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Undiagnosed

May 13, 2016 8:31 PM

Hi everyone. I've been dealing with random joint pain for about 5 months now. The first three months I chalked it up to working a lot and working outside because the weather is nice. I got to the point where I couldn't ignore it any more.

I have completely random pain, in my joints, mainly in my upper body that moves with no warning throughout the day/night. The first Doctor I saw literally said, "Well something is going on but I don't know what." Blood tests indicated my inflammation amounts to be double what normal is. 12.5.

I am suspicious that its infectious arthritis but was told that I'd be way sicker and hospitalized if that were true. Evenings are bad, mornings are bad and sometimes my throat hurts like I have strep throat. One side or sometimes both sides. It usually goes away during the night.

TMJ Cat Scan showed calcification but my white blood cell count is normal so no infection they say. I don't agree. I have a localized site of pain just under my left ear that's tender to the touch and constant since last September. They keep telling me it's a dental issue and not related.

I'm getting worn down and my tolerance is very low now. I also have kidney disease so I can't take NSAIDs or Advil type pain killers. Tylenol only and it isn't even taking the edge off.

I don't know how some of you are dealing with what you do every day!

Nanci

May 14, 2016 1:35 AM

My first thought is what is your thyroid numbers.

Second have they tested your vitamin D levels? I was told low results could cause pain.

Third thought fibromyalgia. Especially the moving pain part. For years before being diagnosed I complained if bone pain and joint pain.

Is that your sed rate number that you refer to as indicating inflammation? Mine runs around 28 now down from around 45. Normal sed rates are 0 to 20 for women. The sed rate test does not say what is wrong or really give a clue it just shows something is amiss which if this is the test may be why the doctor said he didn't know what was wrong.

There are so many conditions that have similar symptoms the best suggestion would be to keep on with the doctors. I know it can be frustrating, been through the doctors not knowing what was wrong but unfortunately sometimes there just is no easy answer more like process of elimination.

May 14, 2016 9:17 PM

Could be Fibromyalgia. I was just diagnosed with it on May 3rd 2016 after years of pain and testing for Lupus. Apparently my symptoms have flared due to my reaching menopausal age. I have been in pain for many years due to a back injury I had in my early twenties. Might be worth going back to your doctor especially if it is affecting your sleep. If it is Fibro, you will always have some kind of pain but the right meds should give you enough relief to function on a daily basis. I wish you well in your search for an answer.

May 14, 2016 11:53 PM

Babs I also have fibro. They first tested me for thyroid and vitamin D which can also cause pain. I was diagnosed chronic pain and chronic fatigue in 2006, then Hashimoto's, vitamin d deficiency, followed by fibro with multiple others along the way and many worse after.

As you know the road to the fibro diagnosis is a long journey. It is also a diagnosis that is a blessing and a curse. I am 47 now being dealing with some pains since my 20s.

It is unfortunate but even the meds can be worse than the fibro. Been through them all I can only take gabapentin similar to lyrica. Unfortunately it does not touch the pain. Part of the misinformation of fibromyalgia a pill does not cure all. God knows my TV is at risk every time that perky lady comes on the lyrica commercial talking about how she is cured. I have given into narcotics and am currently on the fentanyl patch. Even though my doctor is willing to up my dose I am hesitant to. Giving it a few more weeks to see how it goes.

Have they looked more into your back? As they diagnosed me fibro every pain fell under that blanket. Last year I had mri completed showing I also have spinal issues. Just a thought.

