Author Topic: osteoarthritis  (Read 305 times)

Judie P

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osteoarthritis
« on: February 06, 2018, 08:17:59 PM »
Just wondering how many of you have osteoarthritis and how it affects you?  Doctor problems as well?
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

Jenny

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Re: osteoarthritis
« Reply #1 on: February 07, 2018, 04:10:33 AM »
Big time! Just had my 2nd shoulder replacement surgery. Have had 4 hand surgeries, severe low back facet arthritis shown on MRI. One knee is bone on bone. Constant pain if I don?t take my Norco.
60 year old female with back, shoulder, neck and knee pain, dry mouth, losing teeth, dry sinuses,Blood test positive for Sjogrens. Secondary Fibromyalgia, Osteoarthritis .
Plaqenil, Vimovo, Norco, misc.vitamins
4 discs in low back fused. Shoulder replaced 2015. Need knee replaced.
4hand surgeries,

cccourt1942

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Re: osteoarthritis
« Reply #2 on: February 07, 2018, 09:56:19 AM »
Judie:  Hand goes up!!  I am 75.  I wasn't dxed w' Sjogren's until age 71.  I start here to say my symptoms (to me) were "aging."  I learned to live with all the SjS stuff  thinking it was the normal aging stuff.  Last year my neurologist sent me to PT for "balance." (old age not SjS-possibly neurological).  Before it was over, I had been referred to an ortho...severe back pain.  Got that dx (old age NOT SjS)>more PT.  Ending THAT round of PT, I felt a hip pain which was excruciating within days.  That 2nd PT was aimed at  strengthening back for spondololithesis (low back). But it was the hip pain which flattened me. 

I'll skip the next 9 months, but on 22 Dec I called the ortho, asked if he'd call in an order for MRIs for BOTH my hips.  He did.  23 Dec, I had BOTH done same day.

Results were osteoarthritis bad enough for hip replacements.  (according to my pain level, the old 1-10 pain range).   Narrowed it down to the hip which had been killing me for  9 months.  Am in process of waiting for an ulcer to close before I can have the replacement.

Now then:  Due to MY age--I KNEW I had osteoarthritis.  My SjS rheumy checks hands, etc for signs of RA...but I've escaped it.  But how did the osteo affect me?  My hips, back (which is really that other dx above), shoulders, and ankles.  My knees have been spared.  I hurt in various arm, wrist, and fingers positions..but they come and go.  Also, alteration of limb usage solves it almost always.  I have bioflex and use it. 

I don't do any of the mildest forms of exercise any longer...nor do I walk for fear of falling now that I know of all above.  I mean "walk for exercise."  I am mobile, I drive, shop, (not like I used to), am able to go out to eat, movies, etc without any probs.  I don't have anyone who goes to dr's appts, etc with me.  I would say overall I am almost completely independent for someone who'll be 76 this year.  Has osteo slowed me down?  Yes.  Because the SjS was dxed so late in life, I really can't recall if all the ortho stuff was affecting my life severely while I couldn't swallow, eat, had the eye probs, discomfort, sleep deprivation, oral discomfort, etc etc.  I can say, I worked part time in my professional field until I was 71.  I must have been mobile.  The constant thirst outweighed any physical limitations.  Oh...I do recall: I have a Pilates Reformer and I was still walking 2 miles on my treadmill each a.m. and doing about 30 minutes on the Pilates 4 or 5 days a week.  So I guess the arthritis wasn't a condition which stopped me in my tracks.  Slowed me down though. The last few years I did contract work, that is just about ALL I would do.  I can remember going home, and virtually passing out every afternoon. 

Here's what you really need to know about your OA:  it shows up on MRIs.  Drs don't like to order them. Too expensive. When I asked for the MRIs, I thought I had to know what, where, and how much whatever it was which  would impact 2018.  ALL my doctors have seen the results.  The two who saw the MRI were surprised.  My rheumatologist was amazed ---that I hadn't complained more.  I told her I had fallen in my early 60s and had bunged my RIGHT hip...and knew I was going to have to adjust to it.  Yesterday, at an ortho check up I was told again my right hip was almost as bad---and couldn't understand why I didn't complain about it.  I suggested the pain was SO bad in the left hip, and I'd learn to cope with it in the right, I guess I didn't feel in anymore.  Then he laid it on me, WHEN the right one hurts, we have the MRI already showing the damage and can go in and do that one as well.  So that's my future.  So here I am with OA in both hips...and one hurts like the dickens, and the other is no more painful than a bump-NOT A BRUISE, just a bump.  A minor irritation. 

