Help with psoriatic arthritis, Sacroiliitis, and pain meds please!

[absmom]

I posted this on the pain management board earlier today and have gotten some views but no responses. I figured people from the back and arthritis board visited that board as well so I would just kill all the birds with one stone. Guess not. I am going to post it here and on the arthritis board now in hopes for some information.
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Ok i have a long story here with several questions that i am now typing for the second time because when i tried to submit it the first time i forgot a subject line and lost it all!! Grrr!!!!!!
I need to give a little background so you can understand everything about my present situation. I'm a 30 yr. old female, married, with a 5 yr. old daughter and 2 stepchildren. When i was 22 i was diagnosed w/ endometriosis and had a lap. 2 weeks after the lap i was screaming in the most excruciating pain i'd ever felt in my right kidney. Went to ER, was knocked out with demerol, and admitted. Doc says test done prior to my lap showed a small stone the size of a dot on a piece of paper the size of a pencil tip and that it definitely shouldn't be causing pain like that. I never passed anything, after a few days, was dismissed. 3 weeks later, exact same scenario occurred, was admitted again, this time they put a kidney stint in place. Had it about 10 days and then when they took it out i was almost immediately in the same horrible pain. This went on for days...after constantly calling the doc's office, he agreed to do an ultrasound, which ended up showing a large growth attached to my ureter and my uterus, causing the ureter to swell and mimic the pain of a stone. This was less than 8 weeks after my lap. They did major surgery to take the growth out which was not endo related. I didn't have insurance and ended up filing bankruptcy over all of this and then i went a number of years with no treatment, until I married at age 25 and got insurance. Ever since that initial time I have experienced this kidney pain during ovulation, the week prior to and during my period. The only time it has went away is when i was pregnant with my daugher. Spent the last couple of years having a every test known to man done, incuding 2 different laps, by 2 different docs, both saying i do not have endo, and 1 saying he didn't see any evidence that i ever did. Hmm...wonder what in the heck that first doc did in there! In my mind, the hormonal relationship my kidney pain displayed made endo seem like the most logical scenario. So we finally went a few months ago to a doc at the Cleveland Clinic who is supposed to be one of the best at unusual endo. He went over all my records and tests and said he didn't believe it was endo. Super! Again no answers!

Now, through all of this the last couple of years my primary doc had me on vicodain 7.5? (is that right?)Well it would take an astronomical amount to control my pain during those times of the month and I started experiencing terrible withdrawal on a regular basis. I finally gave my pills to my mom so she could help me control them and help wean me down to just a maintenance amount after the week of my period, only to of course go right back up 1 to 2 weeks later. This went on and on. I was always honest with my doc about it and I started suffering a lot of anxiety. i felt like a drug addict and it really bothered me a lot. Finally when we came back from the Cleveland appt. my doc said he wanted to start focusing on my quality of life instead of finding answers. I expressed my anxiety once again over the pain pills and he asked me if i wanted to go through detox! I just wanted to cry. Part of me actually did want to go through detox but i knew i couldn't risk getting labeled an addict because I have legimate pain problems. So i went home from that appt. and flushed all of my pain meds down the toilet. I went through withdrawal, which was horrid, all by myself and don't ever want to do it again. I decided to take charge of my life and suck it up through the pain. Well that lasted until my next kidney episode. I ended up screaming and crying in the floor. I had forgotten how bad it could really get with no pain meds. So my mom accompanied me to the doc's the next morning where i pleaded with him to do something. So he gave me the 25mcg. duragesic pain patch to try. I think it is super and i question why it wasn't given to me a long time ago. I do still have kidney pain but it is livable for me. i get more relief from that patch than i ever got from any amount of vicodain.

I have determined on my own to only wear it when I absolutely need it. Last month i even sucked it up and got through ovulation without it. I find that i do have to wear it the week prior to and during my period, usually around 12 days. Then i take it off and i don't experience any withdrawal. I don't want to become dependent on it or have my tolerance increase to it. Now here is where some of my questions and problems come in.

