Welcome to our Pain Management Community. I am so sorry to hear about your undiagnosed pain. My heart goes out to you.
The description of your pain sounds very similar to mine when it first began. I went over ten years without a DX (Diagnosis). Unfortunately by the time it was DX by an astute D.O. the permanent damage was done. I'm wondering if your medical providers have considered and r/o (ruled out) a condition called SIJD (Sacroiliac Joint Dysfunction)?
I am not saying you have SIJD, only a skilled medical professional can DX you. I do encourage you to consider the possibility and bring it to the attention of your provider.
Two recent studies have demonstrated that there probably isn’t one perfect SI joint diagnostic test that can be performed to definitively diagnose SI joint pain or dysfunction. Basically, there is no “gold standard.” SIJD is often difficult to diagnose - but should always be considered when the usual and customary culprits are r/o.
Often SIJD first presents as low back pain. It can also cause pain in your hips, buttocks, thighs, or groin. Sciatica is often a SX (symptoms) of SIJD. If you can point to an exact location of pain in your gluteal region it's a good indicator that it's due to your SI Joint. However this is usually not seen until the condition progresses. Sitting, standing, driving are often the most painful activities. Pain increases with activity - or as you say - as the day progresses. Often by supper time I would be in agonizing pain - sometimes unable to even function - and in agony most of the nite. Does that sound like you?
I could go into more details - and will do so if you request it. If you search SIJD you will find more information. Some of that information I do not view as correct - or realistic. Look at who is writing the article - or providing the information. Many TX (treatments) are just a shot in the dark - and have do not have statistical facts to support their effectiveness. Many Practitioners just don't know this condition well or how to treat it. You need someone that has good knowledge and experience in treating SIJD.
As I've said, SIJD is very difficult to DX and many ppl suffer for years without a DX. We're told there is nothing wrong with us - or worse yet we're making it up. Like anyone would like to make something like this up!!
Again I am not telling you that you have SIJD, I'm just suggesting that you educate yourself on this over-looked and under diagnosed condition. If the SX fit than present the possibility to your medical provider. Be assertive and insist on answers. This condition has plagued me for over 20 years. If you need more information - or have more questions please feel free to ask.
Our members may have other suggestions for you. Please keep in touch my friend in pain.
Take Care of Yourself,
Thanks Tuck for the information. From last 2-3 days I have severe leg pain.Worst in thighs.When I get up in the morning, foot along with legs are paining :( gradually I feel better as I started walking. Anybody have such type of condition. Thanks.
Severe bilateral thigh pain is not a usual SX of SIJD. Lateral thigh pain is more common in SIJD. Often you can palpate small lumps and bumps in the thigh that are very tender to touch. Do you have those SX?
Ambulation can ease the pain of SIJD - and correct activity - maybe such as the relief you found with PT. Can you describe your pain? Please be more specific. Is this an aching, throbbing, burning or shooting pain? Does only activity make it better - and only rest make it worse? If that's the case than muscle or soft tissue does make sense - but why and what?
So if we r/o SIJD what's left? Probably the things you have been tested for - but maybe not. Have conditions like Lupus, Lyme's Disease and similar inflammatory conditions been r/o? Labs may need to be redone. Lyme's can be difficult to DX and certain tests are more accurate than others - the more accurate ones are more expensive and often still need to be repeated to "catch" it.
I hate to say the dreaded word Fibromyalgia which is a disorder characterized by widespread musculoskeletal pain. This can begin in one portion of your body and move on to other areas in time. Though there is no doubt that this is a very painful and real condition - sadly can be a catch-all when a physician cannot easily find a cause of a patient's pain. The key word here is, easily. I know ppl that have had this DX and later found they were misdiagnosed - often when they had a different difficult to DX condition.
Intestinal problems can cause bilateral leg pain. Do you have any GI SX?