Do not let them put off doing an MRI of whichever areas are causing you GREAT discomfort.  I am not saying your degeneration is bad enough to discuss surgery, but I was so thrilled to know I could SEE it.  They can SEE it.  And after I have the surgery, the mottled, arthritic area will have been carved away and out...and the pain (so they tell me) will be gone.  (Then maybe I'll be able to feel the right hip!   :)

Oh...and as to 2017, I did take 3 trips and did LOTS of walking.  Did i have to stop periodically, yes!  I would take half a Tylenol 3 in late afternoon to get thru dinner and a play....and I made all three with all the pain listed above.  I do continue to go!!   :)
Good luck, and hope this info isn't overkill,
ccc

Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

SjoGirl

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Re: osteoarthritis
« Reply #3 on: February 07, 2018, 02:36:07 PM »
Oh I hit the trifecta, Sjogrens, RA (seronegative) and osteo. My osteo is in multiple locations -- up and down my spine, knees, feet, shoulders, neck (along with degenerative disc disease).

Pain is worst this winter that it's been in quite some time, but I'm not on much medication right now. I had to go off of Gabapentin, which I took for nerve pain, but which also took care of arthritis pain.

I am in a flare that has been building for months and led to excruciating pain the past couple of weeks particularly in my shoulders. Night time can be agony, I've been on the couch more than once. I'm currently taking acetaminophen and talking with docs about other options, e.g., going back on Gabapentin or upping Imuran. I do not want to take Medrol again if I can avoid it.

As for doctor problems they want to help, it's just not easy to parse out what is causing what then determining how to treat. I start PT next week for my shoulder and am praying it helps.

Are you experiencing something in particular that leads you to ask? Is there some way we can help?
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Deb 27

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Re: osteoarthritis
« Reply #4 on: February 07, 2018, 06:57:45 PM »
Hi Judie, I was just going to sign on and  vent about my story and it's the same topic!!!!!!!!  I am so    mad today! I have never been told until last week that I had osteoarthritis    but was getting PT on my knee. Well, one pain was getting better and then I got this horrible pain in the back of my knee that was brand new.  The PT lady said it's probably torn meniscus.

 So, I go to the Orthopedic clinic, wait 2.5 hours to see a PA (which should stand for piss ant in his case) who takes x rays and said I have osteoarthritis and  it's not bad enough right now for a replacement. Nice to hear since I never knew I had osteoarthritis...... Had an x ray 8 months ago and they said I had some effusion. He refused me an MRI b/c he said I already had arthritis on x ray and that's all the MRI is going to show. Well, he must think he is talking to an idiot. I am so irritated that I've been dismissed. But, that's what they do to women..........

Here is the worst part, I go back to my patient portal at my rheumatologist's office. It has osteoarthritis          in there and nobody has ever told me that. All they said was I had some effusion in my knee.   They also said I had immunosuppression and they never told me that either.   There is only one rheumy in this town and I only see the ARNP.  I am just put off.......    I also have RA, BTW......

So, after all this, I don't know what is wrong in there!! Torn meniscus, something with the RA.......

Do you have osteoarthritis????   
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  prozac, Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, alpha lipoic acid, multi vitamin.

Carolina

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Re: osteoarthritis
« Reply #5 on: February 08, 2018, 06:19:49 AM »
Ok, Osteoarthritis is the most common 'condition' in the world.  Think about it.  The most common.

So, it stands to reason that those of us with so many uncommon conditions, would also have this, the most common.

That said, I could do an entire number on my OA, which is severe and was one of the first conditions to afflict me (besides immune disorder problems).