A couple of years ago i was diagnosed by a rheumatologist with psoriatic arthritis. I had experienced a lot of problems with stiffness since I was around 21 that I knew were not normal. Every once in awhile my joints would hurt but not often. When the rheumatologist diagnosed this I was very much involved in finding answers to the kidney pain, and I actually thought he was only patronizing me and I didn't believe that psoriatic arthritis was even real, so i just blew it off. (Just so you understand I've went so long with this kidney thing undiagnosed that i start feeling like all of the docs think everything is in my head, thus that is where me thinking he was patronizing me comes in) I also have had psoriasis since I was born. Well I guess the last couple of years the vicodain was masking a lot of my symptoms. I also have TMJ and sleep with a night guard, and i knew the vicodain was masking that pain, which personally i viewed as a good thing! lol!

After I flushed my pain pills i was shocked to discover that i have horrible joint pain! My hands and thumbs, as well as my knees just kill me. Also my lower back into my butt was killing me too. I am now on 2 different anti-imflammatories. 2 7.5mg Mobick in the mornings, and 1500mg. of Relafin late afternoon. Even with that I am still in a lot of pain to the point at times where I can barely get back up our basement stairs after putting a load of laundry in. And 3 times last week I could not get the milk or juice open for my kids' breakfast. It makes me really angry. I also clean houses on Thursdays which is becoming a great struggle for me. My dad has given me darvocet a couple of times to get me out of pain. I found that 1 1/2 darvocet really made all of the difference for me.

I am scheduled to see a rheumatolgist, who they had to call back from retirement, on Oct. 10th. I'm a little worried about that because I don't know how up on things I should expect him to be. Also a different doc, diagnosed me with sacroiliitis. She didn't explain anything to me about it but said I needed to have these injections done in my hip joints under xray. Well, i just assumed that sacroiliitis was a temporary thing and that the injections fixed it. I don't know why i didn't question her about it! I opted to not have the injections and see if the problem resolved on it's own which it definitely has not! So in the course of getting the injections rescheduled a couple of weeks ago over the phone somehow the nurse mentions that I may need these injections 3 or 4 times a year! I was stunned. She also said that some people have really great relief from the injections while others have none. I just had no idea this was something I was going to keep having!

Here's where i am right now. I asked my doc about giving me darvocet along with my anti-immflammatories and he refused. He says it is as strong as vicodain, which through any research i've ever done, I don't agree with. It really infuriates me because I've obviously been labled a person with a pill problem after being honest about the way i felt physically and emotionally throughout the whole vicodain trainride. I have been totally honest with him where i stand on the patch. I even take them with me to my appt. so that he can see for himself how many i have left. I haven't told them this but i do feel different on the patch, just like i did on the pills. It makes me feel, again, like i'm doing something wrong. I've also told them that the patch actually does not do anything for my joint pain. I don't understand that either! I mean how can the patch pick and choose which pain it is going to help?? That doesn't make sense to me. I told them I wasn't going to wear it because it didn't help my joint pain anyway and that isn't why it is prescribed to me in the first place! The nurse expressed disbelief that the patch wasn't helping my joint pain at all! I would think if I was really just out for some pain pills i would probably try to get something a little more potent than darvocet! My doc explained to me that there is some pain we just have to learn to live with. Well, excuse me but I think it's not asking too much to be able to open the dang milk for my kids, and not be distracted all day long with the pain I'm in. I've started having mild panic attacks thinking that I am going to have to live like this forever, which I don't dare tell me doc.
At my last appt. my doc was held up at the ER and his PA prescribed my darvocet to try and make it until i see the rheumotoligist. I was also honest with him that my doc wasn't going to give me any and I didn't want it to appear that i had went behind his back to get them. He said it wasn't a problem and that he would hell him. Well, he only gave me 30 to last over a month! lol! So i've really been nursing them as i am sure that they won't give me another script. My injections are this Friday morning for the sacroiliitis so i am not allowed to have any anti-immflammatories for 3 days prior to. Last night was my last dose, and yes a am worried! I expect i will end up relying on the darvocet more than i want to. Yesterday i decided to order darvocet from an online pharmacy. I guess in a way i've developed an attitude! lol! I just don't see anything wrong with me not being in pain, and who are they to make my have to live this way? By the way, the clinic we go to through our lovely HMO has no pain management program.

