an appointment and the replacement appointment was for a year ahead. It was at that time I decided to go privately!!

As far as what is available, well that is very different to the US too. Medication such as opiods are offered ie most pill medication. They will offer injections, but again the problem lies in the waiting time although that was a bit better i think i only waited about three months for injections and much less time for follow ups However help such as SCS and pain pumps, I discovered are very hard to get. I asked about SCS, I was told that I may benefit from that but there is only funding for a very small amount per year. Private insurance will not cover SCS and they are very expensive, both to implant and maintain. I also asked about a pain pump as I liked the idea of less medication and medication being more 'targetted' but was told that it was only really used for palliative care patients. I did manage to get a course of hydrotherapy from the one physiotherapist that was there to cover all the pain clinic patients. I thoroughly enjoyed that, found it so helpful, but I only got six weeks initially and because it was helping me they authorized extra time, another two weeks lol!!!

The poor service is down to poor funding. I would say that I think we are very lucky that we don't have to jump through hoops, the way our US friends have to. But the service we are offered is certainly not on a par with theirs. It may be just that I live in a bad area for funding, I am in Aberdeenshire. Please feel free to ask me anything you want. I will pray and hope you don't have to wait too long.

Take care

Jane

Hibee
Forum Moderator


Date Joined Oct 2008
Total Posts : 2125
   Posted 8/13/2012 3:01 PM (GMT -6)   
Hi Jane

Thanks for your response and good to get a UK perspective on things. I phoned up the pain clinic the other day just to make sure they had received my referral and she thought I was trying to jump to que lol she told my that the waiting list was long.

I live not far from Edinburgh so I imagine the list will be big. My GP has been good and we have tried a number of medications and physiotherapy but not found anything which has helped with the pain.

Hibee
I try not to worry about the future -- so I take each day just one anxiety attack at a time.

ANXIETY & PANIC FORUM MODERATOR

Diagnosed with:- Asperger's Syndrome, dyslexia, gad, sad, ocd, depression, reactive arthritis and Scheuermann's Disease (Adult)
Medication:- 400mg Lyrica, 15mg Escitalopram, Serequel 25-50mg, 5mg Diazepam Naproxen 500mg, Co codamol 30/500 x 6.
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