(UPDATE POST #46) What Doctor Do I See About This??

[Hunter's Moon]

Both of my ankles and both of my wrists seem to be weak. 

 

My ankles only tend to bother me if I do not wear the proper footwear, but my wrists just throb all of the time. If I lean on them, they give out. It feels like a bone ache. 

 

I have had x-rays done on them, but nothing abnormal was found. 

 

Normal range of motion. 

 

Orthopedist just told me to ice and wrap when they hurt, but since it happens in spurts (a few days at a time of pain, then a few days rest, then pain again) he didn't know what it was. ???

 

Has anyone had experience with this? Who do I see? 

[Slache]

I only had this with my ankles. Going to the doctor was a waste of money for me. Strength training was the only thing that helped, but it made a huge difference.

[Hunter's Moon]

I only had this with my ankles. Going to the doctor was a waste of money for me. Strength training was the only thing that helped, but it made a huge difference.

 

I could see doing this if weakness was my only issue, but the pain in my wrists can be downright debilitating at times. 

[umsami]

Start with your general practioner….or maybe a rheumatologist? No idea. 

[Hunter's Moon]

Start with your general practioner….or maybe a rheumatologist? No idea. 

 

I set up an appointment for Monday. 

 

I am only 20, and this is extremely frustrating. 

 

I considered asking for a referral to a rheumatologist if he does not bring it up as a possibility. 

 

They did an X-Ray awhile back that showed nothing, but I wonder if a regular X-Ray is different from a joint X-Ray? 

[Truscifi]

Maybe talk to your GP and ask for a referral for physical therapy? A therapist was the one to finally figure out my chronic joint pain. And the therapy strengthened the muscles to support the joints while also treating pain and going at the slow pace I needed at the time but would have been too impatient to do on my own.

[Truscifi]

I set up an appointment for Monday. 

 

I am only 20, and this is extremely frustrating. 

 

I considered asking for a referral to a rheumatologist if he does not bring it up as a possibility. 

 

They did an X-Ray awhile back that showed nothing, but I wonder if a regular X-Ray is different from a joint X-Ray? 

 

Your GP can also do a blood test to check for rheumatological issues - I don't remember the name of it, ANA panel maybe? It doesn't tell you what the problem is if it is positive, there are a bunch more tests to narrow it down, but if it is negative you probably don't need all those other tests. At least that is my understanding based on what I and my mom had done.

[Slache]

I could see doing this if weakness was my only issue, but the pain in my wrists can be downright debilitating at times. 

 

I felt the same way. I don't believe strength training cured the condition, but it lessened the symptoms.

[Harriet Vane]

You need a rheumatologist.

 

Pain that does not show up on an x-ray is often a connective tissue problem or muscle injury.

 

There are a number of possibilities for this, ranging from simple tendonitis to rheumatoid arthritis. You might also ask about Ehler's Danlos or other connective tissue disorders.

[ocelotmom]

Orthopedist would be my first suggestion, but you've already done that.

 

Next I'd look for a general/family practitioner who is a DO (Doctor of Osteopathy - it's an alternative doctoral degree with the same scope of practice as an MD) - they've had extra training in the musculoskeletal system. A doctor (MD or DO) specializing in sports medicine might also be a good option.

[Hunter's Moon]

Thanks for the advice.

 

I set up an appt with my GP for tomorrow morning. The pain has increased and spread. My left hand fingers are almost unusable -- stiff and clumsy and throbbing. Now both shoulders are painful and stiff.

[Lolly]

Rheumatologist. And, try heat instead of ice. Or, a combination of both-alternating.

[Tiramisu]

You need a rheumatologist.

 

Pain that does not show up on an x-ray is often a connective tissue problem or muscle injury.

 

There are a number of possibilities for this, ranging from simple tendonitis to rheumatoid arthritis. You might also ask about Ehler's Danlos or other connective tissue disorders.

 

I agree with Harriet. Since you mention weakness and normal range of motion, I'm curious if you just mean not having a limited range of motion that you would expect in RA, for example, because I also wonder if you could you be having symptoms associated with hypermobility. You may want to read about benign joint hypermobility syndrome or Ehlers-Danlos and see the kinds of issues that people have who are born with those conditions and see anything sounds familiar.