May 15, 2016 10:39 PM

Thank you everyone. I am definitely keeping up with the Doctor visits to get an answer. Finding this app gas worked wonders as I'm not likely to forget to tell the Dr. anything now. Perhaps they'll take me more seriously now. This weekend was a waste of sleep. I'm not a napper, but all weekend if I was sitting still long enough, I'd find myself waking up 1,2,3 hours later.
Stay strong fellow pain sufferers! Your info and support means a lot.
Nanci

May 18, 2016 12:41 AM

I have an appointment with the Urgent Medical Diagnostic Team at my local hospital tomorrow. My first real assessment in three months. I'm so glad it's finally happening and a bit frustrated because I know I won't get my answer tomorrow. In a lot of pain tonight which is odd because just this afternoon I was thinking I was doing well enough to mow for a bit. Nope. It still comes on fast and randomly.
Take care of yourselves!
Nanci

May 18, 2016 1:22 AM

I'm awake. Pain in my legs has me crying. Mine comes on fast & randomly too. I have MS, fibro, arthritis, low vit D, and a bunch of other issues. These were DX in early 2000's but I moved from CA to UT and had to start all over with new docs 2 yes ago so my meds are nowhere near helping enough. But, keep talking to docs. Make lists of your concerns to bring. Keep up with pain journal. It does help. Best best best luck with your appt tomorrow.

May 18, 2016 6:31 AM

I am undiagnosed as well. Since the birth of my youngest nearly a year ago I have had pain in my back, abdomen, both legs and my feet and hands as well as daily severe headaches with intermittent migraines. My doctor has me on vimovo, muscle relaxers, SSRI'S gabapentin, and butalbitol acetaminophen. During the times of severe pain I have to take a combination of these meds to be able to mother my children, and then I'm so drowsy we can't leave the house.
I'm desperate for a diagnoses so we can go on to treat the underlying cause...we have determined I have a vitamin D deficiency but that's all the testing she has done so far.

May 19, 2016 2:08 PM

Undiagnosed, I'm sorry you're going through all this unknown. We've all been through it. It took me from 2007 to 2012 to be dx with fibro. It took 2 more years to find out I have Sjogrens and hypothyroidism, which all three share many common symptoms. I have vitamin deficiencies, including D & B's. It can often take time to pin down a dx, or more than one. And you may read about things others have gone through and think, "wow, that fits me!". If you do, ask the doctor. Research and keep notes like you are doing. Hopefully you will know something soon. Don't get disheartened if a treatment doesn't work for you, because we're are all different and nothing works for everyone. Hugs& prayers as you fight to find answers and get some relief! 🙂💕🙏🌼

May 21, 2016 12:09 AM

Thank you for the nice comments everyone. I spent 3 hours with the doctor and basically went through everything that had happened with me since my kidney disease diagnosis 26 years ago. I had X-rays and blood tests but not many answers from the doctor. I realize that it would be foolish for him to guess and if I thought about it, I don't want him to. I want, need, a definitive answer. He mentioned unusual calcification in my joints, but I find that confusing because why would my pain travel around my body? I go back to talk about the results in about a week, so the waiting continues.

May 21, 2016 4:25 PM

Undiagnosed...I hope this sheds some light. Don't get disappointed if it doesn't. We all have a journey some longer than others. The next step should be to see a rheumatologist. Best wishes

May 22, 2016 1:32 AM

Thank you Shammagren. It horrifies me to read that it has taken some of you years to find your answers and yet even with the diagnosis here you are, still in pain. This is affecting my life in a huge way and yet it feels like I'm the only one really concerned about it. I'm very afraid of a misdiagnosis. Chronic pain needs to be talked about more in the media. Cancers make billions of dollars but nobody can find a non narcotic pain killer that isn't going to destroy my kidneys? That's ridiculous.
Sorry, venting here. When I was in x-ray a man was being wheeled out and he was in such pain it broke my heart. He screamed just by going over a seam in the floor on the gurney. if it ever got that bad I think I would rather be dead.

May 22, 2016 3:25 AM

Hi @undiagnosed,
You may have a way better experience than we have, find a great, caring doc. Get answers & treatment that works. People like that aren't on this app. Don't give up. Your job for now is to find the best help you can. Best wishes!😃

May 22, 2016 10:05 AM

Hi there, we share your pain and support you. Every so often I have the energy to get another consult but I have been told over and over that doctors don't know what is causing my pain. The "best orthopedist" in the area looked at me and said "I don't know what's wrong with you". As I wheeled out of his office, he offered no follow up or further resources. Find someone who is familiar with CRPS Complex Regional Pain Syndrome as that would address how the pain moves around. It's not in your head. It's real. Take care.