So here are the three areas I am seeking help from today. I would like some info on psoriatic arthritis. I don't understand if it is really psoriatic arthritis can you have joint pain, in joints where you don't even have psoriasis?? Because I don't even have psoriasis on my hands, just a little on one thumb. Mostly i've always had it on my elbows (which don't hurt), my knees (which do hurt), my toes and ankles. Also, the sun helps me alot so my psoriasis on my knees has been cleared up all summer and I'm wondering if the skin being cleared of the condition makes the arthritis go away?? I have a feeling the answer is no, because my knees still really hurt, but no one has addressed these questions for me yet.

I would also like someone to explain the sacroiliitis to me. I've tried to research it on the net and even thought i consider myself to be an intelligent person, the sites I've been looking at are a bit too technical for me to understand what i really have and what the prognosis really is. I was surprised to find last night that there is a definite coordination between sacroiliitis and psoriatic arthritis.

And lastly, and i'm sure you can't answer this on the boards, but i could not figure out how to order the darvocet online. I went to lots of different sites too. It seems that vicodain is very prevalent but i absolutely do not want any of that. I did find some darvocet but i don't want a paramedical company to come to my house! I also guess I could get some pages of my medical records but it seems so overwhelming to me. They are like 10 inches thick as i'm sure a lot of you can relate to and i wouldn't know what to pull out or if you look through them yourself and copy what you want. Also if you have current medical records why wouldn't an online doc question why you aren't getting pain meds from your doc if you're obviously currently going? Many of the sites said you had to have proof of a current physical. Yeah..I'm going to call my doc up and request a phyisical for what reason?? lol! I just thought it would be easier after reading so many posts for the last couple of months and I would like someone to guide me through it. As i said i am sure that can't be posted on here and i am scared to post my email address as that seems risky too. So i thought if someone really trusted on here could let me know what to do, as in, do i post my email address, to get the info or what.

Lastly i would like to really thank you for making it through this huge boring document. After reading posts on the various boards for a couple of months i find it very depressing that so many of you suffer such unbelievable pain on a daily basis. I had no idea that so many people suffered so much and it makes me feel really bad and helpless for you. I know my pain is small potatoes compared to the majority here and I wish for all of you that there would be some serious changes and research done in this country so that you will be given the help that you really need.

[scottieK]

Hi there, I haven't posted for a very long time because I get very frustrated because I have long term chronic pain from a fall and a car accident which resulted in three fusions and arthritis all thru my body. You are right when you say that there are people here with worse problems but sweetheart we are all in the same boat. All our pain affects our lives seriously and we all need to speak up and try to control our situations. Pain is very destructive and it hits the people who wind up with health practitioners like you describe. I aplogise if anyone out there thinks I am making too broad a statement here but I feel that in their ivory towers they do not know how much hell we face every day.

To tell you that one medication is too strong is wrong-some medications do not work in the same way for one person as in the other. It has been shown that a person having a nerve block in their spine can have relief from plain water injections and/or saline, and/or procaine. (see whiplash.com). The doctors who did the study realised that the neurotransmitters that are involved react to such small concentration changes that they could not rely on their test results. -this tells me alot.
I guess the real message here is that doctors have to guide you and you have to guide them. To be "honest" with them and show how "good" you are suffering through and battleing not taking your medication as prescribed so you do not appear an addict ONLY puts you in distress. You, on a bad day will have to take twice as much pain medication to get to the point where you will be able to take care of those children of yours.
Nobody is there to help you move thru those bad days- they are usually just happy to see that you are able. I have found in my family they just hope there are days I will not complain or cry and front of them. You DO have to take responcibilty to be aware of the drugs you take and what is good for you but for God Sake you do NOT have to have the pain you describe- it is not humane and I will tell you that if your doctor does not listen and give you proper guidence then he should not have his job. I have been disabled for just about 20 years now my bad chronic pain has been in the last 7. In the large clinic I have been going to the doctors have done a complete turn around as far as their opinions on pain relief. All of this has to do with a wonderful group of people in the chronic pain association. You have one in the states and we have one in australia. Darling, what you have described is so familiar. Just remember that most people can not fathom the day to day trials you go thru.- I hope they never do. Some people are selfish but most do not want to know. YOUR doctor needs to know how bad it is (so tell him)and I would like you to NEVER apologise for wanting him to do his job. We have Medicare here to help pay for care- you obviously do not. You would take him to court if he sold you the wrong information-yes? well get him to supply real help. I did find out something else after all my troubles and that is I am not the only one with my symptoms- your doctor has usually seen more than one like you so if he tries to make you out to be unique and he has no ideaabout your situation- he is right about one thing and that is he has no idea and he should get you to someone else.
Please go to the chronic pain web site and see if you can find some contacts in your area. good luck and I hope to hear from you- love Kate