First:  Degenerative Joint Disease (Cervical Spine) diagnosed at age 46.  So bad now that I have an area of my neck in which both the nerve and muscle have 'died'.  The pain is unremitting.   I would only contemplate surgery if the pain were to become overwhelming.

Second: Knees and shoulders (both) which should be replaced but will not be.  My orthopedist will not replace my knees due to my profound nerve damage in both legs.  The risk of failure is too high.  I will not choose to replace my shoulders (at age 75) but rather try to manage the pain.  I did have a bone spur removed from one shoulder at age 57.

Third:  Feet, toes almost fused from arthritic changes.

Fourth:  Hands, three surgeries.

Surprisingly, my hips are OK.   ;-)

Elaine

Female-75-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-IVIG-Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-Copper-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

Scottietottie

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Re: osteoarthritis
« Reply #6 on: February 08, 2018, 10:51:04 AM »
Hi  :)

I have OA in my knees, hips and shoulders. I had a partial knee replacement 12 years ago which was thankfully really successful.

I've had shoulder surgery which was less successful - but it wasn't joint replacement. One foot is getting pretty sore now. nothing happening with it medically.

I find my shoulders have given me the most problem. hubby will give me a hug - resulting in me yelping - and picking up grandchildren is awkward. Public transport not great as holding on to poles and things when getting on and off - hurts and driving is now uncomfortable.

Take care - Scottie  :)
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Judie P

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Re: osteoarthritis
« Reply #7 on: February 08, 2018, 05:30:31 PM »
I cannot tell you how much you have all helped.  Right before I was diagnosed with primary sjogrens by a nurse practitioner, I thought I might have MS or Parkinson's.  My legs would get very stiff, I would be off balanced, and I had urinary incontinance.  They thought I was crazy so in order to see a neurologist, my doctor told me I needed to be on prozac.  I promised to take it if I could see a neurologist.  Well, the neurologist told me I did not have Parkinson's or MS, but my potassium was extremely low.  He asked if I would be happy if I was able to have a full body MRI, and I said I had been asking for one for many years.  That is when he changed me from prozac to Paxil and potassium supplements.  Again, I was considered crazy.  Same things continued to happen.  By the way, I was also on hydrochlorothiazide for blood pressure.  When my doctor left the medical center, I got a nurse practitioner.  Resolved that I was crazy, I went to see her for digestive issues.  She listened and sent me for 15 blood tests.  Bingo!  My sjogren's numbers were off the chart.  That was 3 years ago.  She took me off the praxil and put me on Effexor, which has truly helped my fibromyalgia pain.  A couple months in, I was off of diuretic medicine.  The nurse practitioner has since left the medical center and I know have a doctor again.  He is very nice, but...

I started having lower back pains years ago and now it was much worse.  I can only get on side of a block before my legs won't move for me.  My lower back locks up.  He decided I needed chiropractic care by the medical center.  Did not hear from them until 6 months later.  In the meantime, my neck was so bad I landed in emergency.  They took x-rays and told me I had arthritis in my neck.  I went to see doctor and he ordered MRI.  Finally!  After six years I was going to get an MRI!  Neck showed multi layers of osteoarthritis in C5, C6 and C7.  Also had degenerative disc disease and stenosis.  When my doctor saw that, he was amazed I could move my neck!  What did I get?  Naproxen and muscle relaxers in case I had another flare.  Ugh.

Now I go back in for the back pain which has now affected my groin pelvic, pubic and inner thigh areas.  He did an anal exam and pelvic exam and could not figure out what was wrong.  He was more concerned with my blood pressure.  So I figured I was in the same position I was four years ago, but this time I  knew I was going to have problems with the blood pressure medicine.  So I agreed to start on Amlodipine, hoping I would finally be able to get an x-ray or MRI on my back.  From the first night, my legs became stiff, my mouth, nose and eyes were so dry I could not swallow.  Leg muscle cramps and urination had me up all night.  I could not hold my urine and peed on the floor before I could get to the toilet.  Began taking magnesium before sleeping just to calm down the cramps and burning legs.  Ankle and feet began to swell.  I have been in communication with him, but he wants me to stay on this crap until I see him on the 15th.  My husband is outraged!  Have seen the chiropractor twice but she can't work on me because I am so inflammed in the hip areas.  My husband can't work on me because I am too inflammed.

