Internal Pain - Doctors unable to Diagnose

Posted by jewel2019 @jewel2019, Feb 1, 2019

Hello all,

I am writing here today because I have a medical problem that is extremely painful for me that doctors have not yet been able to diagnose. I am hopeful that someone here with similar symptoms can recommend to me some additional testing that would help to identify the problem. Any advice would be greatly appreciated because this is really becoming unbearable for me. I am a female, 30 years of age with no prior serious medical issues.

My pain started near the end of October, 2018. I hadn’t been doing anything out of the ordinary but one evening I started to feel internal pain deep inside my back starting from my lower spine (sacrum) downward to my tailbone, and spreading deep in my buttocks (primarily the left one).

My buttocks in general is extremely sensitive. Physically pushing up on my buttocks causes the pain to increase greatly, and even just a light touch to the skin when i lay on the side and i touch over the skin I feel a pins and needles sensation and almost like a burning feeling.

In the beginning the pain would only disappear when I would lay down (on my back or side) in bed. It was impossible for me to sit straight on a chair due to the stabbing pain that I feel internally. I felt like I needed to keep my body straight all time, feeling the need to put a hand on something to help keep myself standing straight to avoid the pain. I can’t wear tight pants or anything that puts pressure on my buttocks. Even underwear is an issue.

In addition to the pain I have some other symptoms as well. I have begun to feel very weak, tired, and my muscles, bones, and joints hurt. It is becoming harder to use my hands and my arms feel heavy. My fingers feels clumsy and it’s hard to keep things in my hands. It’s becoming more difficult to walk normal because of the pain and I feel like I am losing coordination of my body.

I feel thirsty all the time, and I have a tingling sensation as well as shaking in both feet. They are also always cold. All of this is having an effect on my sleep and it is hard for me to get comfortable in bed.

While at the beginning the pain in my lower back / buttocks was intermittent, now it is constant. When I sleep I feel like there is something pulsing inside me. Any touch to my skin triggers a sharp pain in my left buttock.

My stool has changed as well - sometimes it is extremely dry and hard, while other times it is normal. I recently has a mucus discharge from my rectum as well, but this was a one time occurence. When I need to use the washroom the pain is greater.

Finally, this past month my menstruation came 5 days earlier than normal and has never stopped for 3 weeks now, although there is less blood than my usual cycle.

I have been to see about 10 different doctors now and have been through a multitude of tests as follows:
- Ultrasound of abdomen - doctor said she thought she saw a perianal abscess and recommended an MRI to confirm
- Pelvis MRI - nothing observed out of the ordinary
- Cocco-femoral and sacrum MRI - nothing observed out of the ordinary
- Lumbar MRI - nothing observed out of the ordinary
- Several blood tests - blood is normal except for slightly high cholesterol
- Rectosigmoidoscopy - Normal
- No sign of hemorrhoids, no visual issues with my anus
- Normal blood pressure, normal heart rate
- Gynecologist exam - Told me the menstruation issue is not related and can sometimes happen due to a hormone irregularity

The symptoms seem to me like this is a problem with my nerves or some sort of infection in my intestines but the MRIs and other tests don’t show any inflammation there. The doctors are telling me that based on the test results and scans that I am just fine, but I am most certainly not.

Does anyone here have a similar problem as me and if so can you please let me know what tests you did so that I can request my doctor to have them done? I really need to solve this - it is really becoming unbearable.

Thank you so much for your help.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Jewel2019 Do you think this is sciatica pain ! With a burning sensation yes it does sound like your sciatica nerve is involved Since you,he hard all the testing and all is normal Is like to suggest a chiropractor maybe able to help you .When my sciatica hurts like this I go see my chiropractor and get relief ,you may want to try this

REPLY
@lioness

Jewel2019 Do you think this is sciatica pain ! With a burning sensation yes it does sound like your sciatica nerve is involved Since you,he hard all the testing and all is normal Is like to suggest a chiropractor maybe able to help you .When my sciatica hurts like this I go see my chiropractor and get relief ,you may want to try this

Jump to this post

Hi lioness, thank you for the suggestion. No, I have not tried a chiropractor yet but I will give that a try. When you go to the chiripractor what exactly does he/she do to fix it? Is it because your spine is putting pressure on the nerve or something like that?