[Tiramisu]

Thanks for the advice.

 

I set up an appt with my GP for tomorrow morning. The pain has increased and spread. My left hand fingers are almost unusable -- stiff and clumsy and throbbing. Now both shoulders are painful and stiff.

 

Okay, nevermind what I just said, stiff clumsy and throbbing doesn't sound like a heritable connective tissue disorder like EDS. If you are having issues with symmetrical joints, it could be RA.

 

I hope you feel better.  :grouphug:  :grouphug:  :grouphug:

[Hunter's Moon]

Okay, nevermind what I just said, stiff clumsy and throbbing doesn't sound like a heritable connective tissue disorder like EDS. If you are having issues with symmetrical joints, it could be RA.

 

I hope you feel better. :grouphug: :grouphug: :grouphug:

It seems I am waking up daily with new symptoms lol

 

Thanks :)

[Harriet Vane]

Based on the escalation of your symptoms, I would advise you to get to a doctor ASAP. I would also say to get a referral to a rheumatologist quickly. When you make the appointment, tell them how quickly your symptoms have escalated and try to insist on an appointment sooner rather than later.

[chocolatechip]

I have no advice, but I wanted to offer prayers and hugs. Hope you can figure out what's wrong and start feeling better soon!

[Hunter's Moon]

Based on the escalation of your symptoms, I would advise you to get to a doctor ASAP. I would also say to get a referral to a rheumatologist quickly. When you make the appointment, tell them how quickly your symptoms have escalated and try to insist on an appointment sooner rather than later.

I am glad to see that I am not the only one alarmed by the rate this seems to be developing.

 

It is so easy to talk myself into thinking that it's not as bad as I think, etc. But trouble with grasping and the widespread pain is reminding me this is not normal.

 

I just hope the GP does not give me trouble with getting the referral. I pray he has an open mind and is willing to listen.

[umsami]

Do you even need a referral?

 

Not all insurance companies require one…you might want to check, just in case.  BUT…I really don't see your having trouble getting a referral.  

[Hunter's Moon]

Do you even need a referral?

 

Not all insurance companies require one…you might want to check, just in case. BUT…I really don't see your having trouble getting a referral.

My insurance does require a referral, unfortunately.

 

I think I am unnecessarily worried about not getting one.

[Tiramisu]

My insurance does require a referral, unfortunately.

 

I think I am unnecessarily worried about not getting one.

 

Just to let you know, your regular gp is able to order basic autoimmune bloodwork, like ANA and RA factor even before you get in to the rhuematologist.

[Tiramisu]

P.S. He can also request sed rate and C-reactive protein. Sometimes there's a wait for a specialist but if you get these and the RA and ANA done and they are positive, they might help get you in more quickly.

[Hunter's Moon]

Just to let you know, your regular gp is able to order basic autoimmune bloodwork, like ANA and RA factor even before you get in to the rhuematologist.

 

 

P.S. He can also request sed rate and C-reactive protein. Sometimes there's a wait for a specialist but if you get these and the RA and ANA done and they are positive, they might help get you in more quickly.

 

Thank you so much! 

 

I will bring these up to him. 

[Hunter's Moon]

So the physical exam was normal. There was no swelling going on at that time.

 

He ordered RA, ANA, Uric Acid, Lyme's, and sed rate. Everything but the ANA should be back by Monday (ANA takes a week).

 

He said if results are positive, or even if they are negative but the problems are still there, he will send me to a Rheumatologist.

 

He also prescribed a twice-a-day anti-inflammatory but the name escapes me at the moment.

 

He took my pain seriously and I pray *something* shows up in the bloodwork so we can move forward.

[Truscifi]

So the physical exam was normal. There was no swelling going on at that time.

 

He ordered RA, ANA, Uric Acid, Lyme's, and sed rate. Everything but the ANA should be back by Monday (ANA takes a week).

 

He said if results are positive, or even if they are negative but the problems are still there, he will send me to a Rheumatologist.

 

He also prescribed a twice-a-day anti-inflammatory but the name escapes me at the moment.

 

He took my pain seriously and I pray *something* shows up in the bloodwork so we can move forward.

