RA Ramblings -- It is not ALL in my head | Arthritis Information
Ok... so I spent 55 mins talking to my mom on the phone tonight. It has been a while since I have even felt like talking on the phone that long because my arm gets stiff & starts to hurt or I can't reach the phone to my head because of swelling in the ole elbows.
Anyways... I was talking to her about RA, fibro and my "odd pains".
I have come to a couple of conclusions for couple of things within the last couple of weeks.
Kweenb posted an article entitled "Think Your in Remission". I read some of it and then after reading a certain part, it struck me that when I thought my J/RA was in remission from ages 11 or 12-17, I actually was not. I came to that conclusion because around the age of 12 is when I "developed" asthma and when I was 17 the asthma went away, but J/RA was showing up in my joints again.
I really do believe that J/RA was attacking my lungs for those 5 years and was still active in my joints, but not to the point of showing in swelling, like I do now. Most of my finger and toe deformities were done while I was in, what I thought, teenage remission.
The reason I say J/RA was attacking my lungs is because the inhaler I was given never really worked for my attacks. And towards the end when J/RA started coming back, I was told I was having "anxiety" attacks. I made a LOT of visits to the ER for those BIG breathing treatments, they worked, but it seemed like I was at the ER for one of those breathing treatments every weekend, before J/RA started coming back in my joints.
It was probably over looked by the Dr's & ER Dr's and claimed as "asthma" because they did not know I had J/RA as to me it was not a problem and it "went away" so I did not tell them of having J/RA.
The other thing I have come to the conculsion about is...
I must have something other than RA & Fibro going on with my body. I say this because I have been having "odd pains". The "odd pains" go away after Remicade infusion, and start back up when the Remicade starts to wear off and like now that I am on high dose of pred I do not have those "odd pains".
The "odd pains" are in my right kidney, always my right kidney and what feels like my intestines. It is not my ovaries, because I know where my left ovary is because of the cyst on it. The pains I say is in my intestines are not near my ovaries.
I just see it as weird that the pains go away when I am on Remicade and high dose of prednisone.
According to my last blood work took in December, I do not have any sign of infection. I did have some things that were high, and one that was like 2 points lower than normal, but RD said it was consistant with having active RA and if it was an infection in my body the CBC would have been elevated also.
I am going to make appointment to see GP when they can fit me in, and then I am going to let her know of my "odd pains". I know I should have told RD about it, and it was really bothering me that day I seen her, but I just did not want to have to stay there any longer, because I had already been there over an hour and my son gets fussy when he has to wait more than an hour to leave. I know he was out in the car with hubby, but the kid gets attitude when he has to be at one place for hours.
So those are my conclusions and they really are not all in my head. My mom has confirmed the asthma part for me because she told me that my asthma went away about the same time J/RA came back. The "odd pains" I just hope are not what I keep arriving to when I do symptom searches, they are both AI diseases.
Yes I know what you mean. Before i started my high dose pred i had a spastic colon and the pred brought that under control right away. When years ago i think of all of the stuff they would give me that never did a thing. So i know it was definately related to my flare. And alright i get an ear infection from time to time. But i know that when i started my flare that it was probably AI inter ear. Because the antibiotics did not make it any better but the high dose pred did. Well there is alot of other reasons i know this but long story. You said the RD thought you had fibro because of the burning feelling between your shoulders. Well whats all the other stuff that i get that dose not have the burning feelling? LOL Joonie i am taking Leviquin an antibiotic but it gives me insomnia like high dose pred. LOL I am just rambling with you. But i here you. I get not all the time but the tube to my kidney it swells the right side. I know why the er didn't want ot give me the medicine. Because i remembered years ago and the doc is now in charge of the er. Well he gave me the medicine and got yelled at by the kidney specialist, but he was not in charge of the er then, he was younger and so was i. Not me i did not yell at him. I mean the medicine made me feel better. But the specialist said he scared up my tubes and gave me medicine i did not need. But see they did not know it was probably RA causing the swelling. All of these strange things i have had come and go over the years that did not respond to treatment. Alright the burning maybe fibro but to me is sign of flaring because i am dropping things. Carpul tunnel yes but have not been doing anything to stir up carpul tunnel. I mean my doc said we figure that AI is responsible for most of your stuff. Well of course or else i am going for the record for multiple problems. Because trust me trying to go from the neuro to the ENT to the enternilist to the allergist, kidney specialist, to the orthos can you see where this could get tiring. If i am not gushing out blood i am not going anytime soon. Well i am going to the ENT. But i simply get over whelmed wondering who i am supposed to see. But thats what my life was like before. And it sort of still is except i am just not as stressed over it as i am seeing that a lot of times the problems clear up on their own after time and just start somewhere else. Like alright i went to check my urine to make sure i did not have an infection but did not get stressed over the swelling in the kidney tube this time i expected it and it went away as it did before. And if i feel like something is bad i ask for them to check my blood and i should do that because i get low potasium and low blood sugar. Yes i agree flaring is sometimes more then just swollen joints. The burning it went away and came back when i went to lay down. Putting pressure on my shoulder blades stirred it up and it is hard to sleep with that pain. Well i new i would have trouble sleeping from the medicine but i was hoping for pain free insomnia that would have been nice. Joonie we are a malady of problems and from time to time is good to get everything checked out. I just don't know how often we should get it checked out. I have not seen internalist for three years. I am supposed to go every three to five years to have the scopes done. Neuro I have not seen for two years and i know i need to see him about the vascular stuff. Well i need to get new doctors anyway because i moved. But it simply can not be done all in one day, so i figure it will take about three years for me to make the rounds and then i am just to tired from thinking about it to make any appiontments. Enough of my rambling. Carry on Joonie. Oh I know what your thinking about. My head goes there also. I think it's not in my head it's in my mri's, and scopes and test. Scary stuff. Well lets pray it is all in our heads. Then all we would need is a shrink and some good antipsychotic meds to make us stop halusinating.
Joonie - I had that same right-side pain on and off for decades. Had an emergency appendex removal surgery, but the pre-op ultra sound found something, which turned out to be a pendulated ovarian cyst, so they also did an explorary with the scope and found a possible inguinal hernia, and a cyst on my left ovary, which he said was benign and too close to the tubes to work on, so he left it.
I was told and got the paperwork at my post-op appointment with the surgeon, and the appendix was normal.
My right side pains were acute pancreatitis attacks, which I have recently been informed are a "canary" for us. This is the trouble with diagnosing pancreatitis attacks: 1) they last about 72 hour so you have to be into your doctor immediately; 2) if the doctor doesn't order up an amalyse or lipase pancreas blood diagnostic tests, it's your stress, depression and hypochondria. You have to final have the right symptoms at the right time with the right doctor to get it diagnosed.
The scary part I discovered is that pancreatic cancer is hereditary and my Mom died of it (and this fact was on every form I filled out) and bingo, I was having pancreatic problems, and finally one doctor tested for it. A blessing. Cathy
Milly - My GP is an internal medicine Dr and so is my RD. I only go to get checked out when I feel sick or something is bothersome like these couple annoying "odd pains". I would not go back to my RD until I ran out of meds, but they keep making appointments for me.
JSNM - I do not think it is my pancrease causing this "odd pain". The pain is about the same as I was having when I had bladder infections caused by IC, except it is a different pain. It is in my kidney, has to be, because it is lower, right, back side just before my ribs end, is where the pain is.
Hopefully, I get around to making all my calls tomorrow to make all 4 appointments I need to get over with already.
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