More pain issues! Updated 7/1

So my back has been not cooperating to say the least, at least I am rid of the catheter but my med use is just way to high despite all the other things I try. I am so thankful for my SCS, it puts alittle dent in things.

I had to call my PM dr because I felt I was going to run out of meds a few days early (first time in 10 years). My script is written PRN every 4 hours, they give me 120 (20 mg oxy) for the month, which doesnt cover every 4 hours if needed that much. She had no problem writing early, since she was aware of my increase in pain and my contact with her ahead of running out. Now I have enough to last the month if I should need to take at max dosage. Of course I dont want to do that, thats not my goal. They dont want to increase my LA just yet as we were hoping that things would stabilize again.

Anyway, I went to see my PCP today and she is addressing some of my concerns. The last two months I have had increased general joint pain; knees, hands, wrist, ankles, everything,lol. In the last few weeks two of my fingers have actually started to noticably twist. Even before I mentioned the joint pain she said she saw the fingers. With my malabsorbtion and arthritis I worry that I am heading towards and RA diagnosis as well. Can RA hit that quick? At this point I cant write more than a sentence without extreem pain and opening jars and containers is near impossible. I can not take anti inflamatories due to my gastric bypass, so thats out of the question. I did order a paraffin bath, hoping it arrives this week so I can try it out. I am an Occupational Therapist, I do know what to do, just wondering why I cant catch a break, I would pay a million dollars if someone could answer that,lol!

She is sending me for a dexa scan and a long list of fasting blood work. Hopefully we can find a way to deal with this new "stuff" quickly. Yesterday was my last day of work till September, yeah! Just didnt want to spend the time not doing what needs to get done in my house. Ok, vent over, thanks for listening!

Love you all,
Shell

Post Edited (Shell74) : 7/2/2013 3:49:38 PM (GMT-6)

Shell,

Very sorry to read your report of all the extra pain. Hope you get a fuller answer for what ails you, so that better treatment/meds can be ordered for you.

david

Awake at 4 AM, not a good night, this is for the birds,lol. My body is just surging with pain, fingers are bent, stuck and burning. I am usually pretty tough in general. I just want to take a two hour bath but we ran out of oil last night and we wont get a delivery till tomorrow sometime. I have been heating up a rice sock in the microwave and moving it around my body. Feels good to just complain, I appologize for that.

Lexie, I did have bloodwork a few years ago to check for the RA Factor and everything was negative. Who knows what it will say now. I need to call my gastric bypass surgeon about the anti inflammatories. Not sure if there are some that arent as bad for us or are they all forbidden, I seem to think its the later.

My hubby just looks at me like, whats wrong now, like I enjoy this. I just wish I could get some sleep.

Hi Shell, sorry to hear things are going so rough for you right now. Hopefully this will all turn around for you & soon. If your PCP is thinking possibly RA, I would ask to be referred to a rheumatologist as this is one of their specialties they treat. A good rheummie has a eye for RA & knows to rely on more than a blood test when making a dx.

Keep us posted on how things go. Take care....SUsie

Shell

Sorry you are suffering like this, you are overdue a break. I hope something comes up on the blood work, that way they at least have something to treat. Shame you can't take anti inflamatories, sounds like that would be just what you need. Does the sunshine help? Sometimes with things like that it does help, I know it does me. Glad you are on holiday but I hope you won't spend the summer like this, you need help fast.

Take care

Jane

i want you to know i understand and others on the forum understand. family same as you describe. "walk a mile in your shoes and then what would they say" might be simple and no big news about something new but i bought good arnica gel in last months and it helps my neuropathy and back muscle post-op scare tissue when it swells all up and then got a infrared massager and the arnica gel then the infrared and it opens lymph and blood vessles and the arnica helps remove sequestered inflammatory markers and sequestered lymph backup. Boswellin cream or tiger balm may be as good or better and i am in process of having a compounded ointment made with possible agents like amitriptyline, doxepin, clonodine, ketoprofen, and a newer idea: using topical morphine, oxycodone, hydromorphone and/or carisoprodol and progesterone. people report great relief. opioids for this must be bioactive in current form ex:morphine not ones that need 2nd pass metabolism to become activated like methadone, hydrocodone or codiene. an idea for what it is worth. good luck with this and know those sleepless nights i am prob up with you....NICK

My PCP called me this morning to tell me that I have a postive RF titer. She wants me to a rheumy ASAP to start treatment. We called around today and the soonest they will take a new patient is mid September. My PCP is going to try to get me an earlier appointment but they are giving her the same dates as of now. I am not sure how I will make it back to school in August if I dont have a significant improvement from how I am today. Just seems to get worse each day.