So because of my neck results, I looked up osteoarthritis and realized I had every problem that it causes.  I just know that is my problem.  Hearing your stories has told me I am probably right and that most of you have gone through the same problems.  My plan is to make an appointment with my rheumatologist whom I have not seen in 1.5 years.  Perhaps she will get that MRI done.  I am tired of walking around like I have Parkinson's or MS.  I cannot sit, stand or walk for a long time without having pain.

Thanks again for your responses. 
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

Maria3667

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Re: osteoarthritis
« Reply #8 on: February 09, 2018, 02:16:39 AM »
I was diagnosed with OA when being examined for foot pain.  Standing still for longer than a few seconds was killing me whilst walking was also becoming excruciatingly painful (especially with heels).
Dr. asked me to walk on bare feet on his office floor and then to stand on my toes... I couldn't comply.
X-ray showed OA in the joint of big toe.

I probably have it elsewhere too, like in my often painful hips. However, I do not want further examinations or X-rays, because what can they do besides prove my suspicions?

There is no real cure.

Last year however, I did find supplementing with Green Lip Mussel  extract alleviated the pain. Side effect: weight gain, (thanks very much)...
 
« Last Edit: February 09, 2018, 03:52:04 PM by Maria3667 »
50. Lyme's (1998), Sjogren's (2003), hypothyroidism (2004), osteoarthritis (2016), DES-daughter, GAD. Pilocarpine, natural thyroid hormones, 25mg quetiapine, low dose testosterone, 2.5 mg dhea, supplements. Endometriosis, cherry angiomas, macules. Allergies: nickle, methylisothiazolinone, latex

cccourt1942

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Re: osteoarthritis
« Reply #9 on: February 09, 2018, 11:31:36 AM »
I forgot to mention something about my OA comments.  I have psoriasis.  I do not suffer plaque yet have guttate psoriasis.  After I stopped working (retirement + doing contract work part time for a number of years) my breakouts have almost disappeared. 

My rheumatologist considers me to have OA (i'm old...we all do at my age :) ) AND psoriatic arthritis.  The orthos ignore that dx. I believe it is too esoteric for them.  Something about psoriatic arthritis is there is NO way to accurately dx it.  To diagnose psoriasis they took a plug out of my upper, outer thigh which went in over an inch.  Required stitches!  But...they can't dx the arthritis from said type of specimen.  Some of my peculiarities she believes are because of the mixture.  I have to say, she is guessing...as I would imagine M.D.'s do. 

To me, the people who really are affected by Psor Arthr are those who have arthritis symptoms in earlier ages, like 30s and 40s.  Just tht i'd offer this.
ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

SjoGirl

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Re: osteoarthritis
« Reply #10 on: February 09, 2018, 12:01:11 PM »
Oh Judie what an ordeal you have been through. I can't believe that you were told you had to be on a drug in order to see a neurologist, that's just plain crazy, akin to malpractice, or both.

You have been through the wringer woman, hang in there and keep on advocating for yourself, sometimes that is all we can do.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Deb 27

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Re: osteoarthritis
« Reply #11 on: February 09, 2018, 01:35:24 PM »
Like most of us, you have been through way too much. The sad thing is, we have one very complicated disease and then we get regular aging stuff on top of it and are on lots of meds. It's hard to know what is causing the symptoms. Is it a side effect of a med, or the disease.    While there are good doctors out there, it seems like none of them are as good as the one I had growing up.  He was the best!!

They did check you for a UTI, didn't they, b/c of the back and pelvic pain? 

Take care!
 
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  prozac, Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, alpha lipoic acid, multi vitamin.

Judie P

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Re: osteoarthritis
« Reply #12 on: February 13, 2018, 08:30:00 PM »
Deb 27, Sorry it took so long.  Been working long hours again.  No, they did not check me for UTI.  Just an anal and pelvic exam.  I have been having times without any pain now.  However, I just know it will come back when it flares.  I see my regular doc on Thursday morning to discuss the blood pressure med.
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops