Am at the point where I am barely getting through the day, and am seeking out ways to find the right help, along with what I can do for myself. What has helped those of you who have advanced arthritic damage, and spine issues?
Husband and I talked about doing some occupational therapy, and me changing primary care to a doctor who does internal medicine and rheumatology. Just curious if anything in particular has been a great help to you? Thanks in advance for sharing. HUGS!
The two docs that have helped the most is the orthopedist and the gastroenterologist they always understand what I say.
I have so much trouble with the bronchiectasis (lung) from Sjrogen's that if my the lung doctor doubted me, I would be dead. He really does watch out for me and he also follows up.
The orthopedist always sees me in the Nurses' Clinic so I don't have to pay and to make sure it's not an emergency situation. I have severe osteoporosis from the lupus and the prednisone.
The jury is still out on my new rheumy. She's knowledgeable and she's very nice, but sometimes I can hardly get a word in edge-wise. She was a Professor (MD Phd) at Stanford University medical school before coming to the HMO I belong to. She's observant down to the nano and hits all the bases. But, I'd rather have a conversation with her than a monologue.
Rheumatologists are internists. The rheumy part is their specialty. Good idea! Perhaps he/she can get you set up with the proper referrals. The rheumy is the central doc for me.
Honey I have 8 doctors and I can hardly keep up with them. Yeah I'm pretty sick. They keep me moving.
You have to keep holding on.
P.S. What state do you live in?
Hi! I’d say my Rheumy and my gp are my most effective/important docs. That said, I’ve gotten tons of relief from things like massage and acupuncture! Also, changing my diet to an anti-inflammatory one has been LIFE CHANGING for me as well. Took my pain WAY down and helped my sleep as well, just to name a few benefits. Hope this helps!
Boy this is some good stuff....I have had Lupus and Sjrogen's since (Lupus..1985)..ITP...than Sjogren's since 1999...Inflamation bad stuff...Kari what is your diet for inflamation....please ...I do eat fresh pineapple everyday...excellent for keeping down the inflamtion...what's the rest?
USA girl....do you have alot of asaphgas mucus...I knew that is sick ...but it just the way it is....?
Now to Ohso preplexed...sorry but you learn so much on these websites ..even as long as I have been a Lupie...Yes do get a Dr. who is a rhemutologist, I have had every Dr. you mentioned and stick with the one that knows the most. For my back ...my lower back...I have had ...acupunture (worked ok) took awhile...tracktion..(no way) physical therapy..(some relief) steriod shots..(best relief) chiropractor...learned something I can do at home ....after I went to all these people for so long.....you lay on back, put legs straight then put left leg (bend knee) and put on right leg thigh like doing a indian squat but lying down. Raise right leg with left leg on it and put your hands behind right leg and lift both legs as far up to your chin as you can....then do the same for the right leg.....man you will feel it pull if it is really out ....but boy it feels great ...do it three times aday.... I hope I helped a little....by the way my back has 4 herniated discs and dics degeneration...so good luck to you girl...hugs...B
Kari said:
Hi! I'd say my Rheumy and my gp are my most effective/important docs. That said, I've gotten tons of relief from things like massage and acupuncture! Also, changing my diet to an anti-inflammatory one has been LIFE CHANGING for me as well. Took my pain WAY down and helped my sleep as well, just to name a few benefits. Hope this helps!
Hi there, I seem to get the most from my orthopedic surgeon and my neurologist. I have major cervical disk problems along with lumbar and have two knee replacements. I’m still dealing with a tear in my rotor- cuff. You have to go with your heart and find the people you can trust. Good luck to you!
My rheumy,hes the best before i tell him about a new sympmtom he already knows
What it is.West haven ct.
My Rheumy is awesome and is for all intents and purposes my primary contact.
Next my Nephrologist (I introduced them, and now they work together all the time) because he was the one that actually didn't stop looking until he found the lupus...yes, the stupid ANA neg that I am. And just in time.
These docs and the rest Pain Specialists, Cardio, Nuero, etc, send all records to my primary care doc that knows all of them. He is sports medicine doc which has been very good for keeping my nutritional health in check, although I could/should eat more (working on that). It's good to have a main doc so nothing falls through. It was my "stroke" of luck (I know stupid pun) that introduced me to all my docs and they are an awesome team.