 

I'm glad he listened and is taking you seriously. I hope you find answers soon. :grouphug:

[Hunter's Moon]

I'm glad he listened and is taking you seriously. I hope you find answers soon. :grouphug:

Thank you :grouphug:

[Hunter's Moon]

UPDATE: 

 

All results came back, including ANA. 

 

Everything EXCEPT sed rate came back within normal ranges. My sed rate was 33 when the highest normal value is 20. 

 

His nurse called and said it is only mild inflammation and could be an inflammatory response to pretty much anything. He wants me to continue the twice/day Sulindac for the remaining time on my prescription (about 25 days) and if the pain continues to make another appointment and we will go from there. 

 

I'm on the fence about his response -- yes, the test results show minor inflammation. But I am in pain. BUT, I completely understand not wanting to waste my time and the specialists by sending me there if it isn't chronic and clears on its own. 

[Catwoman]

Thanks for posting the update. :grouphug:

[katilac]

Had you been taking OTC pain relievers for it?  Perhaps a new kind, or more than usual? 

 

I had always taken Aleve on occasion with no problems. The one time I took it several days in a row, it was horrible - increased and spreading joint pain with a side order of general weakness. It took me a while to figure it out because I had taken it before with no problem, plus the side effects were why I was taking it in the first place, lol. 

 

So, check the side effects of any and all meds you are on. Look it up online for a more complete and detailed list. If possible, maybe go off all meds for a few days. I knew within a day of stopping the Aleve that it was causing problems. 

 

 

[Harriet Vane]

In your shoes, I would go see a rheumatologist. You are only 20 years old. What you are describing is not normal, especially since you have not mentioned specifically injuring those areas. I truly don't want to alarm you, so please bear in mind that I am not a doctor. However, if you were my daughter I would say that the dr is under-responding and I would take you to a rheumatologist.

 

Perhaps you can make an appointment with the rheum and cancel if it gets better? Sometimes it takes a while to get in with a specialist.

[Veritaserum]

My sister was diagnosed at 18 with arthritis (rheumatoid as well as a rarer type). Elevated SED rate was what tipped her doctor toward investigating arthritis. She's 38 now and does well when properly medicated, but it was shocking to be diagnosed so young.

[Hunter's Moon]

Had you been taking OTC pain relievers for it?  Perhaps a new kind, or more than usual? 

 

I had always taken Aleve on occasion with no problems. The one time I took it several days in a row, it was horrible - increased and spreading joint pain with a side order of general weakness. It took me a while to figure it out because I had taken it before with no problem, plus the side effects were why I was taking it in the first place, lol. 

 

So, check the side effects of any and all meds you are on. Look it up online for a more complete and detailed list. If possible, maybe go off all meds for a few days. I knew within a day of stopping the Aleve that it was causing problems. 

 

I took Ibuprofen exactly twice -- when I saw that it wasn't doing anything I stopped. 

 

I actually decided to avoid Aleve and other OTC pain relievers so I could describe to the doctor exactly where the pain was. 

 

Thank you for the heads up, though! I never would have thought that pain meds could increase pain after working effectively for awhile.

 

In your shoes, I would go see a rheumatologist. You are only 20 years old. What you are describing is not normal, especially since you have not mentioned specifically injuring those areas. I truly don't want to alarm you, so please bear in mind that I am not a doctor. However, if you were my daughter I would say that the dr is under-responding and I would take you to a rheumatologist.

 

Perhaps you can make an appointment with the rheum and cancel if it gets better? Sometimes it takes a while to get in with a specialist.

 

The issue with my insurance is the need for a referral. 

I will call around and see if I can find one that does not require a referral, but they also might not take my insurance. 

This is something I would be willing to pay for OOP, though. 

 

My sister was diagnosed at 18 with arthritis (rheumatoid as well as a rarer type). Elevated SED rate was what tipped her doctor toward investigating arthritis. She's 38 now and does well when properly medicated, but it was shocking to be diagnosed so young.

 

Quite honestly, I was a bit surprised he did not order CRP when he saw my SED rate was elevated. I know they measure the same thing (general inflammation) but some doctors believe it is a better indicator of inflammation severity. 