REPLY
@jewel2019

Hi lioness, thank you for the suggestion. No, I have not tried a chiropractor yet but I will give that a try. When you go to the chiripractor what exactly does he/she do to fix it? Is it because your spine is putting pressure on the nerve or something like that?

Jump to this post

@jewell2019 First after you tell him.where it hurts mine has me lay face down puts like a Tens unit pads they are small on certain areas where it hurts and a little bit of electrical current startes to relax the muscles after he pushes on the muscles to relax the nerve and muscle that's where you hear the popping its not the bone cracking as a lot of people think.When my sciatica is involved this helps me Best of luck

REPLY

My comments below is mainly for Jewel2019 comments above. Everything you have described I have also have and I have gone to many doctors, one doctor just sends me to another doctors. The main difference between you and I is I am a male and I am 76 years old. This has started with me about Sept. 2019 and still continues today. The last doctor I had says that I have levator spasm, levator syndrome, and puborectalis syndrome, mainly levator spasm, levator syndrome. What they recommended for me is Epidural Injections in my lower back for a series of three times. I had the first one about two weeks ago and the pain is still there. I am supposed to have the second series of injections in a week. They say you can only have these injections 3 times in a 6 month period.. The only relief I get is when I lay down. Also, when I put a heating pad on my butt near the rectum it seems to help. Other then that it hurts all the time. I thought I would share with you how I am handling my situation, however everything that I do doesn’t seem to stop the pain all together. If you have tried something other then what I have mentioned and it’s helping you please let me know. Thanks, Stephen

REPLY
@jewel2019

Hi lioness, thank you for the suggestion. No, I have not tried a chiropractor yet but I will give that a try. When you go to the chiripractor what exactly does he/she do to fix it? Is it because your spine is putting pressure on the nerve or something like that?

Jump to this post

@jewel2019 A chiropractor moves the muscles so the nerves will be free the tight muscles are the problem The Dr. puts a Tens unit on first with ice or heat which which ever you prefer for 10 min. to relax the muscles then adjust the muscles nerves to let them relax whatever is your cause . It doesn't hurt I go all the times to keep thing in order .

REPLY

Has Mayo evaluated you to see if you have Central Sensitization Syndrome, or Chronic Pain Syndrome?

REPLY

You need to see Peripheral Nerve Specialist from Dellon Institute. Your symptoms suggest multiple nerve entrapments which is usually the cause of chronic pain ultimately leading to changes in muscle tone and many other problems that result down the line. They are expensive, but you will have much more insight into your problems. Pain management generally is not in the business of diagnosing peripheral nerve problems. They will drug you and send you to psychiatrist/psychologist which will help, but again is limited.

REPLY

Most of what you're saying I to experience. However, I had severe osteoarthritis in my hips. And now it's in my buttocks. I can't sit. Feels like I'm sitting on a mountain. They too have ran many tests and they can't diagnose me. It's just ridiculous. I pray you feel better. Keep fighting. Keep pushing. You are your own advocate.

REPLY
@sc4880dc

My comments below is mainly for Jewel2019 comments above. Everything you have described I have also have and I have gone to many doctors, one doctor just sends me to another doctors. The main difference between you and I is I am a male and I am 76 years old. This has started with me about Sept. 2019 and still continues today. The last doctor I had says that I have levator spasm, levator syndrome, and puborectalis syndrome, mainly levator spasm, levator syndrome. What they recommended for me is Epidural Injections in my lower back for a series of three times. I had the first one about two weeks ago and the pain is still there. I am supposed to have the second series of injections in a week. They say you can only have these injections 3 times in a 6 month period.. The only relief I get is when I lay down. Also, when I put a heating pad on my butt near the rectum it seems to help. Other then that it hurts all the time. I thought I would share with you how I am handling my situation, however everything that I do doesn’t seem to stop the pain all together. If you have tried something other then what I have mentioned and it’s helping you please let me know. Thanks, Stephen

Jump to this post

I can't even sit anymore. It's just terrible but I'm going so hard to be strong. My muscles in my bottom are so swollen but nothing huge showing on mri. It shows inflammation but they don't know why. I just started prednisone so I pray it helps. Good luck to you sir. Keep holding onto God's promises.

REPLY
Please sign in or register to post a reply.