The difficult part is that pain in the legs can occur for so many reason. It may be the result of conditions that affect bones, joints, muscles, tendons, ligaments, blood vessels, nerves, or skin. When you have such a wide variety of potential causes it requires a dedicated and astute practitioner to come up with the right DX.
You are so young to deal with chronic pain that effects your functioning. I encourage you to be assertive and find a practitioner that can help you. Don't take, "I don't know" for an answer. No one cares about your body as much as you do. You are your own best Health Care Advocate. Have you consulted a Rheumatologist - a Neurologist - an Internal Medicine Physician - or a D.O (Doctor of Osteopathy)?
I'll look forward to hearing more from you. I am so sorry that you are dealing with this painful and complex situation. Hang in there - you'll find answers - be persistent. Keep in touch - and if you can please describe your pain.
Take Good Care of Yourself,
I had an excellent therapist at rehab. one day she said I want to find where your pain is coming from and I want to try to palpate. she pressed very deliberately and carefully in the area of the SI joint asking me to report on the amount of pain. like radar she zeroed in and finally got to a kind of nodule of tissue that was like the pain button press yeow!!!
I think the physical therapy I have had has succeeded in strengthening that area in my case now it is one of her was wrong before I had that SI joint dysfunction. when I got really sick and made I fell 3 times in a 24-hour period and landed on that area. falls were mild that is to say from a standing position going about 30 inches and landing on my posterior but time for me to start a new subject
Thank you all for your quick replies and also thanks for understanding my pain. 2-3 days back when I had severe leg pain I found small red brown colored patch on my skin on left calf muscle.As leg pain eases while walking. Is it related to blood circulation. ?
When I visited doctor he is also not sure what causing this.but he told there is no neurological problem. He suggested will do some blood tests for arthritis if same type of patches come more in feature. Is patch or skin color change is related to arthritis. am facing much pain and unable to sleep properly at night. pls suggest your opinions.
Thanks a lot.
I forgot to mention some points:
-The bottom of my feet could be ice cold and the calf, thighs will be burning. You can actually feel the difference in temp. when you touch them.
- currently I am taking neurotransmitter "blocker" sortof. but when I stop medicine pain starts again.
Did this red brown patch have a bulls-eye around it? It's late in the season for a Tick Bite - but I certainly would want Lyme's Disease ruled out. Again there are several blood tests, some more accurate than others to DX this disease. Having one Negative results does not mean that you are free from the disease. It can take several tests to determine Lyme's.
I do hope you'll request a referral to a Rheumatologist. I don't think the red brown patch was related to Arthritis in the usual definition of the disease. It may be related to an Inflammatory Process that I am not familiar with - but it could also be a mere coincidence.
When we think of Arthritis we think of RA (Rheumatoid Arthritis) or Osteoarthritis - but there are actually over 100 different types of Arthritis. It takes a Rheumatologist to sort through symptoms and come up with the right DX - if you have some form of the Disease.
The "blood tests" your physician talked about does not r/o (rule out) - or rule in all forms of Arthritis. He's probably looking for Inflammatory Markers.
Peripheral vascular disease, also called PVD, includes a group of diseases that cause a narrowing of the blood vessels that are outside of the brain and heart. I assume this has been r/o.
I'm not certain cold feet are relative but it may indicate a circulatory problem such as PVD. My husband has had ice cold feet (mostly in cool weather) since his 20s. He does not have PVD. That said, all things should be considered until a DX is found.
If your PCP concludes his diagnostic evaluation and cannot DX your SX than please consult the specialists.
I hope something I have offered has been helpful.
Thanks for your advise. patch doesn't have bulls eye around it. day by day patch size got reduced. and after a week it gone completely :) meanwhile physician asked me to take opinion of neuro.so visited neuro physician. He was saying that it might be scitica as my left leg hurts more than right. Also he was saying all the pain is because of anxiety and prescribed me anti-drepressent, calcium, d-3 and muscle relaxant tablets. I am feeling better after taking this but proper dignose is still not done.Also, could you pls give more information about scitica.Your help is appreciated. Thank you and take care.