Sticky Blood-Hughes Syndrome Support

Limited mobility/tendon issues. . . am I alone?

I have had horrible pain between my shoulders for months now. My rheumy gave me an ultrasound and determined that while I had some deterioration/arthritis, it was most likely a tendon problem. The plaquenil helped me not have that nagging horrible pain daily, but I was taken off it due to anemia.

I have since injured my knee and have had an orthopedic surgeon tell me it's tendonitis, while my physical therapist thinks it's a torn meniscus. Honestly, the tear seems more likely based on what I've read, but the surgeon (who gave me a 1 minute exam) is convinced it's tendonitis. I asked him how long they typically take to heal, and he told me 3 weeks. I have been having pain/swelling for 2 months now despite taking high doses of prednisone!

I made an appointment with my GP for a second opinion. My other knee is having problems too (the surgeon calls it "irregularity") and I'm terrified of losing my mobility. My muscles burn constantly, like I'm overexerting them, and I have terrible fatigue.

I don't understand why the doctors/health professionals don't work TOGETHER! Each person thinks they know best, yet I'm worse off now than I have been in a long while. I take vitamin d3 and calcium daily, but haven't noticed any improvement since starting them months ago.

Thanks for listening to my vent :(

14 Replies

i recommend getting another orthopedic analysis -- from what you've described it DOES sound like a torn meniscus -- i should know -- that's what happened to me and i had surgery in april of 2009. and it takes a LOT longer for the torn meniscus to heal -- get a different doctor.

initially i was told that i had a knee strain -- it wasn't until i got to PT that the PT told me it was actually a torn meniscus.

and yes, once the first knee develops a problem -- so does the other one.

good luck to you,

how much vitamin d 3 are you taking each day? please consider at least 5000 a day.


Why do you recommend taking 5000 of Vit D per day?. I take 2000 per day. Maybe I am not taking enough.



You really shouldn't be recommending medicine doses as that is specific to each patient and too much is just as bad as too little!

I know you're just trying to be helpful here but we should leave this to the doctors.

My D was way too low this past winter and I'm now on Mega doses. I immediately realized a huge difference in symptoms reduction but still have daily pain and stiffness.

Not sure if you can request a MRI but that would show any damage within the knee.

Is the other knee painful now because you're favoring it? Torn meniscus isn't going to migrate.

Also have you been evaluated for the different types of arthritis?

I do hope you're feeling better soon.


I was originally taking the prescription mega doses of d2, but I cannot tolerate them. They give me urinary symptoms and horrible nausea, so my doctor told me to switch to 4,000 iu of d3 daily. I have been taking this much for nearly a year, and while my levels have gone from 19 to 33, I feel absolutely no difference, and even on the mega doses I only reached a 29. I know I have malabsorption issues (not just d) but the doctors don't seem to be concerned.

Yes, my other knee is going out because I was/am in this horrible brace that forces me to put all the pressure on my "good" knee. My xrays didn't show any arthritis, and my physical therapist said it almost seems like the swelling is coming from inside the joint.

Thanks for the well wishes.


again -- please consider reading dr joseph mercola's web site and his article on D3 -- -NOT d2.

to bump the D3 level up -please consider taking it twice a day instead of once -- that should raise the level.

one of my sister-in-laws has a D3 deficiency and she was given an initial injection of 50,000 IU and within one day felt a tremendous uplift.

the knee brace that i am in for my meniscus is made by a company called ossur -- they have a really nice web site --

that is their web site -- mine is this one --

it's really nice -- but because my knee collapsed again on me in 2011 --which resulted in a broken right arm, dislocated jar, my glasses got ruined, and something ripped in my left knee -- i now need support for that knee.


Do you also have lupus??

What kind of urinary symptoms?? I've been having issues lately and wonder if that's what it is....


I do believe my physical therapist over the surgeon as her exams were much more thorough, and my symptoms more directly align with the torn meniscus. I will definitely be getting a new doctor.

I really don't want surgery, but most of the literature I've


sorry, I hit reply too soon. . .

most of the literature I've read points to surgery as a fix. I do feel somewhat better with the PT though, so I'm glad I have that.


many people do not have the knee surgery but opt instead for knee support -- like braces.

if i had had a choice i would have opted JUST for the knee support. i didn't start falling down upwards of 20 times a day until AFTER i had the knee surgery - and i started falling down literally the day after surgery. here it is 4 years later, and i still have the knee problems. BUT, with my ossur knee brace, i can feel the knee cap shifting so when that happens, i just stop for a few moments, and then i don't fall down as often.


from what i've read on other web sites and message boards -- if one is deficient in vitamin d3 -- then the minimum dosage each day should be 5000 iu a day,

if you go to dr joseph mercola's site -- he has an article about how to calculate how much vitamin d3 to take each day -- it's based on a person's weight. i can't remember the exact numbers but i do know that a 200 lb person should be taking 10,000 IU of vitamin d3 each day -- hope that helps


As far as the pain between your shoulder blades is concerned it sounds very much like trigger points. These can be worked on by a good Myofascial therapist or a physio who is familiar with working on these issues and not flaring an already inflamed area. You can also help yourself by putting a tennis ball in a sock. Hold the end of the sock and stand up against a wall. Allow the ball to fall where the pain is and then press up against the wall so that the tennis ball is rolling over the tender point. You may well feel a little lump or even hear a crunch as it goes over it. If you can do this a few times a day and then ice it and take some pain killers, preferably an anti-inflammatory if your other medications allow it you should see some improvement.

As for your knees, I would recommend a second opinion. In order to really know what is going on you need an MRI. How a Orthopaedic Surgeon can say its tendonitis without doing one seems odd to me. Sometimes a Doctor will say such things when they dont want someone as a patient because they know it will send you elsewhere. They just want straight forward wham bam in and out surgeries and if they get somebody with a disease such as ours which is more difficult to manage they just dont want to know. So in my opinion take this as a lucky escape and find another one who you can trust and who will give you and honest assessment.

Good Luck.


My sister works in a hospital, and she basically told me the same thing you just did. She said that orthopedic surgeons like quick fix surgeries and they don't want any other type of patient. How frustrating!

My GP is very wonderful, and she wanted me to get an MRI a month ago. I'm sure she will be none too pleased when I tell her about my latest appointment. I hope she can find me a better doctor.


are you with an HMO? if so, there should be a list of doctors at the hospital or medical clinic that you go to.

here in WA state, although we have blue cross/blue shield -- most people go to either the everett clinic doctors or the providence hospital doctors. if they want specialty care, then they usually go to one of the seattle hospitals -- like university of washington, or swedish medical.


i agree with APsnotfab about the doctor comments


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