My friend who is a nursing professor and her husband is an internal med dr, say I should show up to an ER and they will be required to get me in sooner as an emergency. I do see my PM dr on Thursday, hoping they may have a brilliant suggestion,lol.

Sorry, I didnt post here yesterday, I was so tired all day. I was at the school for my daughters physicals and I got call from an office about 70 miles away that they want to see me Tuesday. Between what I was reporting to them, then the pcp confiming what I was saying they feel I need to get in ASAP. I am leary since I cant find anything about the lady/ office anywhere, but at this point I will deal with it. If I need to switch to someone else that is recommended in my area then I can. Several of my OT coworkers have recommended the same person but I just cant see waiting that long to start something.

Lexi, my pcp was all for starting me on some first line RA meds, high dose steroids and anti-inflammatories till I could get in, but because of my bypass those should not be used. My gastric bypass surgeon has said ok to, once in a while in very low dose, but not daily like I would need. I guess since my stomach is so tiny and doesnt empty normally they worry about ulcers forming very quickly. Then that would a whole other ordeal. He has recommended I start with some fish oils since they have anti inflam properties.

I am just trying to keep myself moving. My daughter and her boyfriend found a dog a few weeks ago. It is a white german shepherd that looks pretty young. We figured she got out and someone would be looking for her so we let her stay verses taking her to a shelter to wait. We put ads on 3 facebook rescue lost and found pages, tons of personal FB pages, 3 shelters, several rescues, 2 police stations, 2 state parks, 5 local vet offices, craigslist, borough offices, as well as me knocking on all the doors around the state park she was found at. If someone was looking for her they would need to be pretty dense to have not found her with us, we covered all bases. Anyway, she is a doll and is going to stay with us. I did not need another dog, she makes 5, but I feel she found us for some reason. She walks very good and is pretty well behaved. Normal puppy stuff aside,lol. Since she plays alittle rough with my toy poodle I take her out for walks by herself which makes me get out of the house.

I will see my PM dr tomorrow, not sure if they will want to make any changes considering I have an appt next week, we will see.

Thank you everyone!!

Lexi, when I called my gastric bypass sugeon he said to start with omega 3 fish oils for inflammation. I have taken them in the past in liquid form because I cant for the life of me swallow capsules. I wanted to puke all day long because of the after taste. I love a good piece of salmon, but that was just to far,lol. I am sure there are other possibilities as well, just need to look into it. There was something about blueberry oil I think.

Off to my PM dr appoint then the health food store that is right across the street. Thanks all!

My PM dr is very concerned about me in general and he suggested today that I take some time off from work. I have till mid August when shool starts again to think about it. I knew it was coming but I just wonder if I will qualify for LTD, I know I wont make SSD, but I need something to start with.

Even though we all hate to have another diagnosis, it is good in the fact of having treatments for it. I truly hope the DEXA scan doesn't show much and that the MTX injections help greatly!

I did read your other post on the RA board that you/this Dr. may be thinking that this is what you have had all along and maybe not Fibro/CFS.....That is possible since they really can be similar until RA starts showing up more with any deformities and/or blood test results. But hopefully this treatment will really start making some strides and keep things from getting any worse.

Keep us posted!

Shell, good luck with the injections tomorrow, will say an extra prayer that it goes good and it helps your pain. Sending gentle hugs and positive vibes to you.

I think that is why over on the Fibro board we really do try to encourage people to get blood work and other tests done to see if they do have RA, Lupus, MS....

So, you may have even done that back 10 years ago but then having your Sed rate rise over the years so I do think it's hard for Drs. to diagnose RA until their are those blood and visual markers.

And didn't mean to make you upset:( I was more bringing this up because this can possibly help others to really keep pressing forward with a different Rheumatologist if they feel the Dr. is missing something. Believe me, I understand a bit in the sense of how my whole second fusion surgery and time with that Neurosurgeon was a waste and mistake and have suffered from it...

You just have to move forward as you are doing and pray that this treatment will help things finally! You are a very positive person and know that you will hit this head on!!