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Old 02-09-2013, 10:16 PM   #1
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Chronic all over muscle pain, joint pain, fatigue and headaches

Hi, we'll I only very recently joined this board. My initial reason was because of my back issues. I have had back problems since the swing I was on 18 yrs ago (I was a PE teacher) was broken and fell out from under me. A year and a half later was my 1st fusion, a year after that was a revision...an anterior posterior fusion L5/S1 with hardware. Continued chronic pain. 7yrs ago a spinal cord stimulator implanted and a year later a revision of that as well. I have been in pain management for the past 9 yrs- done very type of pt imaginable.

Now, 5 yrs ago I went to my general Dr because of expensive fatigue. The dr told me I was fine, I insisted on a blood test. He said ok followed by "but you know, you're as old today as you have ever been" I replied with " I'm ONLY 38!" Blood test came back fine he said. I have also seen him for migraines and general headaches all the time. I have also mentioned to him how physically I always feel worn out. Initially I thought a lot of my overall pain was due to my back...but my thinking is changing. 3 yrs ago in water therapy, the other patients and I would always discuss our ailments and what medicine we were taking, what worked. They all said I probably had fibro ( every one of them had it).i of course said no, it's because of my back. I started going to massage therapy almost 2 yrs ago because of a car accident...my daughter and I were returning from dropping off a foster puppy and the car in front of me stopped short to make a left turn. I stopped and a few seconds after, a car slammed straight into the back of us, she had never hit her breaks and according to the other driver she said she was going about 50 mph) so I went to massage therapy for my neck and she was working wonders so my pain management dr sent me to her for my back. The first time she started to work on me, I was wincing when she was working the upper part of my back- shoulder blades, shoulder area. She asked me if I had fibro, I said no, it's just the pain from my back is now everywhere. Over the course of the first month of treatment, she mentioned it several times...she works on my whole body because I am in pain all over.
2 yrs ago I did have an inccident 2 1/2 yrs ago when visiting my mother. I woke up in the morning and my thumbs were very sore and painful. As the day progressed, my elbows and shoulder became very painful to move. I took my kids to listen to music outdoors, when I went to stand from sitting, I couldn't. My hips , knees and ankles were SOOO painful and felt locked up. When I tried to push up with my hands, I couldn't...my children got under each of my arms to help me up. I couldn't drive so I had to call a cab. I couldn't even hold a cup, grip anything, move anything. Scared I rolled into bed, with my mother helping roll me on. Went to a dr the next day- joints not hot or swollen. Went for blood work, including a test for lupus, everything negative.

So this brings me more up to date...I have constantly been fatigued, exhausted no matter how much sleep, although even with ambien I don't sleep great. So, the past 6 months, my joints have all been very sore, all my muscles extremely tight. I even developed Achilles tendinitis ..my Achilles was apparently tearing and it formed a huge "knot" at the back of my ankle and pain right under my heel. My left one was horrible and the rt one not far behind.
I can not sit in one position too long , even lying down I have to readjust my legs and arms often because they get so stiff. My wrists have been extremely painful the past few months and are now clicking.

Now mind you I take a good deal of medication already : 100mcg duragesic patch (fentanyl ) change every 2days, zanaflex muscle relaxer 4x a day, roxicodone 4x a day, mobic 2x a day, Zoloft, ambien and Voltaren gel . I couldn't imagine any other medication could possibly help me.

I do want to find a new general dr because, well I hardly go to him, but when I do I feel like he looks and treats me like " why are you here again" .when I went after my car accident, he didn't even look at me. I had called constantly for weeks because I had such severe headaches after the accident - finally got a scan 6 weeks after. Anyway,I have to go to him to get a referral to see a rheumatologist . SOOO my question...does ANYONE have any other suggestions or ideas? Please, I'm open to anything.