May 22, 2016 2:51 PM

Hi, I'm so sorry if I sounded uncaring!! I only meant that I hope one of us escapes the nightmare. It was decades before I stopped thinking it was all my fault. Doctors couldn't find anything wrong (in the 1900's) Till I had the right combination of symptoms and they found MS, then fibro then more... I do struggle with invisible pain on a daily basis.
I was hoping you won't have to. ((Gentle hug))

May 30, 2016 7:59 PM

Well today I got my diagnosis. The specialist thinks it's Lupus. (OMG I had to Google it - had no idea what it was) He is putting me on prednisone for 10 days to see if it helps my pain but was clear that even if it helps my pain, I can't stay on it. My kidney disease is complicating my symptoms and the medication I can take. Right now I would be happy with less pain. I'll see in a few days if it's helping at all.
Auto, I didn't take offence with your comment. I agree and said myself that my worst fear was no diagnosis. At least now it has a name.
Nanci

May 31, 2016 1:16 AM

That sounds like a positive development. I don't have a current diagnosis and will be seeing pain management in a week, after giving up on orthopedists and podiatrists. I may go back to Chinese medicine, rheumagologist, or look for an osteopath. Chiropractic has only made my pain worse. For a long time it let me stay optimistic that "nothing was wrong", but now I yearn for a clear diagnosis to dictate a treatment plan. Instead of taking 10 supplements a day. I also have a kidney problem and can't take many medicines.

Jun 01, 2016 12:06 AM

Glad you are making headway. Prednisone has a whole long list of bad it can cause the body so I hope there is another option for long term.

Jun 01, 2016 12:35 PM

Read up on Prednisone before you decide to take it. I have lupus too I turned it down. I'm on methotrexate and plaquenel. Sorry you have lupus but glad you have answers. If you ever want to chat let me know.

Jun 02, 2016 11:17 PM

Hi everyone!
Day 3 Pain Free! (Day 3 on prednisone) Right now I'm very grateful to have no pain and getting all the stuff done that has fallen by the wayside like colouring my hair and changing the bedsheets carrying the dog food in from the car. All the stuff I NEVER THOUGHT WOULD BE A PROBLEM. I mean I'm the type of person who carries all the groceries into the house in one load.
Everyone has warned me about the prednisone and so far I have no side effects. I only have a week to go so I'm relishing the time. I have no idea what will happen after this week.
I wish all of you could have pain free days!
Nanci

Jun 03, 2016 7:45 AM

Nanci, I couldn't be happier for you that you have had 3 pain free days!!! Prednisone can do amazing things (although there are drawbacks) then again, there are with ALL medications. At this point I'd settle for 15 minutes just to remember what it feels like tc not have pain. Enjoy this time and I pray that it lasts a long time for you. {{{Hugs}}}💕🙏🏻🌻😊

Jun 03, 2016 8:38 PM

Thank you for your sweet words.
It was nothing short of a miracle. I had no idea that I'd have no pain. A little worried about what will happen when I have to go off, but thoroughly enjoying the pain free time until then.
I've heard a lot about going gluten free to help relieve pain from Lupus. Anyone have experience with that?
Nanci

Jun 06, 2016 1:10 PM

I'm glad to hear the positive results from the Prednisone. Hopefully it's broken the vicious cycle and you'll have more pain free days than painful days. I'm not doing a gluten free diet, although I probably should since I have allergies to wheat. I am trying to reduce the wheat in my diet though. But I have been reducing the sugar intake, as it's connected to inflammation (sugar). I wish you the best! Hugs & prayers! 🙂💕🙏🌼

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