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An_258412 posted:
First time I've ever posted on a message board. I'm starting to run out of options. Here's my story... Im a 34 year old male about 6 ft and 170lbs. About 2 years ago I began noticing that my arms, hands, and hips were hurting, not your typical pain, but deep bone pain. Went to my regular doctor and she looked me over, and said I probably need to go see a rheumatologist. Went, they did a thorough exam. All that was wrong was that I had low vitamin D (we will resist this point later). So I was given a script for 50,000 IU of D (weekly dose). Weeks pass with no improvement. Went back to regular doctor. Had a battery of blood work done. Nothing. Had an MRI done on lower back. Nothing. Got sent to a neurologist. Got an MRI done on middle of the back. Nothing. At this time my pain has increased about ten fold, legs are starting to kill me, my back, arms, hands, and hips feel as if though I was beat. It always feels so deep, and I'm starting to believe it's in my head. So anyways, this neurologist sends me to his physiotherapist buddy, so he can get some money too. I had a nerve conduction study and electromyography. Those hurt. Just saying. Everything came back normal, so he had an MRI done of my upper back. Nothing. But was prescribed some steroids. Maybe it'll work, its worth a shot. No. The physio then thought it could be my SI joints. I sit a lot for my job, I travel a lot in a medium size vehicle for my job, so this theory was holding some water. I had my SI joints injected with steroids. I know the success rate isn't great for this procedure, but was hopeful. Nothing. At this point I was tired of being poked, probed, and prodded. And after the EMG and NCS I didn't want to deal with doctors anymore. I survived about 4 months before I went back to my regular doctor. At this point my body is riddled with pain, I'm starting to become majorly depressed. I was prescribed some antidepressants and pain pills, and as a last ditch effort had another MRI done, this time my brain. Had to rule outs MS. Now I'm hoping for MS just to have a diagnosis. Luckily it was negative. She set me up with another neurologist, one of the best in the state, or another buddy that wanted some money. It's all the same, right? No appointment for six weeks, so I asked to go see an ortho in hopes he could help. He was actually my favorite. He couldn't believe everything I had done with little to no treatment, just curious looks and shrugs of shoulders. He thought the hip pain could be bursitis and the body pain was a manifestation of depression pain. He gave a steroid shot in my hip, but let me pick where he injected it. He thought if I could point out the most painful spot, then he might be able to hit the bursa sac. Nothing... sigh... So the day comes when I get to see the Neuro. What a let down, he had no idea, told me he'd sleep on it and maybe something could come to him, but told me that everyone is low on vitamin D and that test is BS because the range is set to low, that's why more and more people are coming up being "low on vitamin d". Somewhere in the mix I was also tested for Lyme disease. So here we are today. My back and neck is killing me my arms go numb for no reason, I have tingling sensations in both my arms and legs,with pain in legs, arms, and hands. My hips feel like ive ran 50 miles. When i do anything remotely physical my body has this sore/tightness about it for days. When the weather changes I can really feel it. I'm an irritable mess. Writing this has made my hands cramp up. I'm at my wits ends. I hurt so bad, I just want to feel normal again. Anybody got anything?
Also, I'm no longer on antidepressants. The only meds I take are 625mg Welchol (post gall bladder surgery)
And my pain meds. I was told to get off the welchol by the 2nd neurologist but can't due to EXPLOSIVE diarrhea. That's fun to write.
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blessedladyptl responded:
This is a shot in the dark, but have you been evaluated for Fibromyalgia ? If all of these drs are connected, you may want try another facility or a teaching hospital. Did a neurologist do your EMG & NCS ?
 
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jlewis80 replied to blessedladyptl's response:
Yeah I had the EMG and NCS done, both came back normal. I also wonder if it could be fibro, but I don't know anyone who has been diagnosed. I'd like to know how there symptoms started, and what was the results of their tests. While other times I wonder about celiac or a gluten intolerance. I might repost this in the fibro discussion to see if anyone can help.
 
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annette030 responded:
Did the neurologist say why you should get off the Welchol?
I am unfamiliar with this med, could side effects be your problem?