Hugs,
DeAnne
Hi Whathappensinvegas, When you say your Nephrologist didn't stop looking for Lupus do you mean you first had a marker of some sort showing you have a kidney issue? Just wondering because I had some blood and urine tested and it is neg. I am also neg ANA but have many symptoms of Lupus :/
Thanks, Alley
whathappensinvegas said:
My Rheumy is awesome and is for all intents and purposes my primary contact.
Next my Nephrologist (I introduced them, and now they work together all the time) because he was the one that actually didn't stop looking until he found the lupus...yes, the stupid ANA neg that I am. And just in time.
These docs and the rest Pain Specialists, Cardio, Nuero, etc, send all records to my primary care doc that knows all of them. He is sports medicine doc which has been very good for keeping my nutritional health in check, although I could/should eat more (working on that). It's good to have a main doc so nothing falls through. It was my "stroke" of luck (I know stupid pun) that introduced me to all my docs and they are an awesome team.
Hugs,
DeAnne
Thanks to everyone for your replies. When I read between the lines, it seems everyone agrees 1 sharp doctor who acts as team head, and stays on top of everything is very helpful. Also, any doctor or health care pro who is willing to put the time, thought, and effort into deciphering what your symptoms add up and how to truly help you towards wellness is a great help.
I didn't get to make any phone calls today, but it's written as a reminder where I can't mmiss it tomorrow. This was a chaotic day. finally broke down and turned my phone off. As much as I want the family to stay in touch and be close, they all need to realize I'm not available 24/7 and have needs of my own. I don't consider personal hygiene or rest as optional! The last 2 days I have been going nonstop since waking up. I'm doing well to type, and heading to bed, hoping I'll be able to lay down, as it has been very painful. My recent fall made my back and hip pain go into overdrive. Slept last night sitting with a pillow under me, and a couple behind my back for support. See why I need help? Goodnight, and again many thanks.
Hi Alley,
I've always had "slightly" elevated protein levels when checked over the last 10 yrs or so. Just during routine physicals, etc. But, 2 things that stood out for my Nephrologist was not just the elevated protein (by the time I saw him it was 13.94, norm is .01-.95) so as you can see, pretty high. But second was my uncontrollable blood pressure. I was not aware of the significance of the kidneys on BP as well as severe iron and vitamin deficiency. My bp is normalizing, but I had to have surgery on my carotid due to a stroke. It was only after that surgery, when I should have been released, I was kept because of the BP. My doc didn't look at the ANA neg that repeatedly turned up, but did finally get a biopsy several months later. Approximately 1% of lupus patients remain ANA neg and I am one of those lucky few.
My Rheumy thought that once we got the flare a bit under control my ANA would show positive, but it never has. So I guess it's sort of a backwards type of thing. ANA neg during a flare and ANA pos when not in a flare...again for 99% of people.
Hope that was helpful.
Alley said:
Hi Whathappensinvegas, When you say your Nephrologist didn't stop looking for Lupus do you mean you first had a marker of some sort showing you have a kidney issue? Just wondering because I had some blood and urine tested and it is neg. I am also neg ANA but have many symptoms of Lupus :/
Thanks, Alley
whathappensinvegas said:My Rheumy is awesome and is for all intents and purposes my primary contact.
Next my Nephrologist (I introduced them, and now they work together all the time) because he was the one that actually didn't stop looking until he found the lupus...yes, the stupid ANA neg that I am. And just in time.
These docs and the rest Pain Specialists, Cardio, Nuero, etc, send all records to my primary care doc that knows all of them. He is sports medicine doc which has been very good for keeping my nutritional health in check, although I could/should eat more (working on that). It's good to have a main doc so nothing falls through. It was my "stroke" of luck (I know stupid pun) that introduced me to all my docs and they are an awesome team.
Hugs,
DeAnne
Oh TY whateverhappensinvegas! My BP is usually to low and I haven't had protein in the urine so I'm assuming my kidneys are fine. I hope you find yourself doing better and feeling good these day.