 
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Old 02-10-2013, 06:11 AM   #2
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Re: Chronic all over muscle pain, joint pain, fatigue and headaches

It's quite possible to have fibromyalgia AND back problems AND whatever else... you don't have to just have one illness at a time (unfortunately). Going to see a rheumatologist is the best idea - they should take your history, do some blood tests, and tell you if they think you have fibromyalgia. Knowing doesn't really change anything, but it's a lot better than the NOT knowing!
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Old 02-10-2013, 06:55 AM   #3
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Re: Chronic all over muscle pain, joint pain, fatigue and headaches

Thanks...I guess I figure I'd like to know whats going on with me....even if they can't do anything else. A reason for feeling this way would surely help me feel better.
Thank you

 
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Old 02-10-2013, 07:48 AM   #4
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Re: Chronic all over muscle pain, joint pain, fatigue and headaches

One of the best things I have found was to get a copy of my bloodwork and research every bit myself! Even though stuff like thyroid and B12 fall within the "normal" ranges it was not optimal for my body.

Best wishes and I hope you can find relief really soon!

Unless you can find an open minded doctor that will try/research other than anti-depressants and pain pills, which I have not.

 
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Old 02-10-2013, 11:25 PM   #5
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Re: Chronic all over muscle pain, joint pain, fatigue and headaches

Of course I tried to make an appointment directly with a rheumatologist and I have to go to my regular dr to get a referral. I know he'll give me one, but I really would like to find a new regular dr because I never feel like he pays any mind to what I tell him. Being that I go to pain management on a monthly basis, I hardly ever go to him. It will be interesting to see if he tries to blow off what I'm telling him, again. I surely won't leave without the referral ! Lol! Well see what tomorrow brings with him!

 
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Old 02-11-2013, 07:50 AM   #6
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Re: Chronic all over muscle pain, joint pain, fatigue and headaches

Good luck!
I am setting an appointment with a primary that specializes in internal medicine. Maybe I will have better luck with her.
I know my ex-primary kept blowing off my hypothyroidism. I recently found out that she has kept me on a dosage that is a starter point for someone over the age of 50 with heart issues.
35 years old and no heart issues - I also read that birth control pills bind with my hypothyroid medication (T4) and she recently prescribed that without increasing dosage. Also, a blood test to check the levels should be done every 2 - 4 months when first diagnosed. She checked once a year. My Free T4 was only 8% when it should be around 50 - 80-% No wonder I kept getting worse!

It has been a painfully rough and medically stressful three years, but I was very relieved that I failed the fibromyalgia tender point exam. I did get the Rheumy to let me try a new thyroid medication and am taking the old and the new. I still need to give it time, but am hopeful! I am hoping the internist will help me with this.

I am seriously going to be angry if it was my thyroid all along! I kept bringing that up to the primary and her response was, "Levels are fine"

Throbbing headaches, migraines, joint pain, exhaustion, light headed days, muscle cramps, stabbing pains, etc..
Tests: Electromyography(EMG), Nerve Conduction Study(NCS), MRI, Lots of Blood Tests, CT scan, laparoscopy surgery
Doctors: ENT, Neurologist, Oral Surgeon, Allergist, Gynocologist/surgeon, Rheumatologist, Eye Doctor

All for a search for an answer - things just kept getting worse.

I think someone owes me a refund for not just trying a higher T4 in the beginning.. lol
I am not implying that yours is all thyroid - I would have no idea. I guess what I am saying is that I wouldn't of found all this out without having a copy of all my bloodwork and some wonderful women on the thyroid disorder board!
I was initially here - and everyone was so helpful - so I am still lingering. How can so many doctors be so wrong?

I wish you the best!

 
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Old 02-11-2013, 08:44 AM   #7
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Re: Chronic all over muscle pain, joint pain, fatigue and headaches

When you see your Dr for the rheum referral, ask to get a copy of all your labs and test results while you are there. My guess is that he never tested you for anything specific, like ruling out lupus or rheumatoid arthritis. Probably just did the basics. Maybe not even a thyroid test (essential!). When you look at your lab results, you could post anything that is marked hi or low or looks borderline to you for feedback. There are many clues, and your symptoms sound like more than fibromyalgia. I hope your new Dr is more helpful and you find a good rheum who will seriously investigate what is wrong. 38 is not old and you shouldn't feel like this!