[Tiramisu]

I wouldn't give up. And I'd be inclined to ask for a referral to a rheumatologist. It might be some time before you can get in and you can track your symptoms in the meanwhile.

 

It's a long shot but I'd also think about food allergies or intolerances. Keep a food journal and record any symptoms.

 

How is your GI system?

[Hunter's Moon]

I wouldn't give up. And I'd be inclined to ask for a referral to a rheumatologist. It might be some time before you can get in and you can track your symptoms in the meanwhile.

 

It's a long shot but I'd also think about food allergies or intolerances. Keep a food journal and record any symptoms.

 

How is your GI system?

 

I have had GI issues for a few years. I do have food allergies (peanuts, other legumes, tree nuts) and I am lactose intolerant. 

 

I have been heavily considering the possibility of cutting out dairy altogether, as it can cause inflammation and I already have sinus issues from too much mucous. 

 

This has given me some things to think about. Thank you. 

[Tiramisu]

I have had GI issues for a few years. I do have food allergies (peanuts, other legumes, tree nuts) and I am lactose intolerant. 

 

I have been heavily considering the possibility of cutting out dairy altogether, as it can cause inflammation and I already have sinus issues from too much mucous. 

 

This has given me some things to think about. Thank you. 

 

I think it couldn't hurt for you to do some reading about Crohn's, also known as inflammatory bowel disease. That might explain the combination of GI, joint issues, and elevated sed rate. I'm really not an expert at all but this is what all those things made me think of.

[Harriet Vane]

I hate the whole referral thing. :grouphug:

 

Call him back and insist on the the referral. If he won't give one, take your lab results to another doctor and insist on a referral.

[Hunter's Moon]

I think it couldn't hurt for you to do some reading about Crohn's, also known as inflammatory bowel disease. That might explain the combination of GI, joint issues, and elevated sed rate. I'm really not an expert at all but this is what all those things made me think of.

 

I mainly have GERD and lactose intolerance. Nothing that really screams "Chron's". 

I hate the whole referral thing. :grouphug:

 

Call him back and insist on the the referral. If he won't give one, take your lab results to another doctor and insist on a referral.

 

We have an online system for prescription refills, test results, and appointment scheduling. I sent the referral through the system, and the nurse usually emails back for more details. If she reiterates what she said in our phone call (continue taking Sulindac as prescribed, only mild inflammation, make an appointment after medication runs out), I will emphasize the abnormal aches and pains that my 20-year-old body is experiencing, as well as the fatigue. 

 

I couldn't lift the lid off of a tote this morning, which is very light. Thankfully, the pain has lessened in intensity, but it seems to have settled in my fingers and ankles this morning. Last night it was my knee -- I could barely walk because it hurt to bend the hinge. 

[ILiveInFlipFlops]

Joint pain is a commonly cited symptom of gluten intolerance/celiac. It's entirely possible to develop celiac disease later in life. And my non-celiac gluten intolerance manifests itself in the forms of terrible GERD and other uncomfortable GI issues. Can you try giving up gluten for a few weeks and see if anything improves? (For me, this means oatmeal as well. Even certified GF oats give me trouble--something about a protein structure similar to that of gluten.)

 

I'd also push for the referral at the same time, with your current doc or another one. 

[6packofun]

OP, my daughter had the SAME symptoms that you did.  It was so strange to see your post as our 17yo dd was dealing with it!  She had some serious arm pain and her joints were swollen and some were red.  We were *convinced* that her blood tests would come back positive for Rheumatoid Arthritis.  NOTHING was positive except for that sediment thing for general inflammation, just like you!  We can get a referral to a rheumatologist, but we're going to play wait and see for now.  Swelling decreased after about 4 days of staying the same, and then the pain gradually went away over several more days.  SO weird.  I feel very unsatisfied with our "results".  :(

 

I have been reading about anti-inflammatory diets and think that doing an elimination diet for dd would be helpful.  Also, this dd tends to have some of the worst eating habits of all of us.  She is a very picky eater and likes fried foods, etc.  (I don't MAKE them, but she gets fast food way too much!)  The books I've been reading are The Immune System Recovery Program by Susan Blum and Clean Cuisine (8 week anti-inflammatory nutrition program) by Ivy & Andrew Larson.  The latter is much more readable and probably doable, but the former is FULL of info.  (I don't get overwhelmed by all the suggestions, but just be forewarned that they want to eliminate a LOT and suggest a ton of supplements.  Just take what you want and forget the rest without guilt!  lol)

[6packofun]

Also, ibuprofen didn't even *touch* dd's pain.  Someone recommended Zyflamend Whole Body anti-inflammatory, which is from New Chapter and all-natural.  Dd was feeling better by the time I had a chance to order it so we haven't tried.