Be well, Alley
whathappensinvegas said:
Hi Alley,
I've always had "slightly" elevated protein levels when checked over the last 10 yrs or so. Just during routine physicals, etc. But, 2 things that stood out for my Nephrologist was not just the elevated protein (by the time I saw him it was 13.94, norm is .01-.95) so as you can see, pretty high. But second was my uncontrollable blood pressure. I was not aware of the significance of the kidneys on BP as well as severe iron and vitamin deficiency. My bp is normalizing, but I had to have surgery on my carotid due to a stroke. It was only after that surgery, when I should have been released, I was kept because of the BP. My doc didn't look at the ANA neg that repeatedly turned up, but did finally get a biopsy several months later. Approximately 1% of lupus patients remain ANA neg and I am one of those lucky few.
My Rheumy thought that once we got the flare a bit under control my ANA would show positive, but it never has. So I guess it's sort of a backwards type of thing. ANA neg during a flare and ANA pos when not in a flare...again for 99% of people.
Hope that was helpful.
Alley said:Hi Whathappensinvegas, When you say your Nephrologist didn't stop looking for Lupus do you mean you first had a marker of some sort showing you have a kidney issue? Just wondering because I had some blood and urine tested and it is neg. I am also neg ANA but have many symptoms of Lupus :/
Thanks, Alley
whathappensinvegas said:My Rheumy is awesome and is for all intents and purposes my primary contact.
Next my Nephrologist (I introduced them, and now they work together all the time) because he was the one that actually didn't stop looking until he found the lupus...yes, the stupid ANA neg that I am. And just in time.
These docs and the rest Pain Specialists, Cardio, Nuero, etc, send all records to my primary care doc that knows all of them. He is sports medicine doc which has been very good for keeping my nutritional health in check, although I could/should eat more (working on that). It's good to have a main doc so nothing falls through. It was my "stroke" of luck (I know stupid pun) that introduced me to all my docs and they are an awesome team.
Hugs,
DeAnne
Alley,
It sounds like your kidneys are doing great. Yeah! My Rheumy actually would have had a hard time diagnosing me with lupus if not for the biopsy. So if some of your other organs are giving you problems, you just might want to check up on it. As she says sometime the "issue is in the tissue". Okay, so doctors aren't all comedians but she tries.
Hugs and Good health,
DeAnne
Alley said:
Oh TY whateverhappensinvegas! My BP is usually to low and I haven't had protein in the urine so I'm assuming my kidneys are fine. I hope you find yourself doing better and feeling good these day.
Be well, Alley
whathappensinvegas said:Hi Alley,
I've always had "slightly" elevated protein levels when checked over the last 10 yrs or so. Just during routine physicals, etc. But, 2 things that stood out for my Nephrologist was not just the elevated protein (by the time I saw him it was 13.94, norm is .01-.95) so as you can see, pretty high. But second was my uncontrollable blood pressure. I was not aware of the significance of the kidneys on BP as well as severe iron and vitamin deficiency. My bp is normalizing, but I had to have surgery on my carotid due to a stroke. It was only after that surgery, when I should have been released, I was kept because of the BP. My doc didn't look at the ANA neg that repeatedly turned up, but did finally get a biopsy several months later. Approximately 1% of lupus patients remain ANA neg and I am one of those lucky few.
My Rheumy thought that once we got the flare a bit under control my ANA would show positive, but it never has. So I guess it's sort of a backwards type of thing. ANA neg during a flare and ANA pos when not in a flare...again for 99% of people.
Hope that was helpful.
Alley said:Hi Whathappensinvegas, When you say your Nephrologist didn't stop looking for Lupus do you mean you first had a marker of some sort showing you have a kidney issue? Just wondering because I had some blood and urine tested and it is neg. I am also neg ANA but have many symptoms of Lupus :/
Thanks, Alley
whathappensinvegas said:My Rheumy is awesome and is for all intents and purposes my primary contact.
Next my Nephrologist (I introduced them, and now they work together all the time) because he was the one that actually didn't stop looking until he found the lupus...yes, the stupid ANA neg that I am. And just in time.
These docs and the rest Pain Specialists, Cardio, Nuero, etc, send all records to my primary care doc that knows all of them. He is sports medicine doc which has been very good for keeping my nutritional health in check, although I could/should eat more (working on that). It's good to have a main doc so nothing falls through. It was my "stroke" of luck (I know stupid pun) that introduced me to all my docs and they are an awesome team.
Hugs,
DeAnne