Chronic pain, no diagnosis

Hi, I'm new to this forum.

For the last few years, I have various pains on one side of the body, throbbing, aching and dull, from head to toe. The most annoying pain is all around the pelvis, ie, hip, groin and testicles. The pain worsens when I'm under pressure, or depressed. Keep getting lot of muscle spams for several years. None of the tests taken revealed anything, and the doctors were unable to diagnose, except one which showed very less Vitamin D.

Do I have fibro? Can fibro cause pain in sensitive places in men (in the pelvic region)?
Can the extremely severe Vitamin D deficiency can be related to fibro?

Thanks

Hey David5010 Welcome.

Fibro can pop in anywhere it wants! That's the fun of it. ..... for the fibro not us of course. You mentioned Doctors, we're they regular MD's or have you seen a Board certified rheumatologist? Usually after blood drawls and if needed xrays come back normal and other causes have been ruled out a diagnosis of fibro is usually made.

I have pain typically anywhere and everywhere. The groin testicle pain I haven't however another male whom use to frequent here did. So yes it could be Fibro but of course we can't tell you that for sure cause we aren't doctors. Have you read fibro 101? It's the first thread and is full of great information. Remember, getting a diagnosis of fibro is just simply that, getting a name for it. It's really up to us to find a great Dr. To help with meds that will dull the pain if possible and then the rest is on the patient to come up with a home plan. Home plan can be supplements, proper sleep, pacing ourselves, diet EXERCISE, RELAXATION TECHNIQUES and probably most important a Positive attitude.

If other things need addressed such as anxiety and or depression then get those taken care of as well. They make fibro pain worse and then the increase in pain makes them worse till you're caught in the vortex. Find a way to step out of the vortex. You can have a good life with fibro. I still do many many things despite this ridiculous condition. It's like a sleeping Dragon. We try not to step on his tail (stress over doing laying around etc.) These things wake the Dragon and he breathes his fiery rath.

I do hope you stick around. Keep posting it helps!

Thanks to everyone for your response. My Vit D is extremely low, approximately around 11 ng/ml.

Severe Vit D deficiency (for many years unnoticed) = Increased chronic, Fibromyalgia pain.
Fibro = causing unexplained constant pain in pelvic, genital region.

All these years, I was thinking only women are more likely to get fibro. I'm also having constant severe aching in both shoulders, which worsens during night.

Besides throbbing, dull aching pain, sometimes I have tenderness as well. Can fibro cause tenderness to touch? I feel something like inflammed inside, but scans, MRIs, blood tests, urine tests, culture tests revealed nothing.

Hi, David, and welcome! It sure sounds like you could have fibro but your doctor has to rule out other illnesses just to make sure. There is no good test for fibro and we share many of the same symptoms with other illnesses.

Yes, fibro seems to hit women more but maybe more men have this but won't admit it and go for help. We are finding more men showing up on this forum now and, as you can see, we have a male mod, too. I'm glad you are getting help and searching. You are one of the smart men! Once you learn what helps control your pain, you will have a full and enjoyable life in spite of this illness. I know I sure have!

I was having raw nerve pain that started at the groin and ran down my legs but it was caused from my spine (ankylosing spondylitis) and something called sacroiliitis. But ibuprofen and a muscle relaxer took care of that problem for me. The muscle relaxer made a significant difference in my pain. I'm so much better now. I was blaming all of this on my fibro but not everything is caused by fibro. I think when you have chronic pain, it can affect any part of the body. Everything is connected.

I, too, was low in vitamin D3. I now take 5,500 IU of D3 a day and am better, too. My levels are now a little over 50! I may be backing off some of the D3 if I continue to go higher. I feel good at this level. I also use magnesium malate. This helps with pain and fatigue, too.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. Good starting links are Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. You just might see yourself there. You will find links about vitamin D and also magnesium malate there and how they work in your body. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

Good Morning. This is one of the rare forums where I'm seeing the moderators are coming and giving in-depth details. Thanks for your comments. Yes, I went through the Fibro 101.

My physician prescribed me some shots on Cholecalciferol (D3), right now I'm on 3rd week for 300,00 IU. However, not seeing any changes. I still continue to feel the pain here and there. Any idea how long it takes to see some relief from pain?

To add on to my history, years back I lived in the eastern sea board, somewhere in upstate NY, with not much sunshine, dull and extreme cold weather with overcast skies. Even know the place I live is in higher altitude, with overcast skies throughout the year. I think that is one of the main reason for the Vit-D deficiency.

Recently I was tested for Reactive Arthritis and a HLA B27 blood test for Autoimmune disorder, both the results came as negative.

When I sit and think, I had all these pains mild and constant for years, however, not sure what exactly triggered, eventually amplifying the pains, or increasing the pain sensitivity. Can any PTSD trigger fibro?

Thanks.

The pelvic pain is called pelvic floor muscle tension - causes frequent urination, false bladder infections, pain extending to the rectum penile and vulva pain and much more.

Read the book: Headache in the Pelvis

NextAdventure,

Yes, I have this Headache in Pelvis book. However, no luck with those trigger point therapies.
I guess they conduct some trainings on this wise-anderson protocol training somewhere in California.

Thinking about reading "Hope and Help your Nerves" by Claire Weekes to calm down the nerves. Yet to find time.