[Dawnrise]

I'm only able to address the psoriasis/psoriatic arthritis issue, as I have both. And have had it for approx. 20 years.

Yes, you can have joint pain in any joint, even if there isn't psoriasis appearing on that particular joint. I have PA in my fingers, wrists, elbows, knees, ankles, feet and toes. But did not have psor. on my fingers, wrists, ankles, feet and toes. And I have heard that if one joint is affected on one side it is likely to appear in the same place on the other side. True, in my case.

My dermatologist always suggested going in the sun to help my psor. It never seemed to work but I also couldn't stand to lay out in the sun when its humid so I decided to go to a tanning bed. Which has cleared it up completely. And just because your psor. is cleared up doesn't mean your arthritis will too. Mine hasn't.

I feel bad for what you're going through. I hope you find a sympathetic doctor soon who is willing to help you. I have been lucky in the respect. I have a rheumy in Columbus, OH which works with my family doctor in between visits.


[This message has been edited by Dawnrise (edited 10-21-2003).]

[This message has been edited by Dawnrise (edited 10-22-2003).]

[Romi Wallis]

Hi there - your post was interesting to read so don't apololgise for it! I copied the section here which really gripped me: So here are the three areas I am seeking help from today. I would like some info on psoriatic arthritis. I don't understand if it is really psoriatic arthritis can you have joint pain, in joints where you don't even have psoriasis?? Because I don't even have psoriasis on my hands, just a little on one thumb. Mostly i've always had it on my elbows (which don't hurt), my knees (which do hurt), my toes and ankles. Also, the sun helps me alot so my psoriasis on my knees has been cleared up all summer and I'm wondering if the skin being cleared of the condition makes the arthritis go away?? I have a feeling the answer is no, because my knees still really hurt, but no one has addressed these questions for me yet.

I would also like someone to explain the sacroiliitis to me. I've tried to research it on the net and even thought i consider myself to be an intelligent person, the sites I've been looking at are a bit too technical for me to understand what i really have and what the prognosis really is. I was surprised to find last night that there is a definite coordination between sacroiliitis and psoriatic arthritis.
I have a very very long story to tell as well (but no energy right now). What i can say is I have also been diagnosed with all three of the above and feel at times as if the meds and the pain and discomfort is going to drive me MAD! Last night i decided to cut out all the meds. They are not helping at all but are SO toxic. I really don't have any answers, I just know this is a horrible illness/malady/disease whatever!! My legs ache so do my hips at times (mostly) my knees, my toes and feet awww... it's getting me down. I can barely walk and have to hold down a full time job. Gotta rush but will check back soon for response or perhaps a chat which help relax us!

[kootie]

Sorry you are in so much pain and gettin no quality results from yur doctor......but please be careful with the mail order online meds sites ! I heard they may start busting the people ordering the meds since they are illegal without a prescription. Some post that they will send meds out descretely but if they get confiscated from time to time which would mean you would get nothing but still end up paying. Just be careful.......! My doc started me on oxycontin but then within a month got a notice sent out to 'all' chronic pain patients they could no longer treat them cuz of malpractice insurence. It actually worked for me even tho luckily I never took it daily.......good thing too cuz what would I of done if I had been takeing it for a long time every day ! All they could do is offer pain management offices and noticed several were med free clinics or rehabs ! So.....just thought I'd add that to the list of doctor horror stories !!! My doctor can prescribe a few other pain meds I am happy with for now but still am afraid to take anything daily in case "they" change there mind ! Isn't that aweful......so I take the bad days with the good and have a few relief days a week. Best I can do. Pam