Last edited by ladybud; 02-11-2013 at 01:44 PM. Reason: left out a word

 
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Old 02-11-2013, 09:55 AM   #8
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Re: Chronic all over muscle pain, joint pain, fatigue and headaches

Thank you so much for the info that is not something I would have ever thought about. So I just left the doctors office and I want to cry to the made me feel like crap. I know in my initial post on here I said I'm going to be looking for a new doctor in this 1 just sealed the deal. Basically I was telling him how I feel, how I am so sore all over and my joints are very stiff and sore my both wrists in particular the past few months have been horrible. I told him I tried to write off some of my other pain initially thinking it was because of my back But that just can't be the case anymore. I tried to explain how my muscles even in my arms are so tender For no reason whatsoever. How all my joints are stiff and sore my wrists keep clicking these past few weeks How I have to adjust myself when I'm lying or sitting because even my shoulders and elbows get stiff. So he sitting in the chair with his leg crossed over so his ankle is on his other knee And I'm feeling like he's looking kind of smug. Even says to me how tall are you, so I say well they just measured me and I'm 5 foot 7. He then goes on to tell me how the past 7 years my weight has been a steady increase, something which I went to him a few years about because it started happening for no apparent reason. In fact I eat much much less now and don't have much of an appetite at all.... my weight gain started when I started taking all of this medicine for my back. So he then looks at me and says well it's like you're running around with my 10 year old hanging on your back no wonder you feel like crap. So I'm looking at him trying not to cry and then he says no wat my 10 year old doesn't even way I 100 pounds it's like you're running around with my 12 year old on your back. Now at this point I am completely mortified. For starters I am NOT 100 pounds overweight... yes I am overweight but I am 198 lbs and 5'7". So unless at that hide I'm supposed to be 100 pounds.... he doesn't do his math correctly. He then proceeds to ask me what I do for exercise. I remind him I really can't do much because I can't even get through the day half the time Just doing a normal day to day stuff. Even have the nerve to say to me.... well I think part of it is that you're really out of shape. So I say I know I'm at a shape and there's not really much I can do about it, I do the best I can. Even button just say no just saying you're out of shape is not enough if you were just out of shape that would be good For you but you're not you're worse then out of shape. If I could say that you were just out of shape that would be a good thing for you. He then I hold up his laptop in front of his face and chuckles and smiles and says don't throw anything at me I'm just stating the facts. I didn't think I could feel worse than I already do today... apparently I was mistaken. So he goes on to say... for the reasons I just gave is why I think you feel like garbage. I remind him how I came into him 5 years ago complaining of excessive fatigue.. so basically to placate me he will run the blood work. Even basically said if nothing shows up on the blood work then it will come down to the fact that I am overweight and out of shape. It was all I could do not to cry it out moment... I waited till I got my car. So I will be on the hunt for a new regular doctor While I'm trying to figure out what's wrong with me. I'm just stunned at the way he spoke to me... he seemed to think it was pretty funny thing it all with a bit of a smirk on his face. So what am I gonna do for the next 2 hours before 1 of my kids gets home from school and I have to go get the other 1... yes take a much needed nap. Uhhg

 
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Old 02-11-2013, 10:08 AM   #9
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Re: Chronic all over muscle pain, joint pain, fatigue and headaches

Sorry about a lot of the typos in the previous post...I was using the voice command to type it for me because I was driving. Needless to say, it says "even" a lot when it is supposed to say "he then" . That's only 1 thing among many typos! Sorry!

 
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Old 02-11-2013, 12:35 PM   #10
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Re: Chronic all over muscle pain, joint pain, fatigue and headaches

I read your last post in shock! Really mouth gaping open! I am so sorry.

