It's 1am

crazymama30

Active Member
Well he went to pain doctor again, got another fentanyl and toradol shot, fentanyl patches, and they took samples of the bone growth and the excess fluid that is building up around the joints. I have to call the pain doctor tommorrow to find out if what husband is telling me is correct, as when he gets like this he gets his facts messed up and is prone to exaggerating.

I am numb. I am tired of all this ****
 

gcvmom

Here we go again!
How can he NOT have something like RA if there's fluid around the joints??? I don't get it.

I'm sorry CM. I'd be beyond tired of all the ****, too.
 

gcvmom

Here we go again!
What if they were to treat him AS IF he had an autoimmune joint disease and start him on one of the immunespressants to see if it helps? At this point, what has he got to lose?
 

DammitJanet

Well-Known Member
I totally agree with you gcv. They keep telling me that I dont have RA because I am too old for it to start. Ummm....I began with arthritis problems younger but I just wasnt seeing THESE docs then...lol. I lived in another county or another state. Also for so long people just told me I was imagining things...if I just dropped weight it would all be better. I actually had a doctor tell me I had spoon in mouth disease. If I just stopped eating for a year, I would feel just dandy. At that point she was about a six 4 and I weighed about 230. I left her office in tears and didnt attempt to get help for anything for years after that. Why would I?

Even now my RA factors dont show rheumatoid antibodies. There is such a thing as serum negative RA which some doctors have thrown out there as a speculative diagnosis for me. It is getting curiouser and curiouser now because my hands are becoming more affected which shouldnt be happening. I am degenerating before their eyes like something is just eating away at the bones and joints. I do think there is some weird disease that they havent found that isnt following the rules they have set out. Its not OA and its not RA, but its hurting people like me and your hubby. I have no idea what we did to have in common to make this happen. Maybe we should type stuff out and we could find some common link!
 

crazymama30

Active Member
I am not against starting an immunosuppressant, but husband has not seen a rheumatologist for over 5yrs, and has not had the fluid around the joint thing before. He sees a new rheumy on 11/29, and I will make sure I go to that appointment. I have called pain doctor to make sure that I am getting the whole story and not only part of the story. husband is good at not hearing everything. And yes, he did sign a release so pain doctor can talk to me.
 

DammitJanet

Well-Known Member
Good that he can see a new rheumy. I havent seen one either in a long time. I dont think it would do me much good to tell the truth. Just one more hand in the pot.
 

gcvmom

Here we go again!
And there are other autoimmune joint diseases besides RA...

I'll keep my fingers crossed that this new doctor is a good listener and a creative, outside-the-box diagnostician.
 

susiestar

Roll With It
RA and OA are NOT NOT NOT the only kinds of arthritis. Arthritis can start at ANY age from before birth to just before you die. Janet, what they are telling you is just plain stupid. Not ridiculous, stupid.

They think I have some atypical form of psoriatic arthritis and/or reiter's (another type of arthritis) or some other kind of arthritic disease. There are a LOT of new treatments for arthritis and immune diseases. Some of the biologic medicines are MIRACLES for the right patients. I have tried 2 and not had much luck with them, but I know people who were given their lives back by them.

Finding the right medication for arthritis is as much an art as finding the right psychiatric medication combo is for a child. But they can work miracles if you find the right medications.

It is very very common for patients to NOT absorb/understand/remember what they hear in doctor's offices. Being in pain makes this much much worse, so it is no wonder that your husband comes home with mixed up info, crazymama. My pain doctor encourages people to take notes and if writing is a problem he has been known to either write it himself or get a nurse to come take notes for a patient. It is a very good idea to double check what your husband tells you about the appts. heck, my husband has few medical problems and I still have to go with him if I want a problem taken care of. he just won't remember to ask, even if I write it down. Or he won't remember what they say. he had a mole taken off recently that was really BAD. It would not have been seen if I hadn't gone and asked. I even circled it with a sharpie before the appointment so that he couldn't say I asked about the wrong one (he is a moley kind of guy, lol). It was cancerous but we got it before it spread or got too deep. It was just luck. But even with no substantial problems he gets what the doctor said all mixed up.

Is there any way your husband could take a recorder to his doctor appts so you could hear what they say during the entire thing with-o having to call later? I have an aunt who started this with one of her ex's because she couldn't always go and the doctor got impatient when he had to take time out the day after each appointment to speak to her. Not saying that your husband's doctor minds, but it might help keep things really clear if you had the recording.

I hope he gets some REAL help and they can fix the problem with his joints quickly.

(((((hugs)))))
 
H

HaoZi

Guest
Has a bone scan or even a check for lupus been done? Susie is right, there are so many other things that express themselves in this way it's not even funny, and it doesn't sound like these docs have bothered looking into other possibilities. My xMIL had her jawbone deteriorating from a bone infection she got during a dental extraction when the bone got nicked, the infection embedded itself so well that antibiotics never could knock it out and it's been slowly dissolving ever since. There are extremely rare forms of cancer that present as bone loss, too. GI diseases that prevent proper absorption of nutrients needed to maintain bone. The list goes on. To say "If it's not this it must be your weight" without even looking for other causes is just.... *beats head on wall*.
 
Last edited:

flutterby

Fly away!
How many steroid injections has he had in the hips? Or anywhere else for that matter. It can cause avascular necrosis, usually in the hips, and it would be excruciating.
 

GoingNorth

Crazy Cat Lady
My husband, before he became ill, lost a hip joint to avascular necrosis. He fell at work and damaged the blood supply to the joint. Over a period of months, the bone died in his hip.

He was in agony. So bad that he woke up in recovery raving about how much better his hip felt. He did well for several years untill the replacement began to wear (they are not made to take the stress of running and other heavy exercise). By that time, revising the replacement was a huge surgery fraught with all sorts of risks due to his bone marrow and blood disease.

He pulled through with the help of many platelet and packed cell transfusions, but the hip was never the same and troubled him to the end of his life.
 

crazymama30

Active Member
I have lost track of all the steroid injections he has had, and will google the symptoms but I really don't think that is it. He had a flare at about this time last year, but this one is much worse. Thank you all for your concerns and ideas.
 
Top