Take care, Annette
 
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annette030 replied to jlewis80's response:
I have fibro. It did start out with pain, I was very lucky to have a family practice doc, who diagnosed me before he told me about it. That was more than 15-20 years ago.

Take care, Annette
 
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annette030 replied to annette030's response:
To answer the other parts of your questions, all tests must be okay for fibro to be diagnosed because there is no test for fibromyalgia specifically.

There is a test for celiac disease, so if you are concerned about it, get it done.

Take care, Annette
 
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blessedladyptl replied to jlewis80's response:
History of wide spread pain, tender trigger points, fatigue, cognitive or memory problems, depression and anxiety disorders and other problems can lead to a diagnosis of fibromyalgia.
 
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Anon_2912 replied to blessedladyptl's response:
Fibro is pretty much a "what it is not" diagnosis.....

We will never understand the complexity of the body (muscles/nerves) some will have pain with no explainable reason, others are just sensitive to things,
 
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suzyonsteroids responded:
I was recently diagnosed with Fibromyalgia.
I think I had been suffering with it in a milder form since I was 27 years old. I first saw a doctor because I had pain in my hands and feet and a burning pain in my shoulders. The doctor told me then and there that I would probably be on analgesics for the rest of my life. But I didn't want to hear that at 27 so I sought other healthcare options. I started seeing a chiropractor and was getting weekly massages for a while and that helped a whole lot. I took Motrin and Advil and that gave me some relief.
Now I am 57 and I recently had a full blown all over body experience which prompted me to get my blood tested.
The one blood test that was truly revealing was the SEDIMENT BLOOD TEST (ERS or Sed rate test). It actually shows the inflammatory activity in the body/muscles.
It was this test that gave the doctor the idea that I had Fibromyalgia. Nothing else fit.
My doctor and I figured I needed a strong anti-inflammaory and analgesic. I was put on a drug by Novartis called Volterene. I was getting good immediate results on that but still having breakthrough pain so now I am on prednisone (a corticosteroid) for 1 month and a half.
I have to say that I am very happy with the treatment so far. I have been able to have relatively pain free days (for me that means the pain is no debilitating). I am not constantly absorbed in my pain. So that is a good thing.
Since I am a long time associate with pain management, (having had to deal with pain for the last 30 years), I have also learned how to make myself feel as comfortable as possible.
Some things that work are:
Massages, hot soaks in Epsom salts, spa visit, analgesic rubs like Bengay, comfortable shoes - especially the Z-Coil shoes that reduce more than 50% of the shock on you feet.
Now I have added yoga and any other stretching exercises.
I try to swim daily. I find that the cool water and the free movement really help the most. Also the use of some marijuana for the breakthrough pain has proven very effective for me.
So I wish you all luck. You have to also learn to say no and not push yourself past the point of no return.
 
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annette030 replied to blessedladyptl's response:
There are tender points present with FMS, and there are also trigger points. They are totally different. Many people think they are the same thing.

Take care, Annette
 
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annette030 replied to suzyonsteroids's response:
I know about sed rates, they are not specific for FMS. It is good your doctor finally figured out your diagnosis, but please see a rheumatologist for verification. It is always a good idea to see a specialist who deals with what ails you no matter how much you like and trust your regular doc.

Take care, Annette
 
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meaningfulc1952 responded:
Hello An258412:


Wow, you sure have had a lot of tests done. They can't figure out what is causing you so much pain either. That is very strange. Have you seen a orthopedic dr.? I read your long message. I can't remember if you did. The neurologist could not find anything else going on either.


I would suggest that you find a pain mgt. dr. They are far much better in treating pain and especially when it is hard to diagnose. I don't know what state that you live in, but most pain mgt. drs. are the best way to go when you have pain and you don't know why or what is causing it.


Try and find a pain mgt. dr. and see if that helps. I have been going go a pain mgt. dr. now for many many years. Currently, I have a wonderful lady dr. that is terrific. She is from another country, but that does not matter. What matters is that she is very smart and knows pain mgt. and how to treat my problems.


I am so sorry that you are in so much pain. I would never wish that on anyone. It is true hell to be in so much pain.


Please find a pain management dr. and let us know what happens.


Meaningfulc1952


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