[mamajag]

Be aggressive about this. My little sister was diagnosed with arthritis at 18 months. If you're still having symptoms when the meds run out, push for more. It's nothing to play with, and at your age you have a lot of life left to live with those joints so you want to make sure that if there is an issue you get treatment ASAP.

[elfgivas]

fwiw, sometimes its the way a doctor hears something that makes the difference.

 

eg.   i had had extremely awful visits from aunt flo for more than a year.  i talked about how much, yada, yada, yada and primary care doctor took the Wait and see approach.

then one time i said "i lie there at night wondering if i should go into urgent care for hemorrhaging.  he sat up, said "what did you just say?"  and i repeated it, and had an ob/gyn appointment 48 hours later.

 

so maybe today you could call and say, "i really wanted to follow doctor's advice about waiting, but yesterday i couldn't take the lid off a tote, and last night i almost fell when i got up because my knee was so bad.  i don't think i can wait another three weeks.  i need help now."  and then at least you will know he heard the impact, not just the "i'm in pain".

 

good luck!

ann

[Truscifi]

I took Ibuprofen exactly twice -- when I saw that it wasn't doing anything I stopped. 

 

I actually decided to avoid Aleve and other OTC pain relievers so I could describe to the doctor exactly where the pain was. 

 

Thank you for the heads up, though! I never would have thought that pain meds could increase pain after working effectively for awhile.

 

 

The issue with my insurance is the need for a referral. 

I will call around and see if I can find one that does not require a referral, but they also might not take my insurance. 

This is something I would be willing to pay for OOP, though. 

 

 

Quite honestly, I was a bit surprised he did not order CRP when he saw my SED rate was elevated. I know they measure the same thing (general inflammation) but some doctors believe it is a better indicator of inflammation severity. 

 

I would push a little more, whether for more tests through this doc or the referral is up to you. Either way I don't agree with wait and see if you are in so much pain you can't function.

 

:grouphug:

[Hunter's Moon]

Rheumatology appointment on Oct 13th! A lot sooner than I thought it would be.

[Catwoman]

Good luck at the appointment! :grouphug:

[Hunter's Moon]

I had my Rheum appointment on Monday. She did an exam and asked questions (obviously trying to rule out RA and Lupus). She said as there are no signs of external inflammation (except my right ankle, which was injured 5 years ago) she feels it is temporary. 

 

She repeated the tests, and did a few more. My sed rate is still elevated (26), but has went down from 33 from my original tests. I go back to see her in 6 weeks. 

 

My ankles and wrists hurt me daily, but only on occasion now does it spread to my fingers, toes, knees, elbows, and shoulders. 

[texasmama]

What signs of external inflammation was the doctor looking for?  Redness and swelling?

 

I do hope your pain is temporary.

[Hunter's Moon]

What signs of external inflammation was the doctor looking for?  Redness and swelling?

 

I do hope your pain is temporary.

 

Yes. She also asked about rashes, etc. 

[Hikin' Mama]

I have pain in my wrists and I also do weight training. If I don't do it the right way the weights make it worse. I went to a physical therapist. Not only did she give me exercises to do to help strengthen my wrists, she also told me the way I need to lift weights to prevent putting extra strain on my wrists. Best of luck!

[creekland]

I've fallen in love with steroid shots.  I didn't actually realize how much things were hurting until afterward.  Now it's quite mild and doesn't linger.  I don't know that these are a cure, but it's sure provided a nice break (so far) and decreased my intake of ibuprofen some.

 

I'm not sure if those are optional for you.  The shots aren't fun, but are worth it for me.  It's nice being able to DO basic things again without paying for it for hours.