Name This Condition Please
Symptom: Entire hip area front to back right side from outer top of Iliac Crest all the way down to hip socket outside to entire upper thigh and groin up to mid pelvis. Imagine a tight tourniquet there. Not excruciating pain so much as intense squeezing tightness, mild swelling, nothing truly frightening. Difficult to move, feels like it weighs 500 pounds on a 115 pound woman, HEAVY. Comes on with gentle stretching and walking. Mild swelling and outer tendon pain below knee joining the fray⦠read more
....slow today. Hopefully, my reply will help. Short answer, skip to last suggestion. Sorry about the Rheumatologist ignoring the concerned area.
[LONG ANSWER FOR THOSE WITHOUT SUPPORTIVE MEDICAL STAFF]
Orthopedic surgeons are referrals for surgery. PT will provide function support. Rheumatologist will provide disease support. And so on. Compartmentalized medical care sucks for this need. A team approach is needed, but, this is reserved for the obscenely rich, famous, and wealthy officials at Mercy Hospital, MN. So, the following is my suggestion, for what it's worth.
If you have a fall, go to urgent care or the ER. They will image areas that you report [this is key to include the SI Joint by pointing to it and each area] as very painful. It took me many years to learn one more lesson: if a doctor touches an area that hurts, verbally let her/him know. Murmuring to screaming is the range, use one that matches your pain level. They are expecting this result from touching your painful area. Stocism and politeness is inappropriate at this point in the clinic room, otherwise, be polite, appreciative, and open to their help. If asked about other conditions, briefly state Ankylosing Spondylitis and your worried that it may be responsible for your fall, and you want to prevent future falls and more severe injuries. That's it. They most likely will examine you thoroughly for any damage and extent of diseased tissue. Their report will go to your primary care physician and notification sent to your Rheumatologist.
Without a fall, and never lie or fake or even take a fall, diagnosis is harder. Unfortunately, you will have one in the future with this disease. So, have this backup plan in place.
If medical staff is resistant, you can be more formal through signiture required, certified mail envelope that you send with a letter briefly stating the issue and concern(s). These letters require action and have legal rights to appropriate and timely care for you.
[SHORT ANSWER FOLLOWS]
Pitac, your hip descriptions are spot on target with AS. It still might be something else. But, I would wager that the treatment will be very similar. Also, trust your PT exercises and mild stretches that you already know so well. Blood flow through the painful tissues shorten recovery time. Yup, you already know this, too. ;-) I'm just encouraging you and others who read this.
If you have a trusted medical staff person, call him/her and ask for guidance. Just like you have arranged to do at your next appointment.
The current spine doctor doing the cervical area treatment may also informally suggest a path to address this issue. Just ask.
My headache is gaining ground, the bone on bone spine inflammation has caught up. so I must stop. If I didn't answer your question, I apologize. I was thinking how to help others, too.
I deeply appreciate your journey. You are awesome.
Pitac, I'm so sorry you're dealing with this! AS manifests in so many different, and unexpected, ways!
Quite honestly, though, this sounds like tendinopathy. It is linked to hormonal changes, as well as other things. Basically, the tendons don't support you the way they're supposed to. This would be an Orthopedic physician's line of work.
Best of luck to you!
Jess π
...Problem solved. 4 years ago Armageddon came, you've read it or can, anyway. PT, jetted tub, massage chair, heat, cold, all of it you all know. Been good. But hip bursitis joined the party. The walking with hiking poles aggravates all of it, feels like hard labor at the end of the walk, less and less capable. Last winter I only got half as far by summer too hot as the prior year. Fine.ππ I went back to my shoulder Ortho beginning of last year, described what I wrote here, and he thought maybe hip necrosis π±π. MRI, nope, torn labrum over 2 quadrants and 1+cm chondroid lesion in femur marrow. Whew! Only arthroscopic will help. Hmm. We'll see about that, you know me..πWhy get arthro if I'll likely need THR eventually anyway? Deal with it.
The spine MRI I had last Dec showed 3 lumbar bulging disc dessication, intervertebral cyst between L3-L4, perineural cyst on left between psoas and sacrum. No SI or IC image. I have a lump like an egg on the exterior of my right IC where it feels like it all originates from and no one has addressed it even though i look them all dead in the eye, lift my skirt or drop my pants and put their hand and eyeballs on it! Trust me, no piety going on with this Pitac, you do know that means "Pain In The Ass Cat" right?!π
But now I can't even get through my gentle stretching and light joint swinging/loosening without that tourniquet tightening and going down to my knee. Aaargh! I've had enough doctoring this year.π Besides, I'm playing the Federal insurance maneuvering to get another stem cell treatment in Chicago later this year/early next year for my SIs, etc. I guess I'll try to get to another ortho group to get a good updated MRI and diagnoses on the SIs and all to decide where best to put the next round of stem cells. Heavybsigh. The Andrew's Institute is a 90min drive from me through tourist death trap gauntlet road. πAaargh.
Thanks for your input Gang. I suppose I'm just trying to wrap my brain around another round of aggravating most likely not to help anyway crapola. Maybe I shouldn't have been dancing around in my gym the other day while doing PT.π²π€ͺππ
Don't scold! You don't know what you can't do til you try and if it kills me in the process I'll be happy to die trying!π€πͺπ
Sounds to me like a case of stage 3 Myhiphurtsosis @A MySpondylitisTeam Member
Brian, such a beautiful post. We were all meant to be together on this site and we share intimate feelings and issues. Why we were brought together Iβm not sure but I also love each and every one of you. You give me hope, and guidance and I am so appreciative of the time you each takes to help us all. β€οΈ
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