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Re: FRUSTRATED!!!! Pain all day long?
Tacitus #227024 02/09/12 07:47 PM
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Thank you all VERY much! I didn't think I was nuts, but the damned doctors make you feel that way! I am NOT HLA-B27 positive, but exhibit all the symptoms, characteristics of having AS. This is the same Dr who gave a "Tentative" diagnosis 9 mos ago of AS. At that time, I just didn't have enough of the symptoms. Now that I have more symptoms (I had surgery in Oct for Spinal Stenosis and herniated discs L4 and L5) and after surgery the pain remained if not more pain. I was so excited to get to this appt, thinking , "Finally some relief" and for him to deflate that thought crushed me. I just want him to live a month in my shoes. That would be fun, huh?


Todd M. Ankylosing Spondylitis with Sacroiliitis, right lumbar radiopathy, lumbar spondylosis with myelopathy, IBS, anxiety, hypertension
Re: FRUSTRATED!!!! Pain all day long?
ToddM #227026 02/09/12 08:01 PM
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I think our rheumatologists went to the same school of TLC.Mine scribbled my diagnosis of spondilytis on a prescription pad and said to look it up on the internet. I do not know if I have AS because he did not take a simple x-ray of my back. He did prescribe Diclofenac, which is a NSAID, and there was an immediate relief of all my symptoms which included horrible neck pain that I have had most of my life and lasts ALL DAY LONG! Perhaps he could let you try an anti-inflammatory to see if you get relief??? i am on this site today to try to find a new doctor but, because I just went on Medicare, finding that most rheumotologists won't take me. I live east of Seattle but would drive miles to find a good doctor. Good luck.

Re: FRUSTRATED!!!! Pain all day long?
barbara66 #227029 02/09/12 08:34 PM
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Good Luck Barbara! I have tried several NSAIDS. I get relief from large doses of Prednisone. Like 60 mg per day and then coming down to 30 mg for awhile. He put me on 4 mg a day Monday. For a month.....not sure what this is supposed to do, but ok. Naproxen hasn't worked and Mobic didn't provide any relief either. I wish they did. They do seem to help with my hands and feet, but not my back. Only the Prednisone helps. I called my GP today and asked if I could increase my Fentanyl patch (I am on 25 mcg; the lowest dose) because I am taking too many Norco. His office just called back and said no increase and don't take more Norco than prescribed (6) per day. Take 75 mg additional Lyrica though. HELLO? I am in more pain than 75 mg of Lyrica is gonna do! I want them to live in our shoes for a month. Then there would be compassion!! I am sure of it!


Todd M. Ankylosing Spondylitis with Sacroiliitis, right lumbar radiopathy, lumbar spondylosis with myelopathy, IBS, anxiety, hypertension
Re: FRUSTRATED!!!! Pain all day long?
ToddM #227031 02/09/12 08:47 PM
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Todd,
I would get the notes from both of your drs., and see what they have put down. It will give you a clue, whats going threw their minds.
Maybe you might want to get rid of both of them?
As for asking about stronger pain meds over the phone, not such a good idea. Make an appt. and deal, face to face.
Take your wife, and the drs. need to know, how the pain is effecting your life.

Re: FRUSTRATED!!!! Pain all day long?
ToddM #227032 02/09/12 08:47 PM
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Not sure if you already mentioned this, but I assume you have already had a MRI of the SI joints? If not, it seems to me that this is your next step. A number of people on this board were diagnosed definitively based on that. Also, many doctors will not officially dx someone with AS unless X-rays show fusion.
Also, are you sure that there aren't any other herniated discs that could be causing at least some of the pain?
Jenny

Re: FRUSTRATED!!!! Pain all day long?
ToddM #227036 02/09/12 10:00 PM
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Tod, I would recommend that you ask your GP to refer you to a pain management specialist, since he is uncomfortable giving you enough meds to control your pain.

Ask your Rheumy about the TNF blockers. They offer a great chance at taking away your inflammation and pain, with the least side effects. Many of us on this forum have done well with them.


Donna
Suffering since a teenager.Dx with AS Dec 2009. Dx with ulcerative colitis 1998, both knees replaced 2006. GP said I had "some kind of inflammatory arthritis" 25 years ago. It has taken 50 years to get a Dx.

Mobic, Nexium, Naproxin, Lipitor, 6-MP, Nexium, Miacalcam, MSContin and 2 Norco for break through pain
Re: FRUSTRATED!!!! Pain all day long?
avonldy #227074 02/10/12 01:51 PM
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I agree with Cindy's suggestion of meeting with the doctor face to face and bringing your spouse with you. It is much harder for a doctor to say no when you are sitting in front of them and they can see the pain and suffering in your eyes. Over the phone, they can easily blow you off, because they can not see how this is affecting you.

I find it interesting that your rheumy initially said possible AS, but now seems to be blowing it off. I would question him as to what changed his mind. Is it solely because of the fact that you have pain all day long? As I said previously, I think you need to find a new rheumy. In the interim, finding a good PM doc will help you to manage your pain better. GP's often are not comfortable when it comes to prescribing more pain meds, so you would probably be better off seeing a PM doc, at least until you are able to find a better rheumy. Prior to being diagnosed, I was seeing a PM doc, but I was seeing him for injections. I was still under the care of a neurosurgeon, so they were the ones writing my prescriptions for pain meds. Now that I have been diagnosed, my rheumy has been great about writing scripts. However, I do not take a lot of pain meds, so perhaps that is why he has no problem doing it. My favorite "pain med" is Prednisone...works like a charm! Too bad we cannot stay on it long-term. I think the fact that you had a good response to Prednisone indicates some type of inflammatory process.


Kim - age 33, married with 3 children
DX: Psoriatic Arthritis, HLA B27+
Meds: Otezla, Naproxen PRN, Prednisone PRN
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