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Pain in lower body
I have had pain my hips, tailbone, and left butt cheek for a few years now. The doctors would usually just tell me its connected to my Neurofibromatosis and send me on my way. Recently it has gotten worse and making it very hard to sleep or sit. The current doctor I am seeing has done x-rays on my hip that came back normal. He sent to me see a rheumatoidologist (sorry about the spelling) and he says I do not have arthritis. I am at a loss he wont send me for any other testing to see if maybe tumors are growing. Any ideas on what else it could be? I have never had injury to my back or lower body. I have had kids I don't know if that would affect anything. Any ideas and help would be great.
You are so welcome I am glad I could be of assistance.
SIJD can begin with pregnancy. If you goggle it you will learn a lot about this condition, most of it is correct. When I was finally DX with it 7-8 years ago there was not the information there is now on the internet.
My husband also spent hours massaging my areas of pain. We seem to have some things in common. :o)
I have a medical background yet if someone would have told me ten years ago the importance of maintaining good body alignment I would have highly doubted it. Now I understand the rationale. My SIJ pain is effected greatly by the alignment of the pelvic girdle....as that is the location of your SIJ. If you have discrepancies in the length of your legs that can always play a part in the SIJ. SIJs can be hyper or hypo-mobile....that's what usually caused the pain.
If I sit cross legged on the floor it will sometimes ease the SIJ pain. I also use the large Thermacare pads across my upper gluteal area, that helps a bit sometimes too. It's been a trial and error process. Heat, warm baths or showers and massage often bring the pain down for at least short periods. However nothing truly relieved the pain to any degree until I was placed on a regime of pain management medications and received OMT every 2-3 weeks....and ceased my career. However I am an extreme case and had I been DX when this was first an issue I may not be untreatable. That is why I urge you to find out if you have SIJD. The sooner you treat it the better the outcome. It doesn't have to be disabling.
Again I cannot DX you. There are other conditions that can cause the type of pain you describe but it seems they have ruled out most of them. I will be very interested in hearing the outcome of your appointment. Heads-up, a neurologist told me that no one, especially a D.O. could DX, SIJD. It was at that time that my PCP (the D.O.) and I decided to have the only definitive test for the condition, SIJ injection. Obviously it confirmed the DX.
If you have this condition I urge you to do a lot of research before you agree to any invasive procedures. I won't go into details at this point but be cautious. I hope to hear from you again soon and will be very interested to know if you have SIJD. I'd be glad to share the information I have learned over the years with you. Sorry I've babbled enough!
Best of Luck,
~Tuck
SIJD can begin with pregnancy. If you goggle it you will learn a lot about this condition, most of it is correct. When I was finally DX with it 7-8 years ago there was not the information there is now on the internet.
My husband also spent hours massaging my areas of pain. We seem to have some things in common. :o)
I have a medical background yet if someone would have told me ten years ago the importance of maintaining good body alignment I would have highly doubted it. Now I understand the rationale. My SIJ pain is effected greatly by the alignment of the pelvic girdle....as that is the location of your SIJ. If you have discrepancies in the length of your legs that can always play a part in the SIJ. SIJs can be hyper or hypo-mobile....that's what usually caused the pain.
If I sit cross legged on the floor it will sometimes ease the SIJ pain. I also use the large Thermacare pads across my upper gluteal area, that helps a bit sometimes too. It's been a trial and error process. Heat, warm baths or showers and massage often bring the pain down for at least short periods. However nothing truly relieved the pain to any degree until I was placed on a regime of pain management medications and received OMT every 2-3 weeks....and ceased my career. However I am an extreme case and had I been DX when this was first an issue I may not be untreatable. That is why I urge you to find out if you have SIJD. The sooner you treat it the better the outcome. It doesn't have to be disabling.
Again I cannot DX you. There are other conditions that can cause the type of pain you describe but it seems they have ruled out most of them. I will be very interested in hearing the outcome of your appointment. Heads-up, a neurologist told me that no one, especially a D.O. could DX, SIJD. It was at that time that my PCP (the D.O.) and I decided to have the only definitive test for the condition, SIJ injection. Obviously it confirmed the DX.
If you have this condition I urge you to do a lot of research before you agree to any invasive procedures. I won't go into details at this point but be cautious. I hope to hear from you again soon and will be very interested to know if you have SIJD. I'd be glad to share the information I have learned over the years with you. Sorry I've babbled enough!
Best of Luck,
~Tuck
Thank you so much, I will call the doctor near my town and see if he takes my insurance and set up an appointment, I read what you wrote to my husband and he said that fits because the pain goes down my leg he spends hours rubbing my lower back, hip and knee and nothing seems to make it better. He and I both thank you
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Welcome to MedHelp's Pain Management Forum. I am glad that you found us and took the time to post.
I had/have similar pain that no medical practitioner could diagnose (DX). Finally after years and the pain becoming increasingly severe I stumbled on a D.O. (Doctor of Osteopathy) that diagnosed me after one examination.
I have SIJD (Sacroiliac Joint Dysfunction). Since the initial DX I underwent testing to confirm it. I encourage you to consult a D.O. that does OMT (Osteopathic Manipulation Therapy). My D.O also specializes in Internal Medicine. Obviously I cannot DX you but it's worth consideration. SIJD is often over looked and it one of the most under diagnosed of all conditions.
The sooner SIJD is diagnosed and treated the better the outcome. If left untreated it often becomes chronic and can be disabling. The sacroiliac joint or SIJ is the small "joint" in the pelvis between the sacrum and the ilium of the pelvis, which is joined together by strong supportive ligaments.
Pain from SIJD is primarily in the area of the SIJ (buttocks) and low back. When it becomes extreme or severe it often refers into the hip, groin, knee and into the posterior and lateral portion of your leg. For some ppl it can even radiate below the knee but this is more rare.
Again I cannot DX you but in my opinion SIJD should be considered...your PCP may not even be willing to take this into consideration and that is why I encourage you to consult a D.O. Please let us know how you are doing and what results you have from your consults.
I'll be interested in hearing from you. Best of luck!
Today, in memory of my father I am signing....
Still Mel's Daughter,
~Tuck