I also heard about Tension Myositis Syndrome, Somatization, etc. Are these synonymous to Fibromyalgia?
The pain worsens due to tension, anxiety, temperature, light, depression, etc?

David

Yes those conditions are synonymous.

The book gives you the reason for the condition - I found that the therapies did not work for me. I had to do muscle retraining and whole body CNS relaxation.

Dr. Weekes book is good but not comprehensive enough to retrain the CNS. It is mostly for panic

That you don't have time is diagnostic!!!

it helps when you get closer to your optimum vitamin D level. You say you are extremely low. Do be patient. I wish there was a quick fix and we just needed to take a few pills to start feeling the effects. That didn't happen with me but I continued taking them since I knew my body needed more vitamin D. I did't get the shots. When I started out, my levels were at 13.

Here is a link that says about the same thing.

http://www.livestrong.com/article/532981-how-long-does-it-take-to-feel-the-effects-of-vitamin-d-supplements/

Sherrine

Hi david , my d was only 19 ...and believe me caused horrible symptoms..so hard to imagine what you have been through...it takes a good while for this to sort itsself out..but some improvements came for me within weeks...but they said i will have the symptoms for a good while...

Hang in there...

Hello David,

I have been on Tramadol for YRS. I believe 12, I take 100mgs 2x a day. It takes the edge off somewhat, but I still have pain everyday. It is hard to not focus on the pain I know, but you are going to have to dig deep and try to find ways to distract yourself from the pain. You mentioned emotional stress. I am not sure if you mean from the pain or if you have some other life issues going on that is causing you stress. Stress is probably one of the biggest reasons for an increase in fibro pain.

IF it is stress brought on by life issues, then can you eliminate or reduce this stress? If it is stress brought on by pain, then basically it is being brought on by negative thoughts about your pain. While you are working with docs to find the right meds you may want to ask for something temporary to help with anxiety and worry. if you can get your anxiety levels down and think clearly through medication or possibly talking to a therapist then you will also do better with your pain. You are going to have to approach this from many different ways.

You mentioned something very important and perhaps one of the most challenging time for many. MORNINGS,
Yes as soon as your eyes pop open your brain starts processing. It goes off and starts checking, Yep My legs hurt, yep my hips, yep my back oh great my arms hurt really bad today, this is going to be an awful terrible miserable pain filled day, I cant stand this, I am always going to be this bad and never feel better. What if nothing helps, what if it is something they are missing on tests? what if I get even worse than this, Can I?
STOP. this is where you have a choice , you can keep filling yourself with negative scary self talk or you can choose to talk to yourself in a positive encouraging way, just like you would a good friend whom was feeling the way you are. Try telling yourself. Ok, I hurt but thats ok, I dont like it but I can deal, besides I am actively working on getting better. Whenever you find yourself focusing on the pain and obsessing over it, that is when you need to get busy and distract yourself. Sing, lose yourself in a funny movie or a good book, take a walk, stretch your muscles, visit or call someone. You will find things that help you feel better David, keep searching, do not take No as an answer from doctors. Remember the goal is not to be pain free, instead think highly manageable.

Take care, keep us in the loop.

Hi Michael1968,

Heard from someone saying, there will be some heightened pain sensitivity while taking the Vit-D shots, sign of reaction. He was also telling that even once the Vit-D reaches the optimum level, it normally takes 6 months to 1 year to see the effect, and see improvement. I'm not sure whether what he is saying is correct.
Right now the pain is little more. I'm going to wait patiently and see how things change.

Ljm2014,
I live in a place covered overcast skies most of the year.. dull, cloudy and less temperature.

Post Edited (David5010) : 8/7/2014 8:49:18 AM (GMT-6)

I have the same symptoms! wow i love this forums. support groups have helped me lately, because i had a hard time accepting what has happened to me . I am not diagnosed as fibromialga. My doc said there is no real solid test that can confirm. they had a twelve point test that is often not accepted anymore because is so different from one person to the next. But finally I read your thread and almost exactly like me. I get these weird right side rib pains too suddenly. those rib and testicle pain freaked me out cuz of cancer and stuff. but i am clear. my bloodwork shows no deficiencies. but the pain is really real. I regret letting the pain center give me an spinal epideral on my ulnar nerve connection (c4 i think) because now i get pain at the injection point once in a while. ( fibro does whatever it wants when it wants) I will definately not get an epidural on my lower back for the leg and pelvic pain.
One thing for sure- the pain has brought me closer to God thru prayer and meditation. I once went to ER for the pain because it was so extreme- and came with nasuea and crazy blood pressure and heart beat. i was panicking. I heard the nurse tell the doc that she thought I was just a drug seeker- not to give me any drugs. My world was crumbling around me. and I remembered to pray- forgiving that nurse for she did not know- could not know, and then meditated. It was all I had. for the first time i focused my breathing, visualized the pain as my nerves just branching out and absorbing positive, painful but healing energy. My heart monitor regulated with my breathing pattern- and I fell asleep. they sure drug tested me for everything. total of $2000 of tests, all clean ( I didn't any take narcotic pain killers at the time) and a 200 dollar bill for naproxin and an antacid of some sort.
thats when I learned that i need to pray and meditate as often as I can- especially when pain attacks. It is difficult- but it can be done.