I can relate to a physician being smug and rude. When my primary suggested that my problem was possibly endometriosis sitting on my bundle of nerves I tried her birth control route for a month. Became even worse!! I possibly thought endo could be it because my body felt like it shut down and went into complete severe pain mode a week before me period. Unlike my "normal" pain days.

Went to a gyno surgeon and had the laparoscopy surgery and weird as it was he actually found the endo and cauterized it. He told me though that it wasn't possible for it to be causing this over all pain. So, I went back to my primary and she said, I got the report and you don't have as much endo as my other patients. So, I don't know why you felt so bad!

Weight gain and fatigue is a sign of hypothyroidism. Left untreated or under treated it progressivley worsens. All your organs, muscles, tissues, and brain need that T4 and T3 from your thyroid! It is like the gas that makes the car go.

If you do get the results from a thyroid test keep in mind that just in the few years the lab ranges have changed. So, definataly post the results. My guess is that your doctor will only test the widely known TSH test. Hopefull you can get the full panel. And just because you fall into the lab ranges doesn't mean there is not a problem. Even higher TSH numbers in their range you can feel hypothyroid.

BTW The rheumy I saw suggested that I stop taking my thyroid medication because I wasn't that far out of range. Top of the lab was 3.0 and I was a 5.1. That comment scared me. But, at least he prescirbed me the Armour medication, at my request. That is what totally got me reading, asking the thyroid board questions and researching my lab values.

I am pulling for you! Good luck!

 
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Old 02-11-2013, 01:47 PM   #11
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Re: Chronic all over muscle pain, joint pain, fatigue and headaches

Thank you very much for the info and your encouragement. I left there today feeling absolutely horrible about myself. The blood work will be back in a few days. When I had initially gone to him for fatigue, he said my blood work was all fine...but I never did get a copy to look at myself. I'll be sure to get a copy of these and make sure what he has tested for. I sort of expected him to at least put a hand on me to see how much pressure it takes to make me hurt...something. Instead he just sat in the chair the whole time. Well, I will definitely be getting copies of all my stuff and I will be on the hunt for a new primary.somethings gotta give! Thanks again and I'll post anything I find out.

 
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Old 02-11-2013, 01:59 PM   #12
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Re: Chronic all over muscle pain, joint pain, fatigue and headaches

I am so sorry that you went thru that humiliation. He has no clue how to treat patients with compassion and respect, and use his brain and training to check out the facts instead of making judgmental assumptions! He will eat his words when your labs come back, and then you can give him your opinion before you leave and find another Dr. I hate to say it, but there is so much gender bias against women and dismissal of meaningful symptoms, it makes me irate. Don't think for a minute this is all because you weigh too much. That doesn't cause your wrists to hurt! Be sure to get copies of your results to take to your next Dr. I hope you get help soon.

 
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Old 02-11-2013, 03:15 PM   #13
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Re: Chronic all over muscle pain, joint pain, fatigue and headaches

Thanks for the support. Like i said, it was all I could do to keep myself from crying while in there. I was saying to him several times that these symptoms seem to have been building over the years. I reminded him about some sort of flare up that I bad 3 yrs ago..I was away when it happened. Over the course of the day my joints, starting with my thumbs then wrists, elbows, shoulders, hips, knees and ankles, became so painful that i literally couldnt move. I was in utter agony. I had blood work done and nothing showed up. I was devestated because I would have loved for there to be a reason. My luck, nothing will show up on the lab work.

 
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Old 02-11-2013, 05:14 PM   #14
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Re: Chronic all over muscle pain, joint pain, fatigue and headaches

Get a new doctor. Immediately. Nobody should be treated with such disrespect by their physician. (hugs)
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Old 02-11-2013, 07:41 PM   #15
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Re: Chronic all over muscle pain, joint pain, fatigue and headaches

Thank you...glad to know I didn't over react because my feelings got hurt, because I felt insulted. Yes, I definitely will be finding a new dr. It really had me so upset. Nothing like adding more stress to an already stressful situation.

 
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