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Any Suggestions?
How do you know what type of doctor to see? I have been to x2 Ortho, x2 Pain Management, Chiropractor, Rheumotologist and family doctor. I am going to see a Holistis doctor today. I am wanting to get a referral for my insurance to go out of network to another state or a large specialized medical center down south in my state. But, I don't know what kind of doctor to see if I only get 1 shot with my insurance to have a consultation out of network. I definitely have the back issues (DDD, bulge disc, pars defect and Spondy), ankle/foot issues (torn peroneal tendon w/subluxation, heal spurs on both, achillis tendonities - had surgery to fix 07/2009. Now, edema, possible start of a stress fracture, bursitis in the knee and not walking right due to the pain) and then I have the "all over my body" bruised feeling, aching and sore which they think could be Fibro. With all this......does anyone have any suggestions what type of doctor could cover all this?
Just an update. I was finally able to go to Cleveland Clinic last Friday. After weeks of going back and forth with my insurance company to get the consultation covered, they still denied and I went anyways. I came back with no answers, once again. Many Drs keep telling me what they see in my MRI's is what they would see in many peoples MRI's and they do not have pain. So, in otherwards, no one can figure out why I am having so much pain with what my MRI looks like. There is a bulge and they have suggested getting a IDET (disc decompression) done. But, stated many insurance carriers do not cover this. Has anyone had this before and if so, did it help?
Hi,
I feel your frustration. Most of us here can relate very well to how difficult it is to deal with chronic pain. No one is ever going to understand exactly what you're going through - it just isn't possible. We all tend to think of others as existing in a world that is like ours, or at least similar to ours. If your family members, friends, or even doctors haven't dealt with it themselves, it is just too difficult to relate to.
It seems to me that many of your issues are tied in together with your (perhaps congenital) spinal issues. When the "pars" section of the vertebrae (the pointy part) breaks away, or is not there (sufficiently), the vertebrae are allowed to slip forward, which also allows the disc space to narrow (stenosis) and the discs to wear away (DDD), which all ends up impinging on the nerves, causing pain to radiate down your body from the point of injury (or disease), (radiculopathy).
So, having been born (it would seem from the Dr.'s comments) with the spinal defect with the pars portion of the vertebrae, all the other problems developed from there. Having a similar weakness in the bony architecture of your ankles, you also developed later tendon damage and pain there.
Once your body is thrown off balance in these ways, pain can and WILL appear in many other places. I will reiterate my opinion that Orthopedic specialists would be the most beneficial, but Physical Therapists and Rehabilitation Specialists would be of benefit too. Tuck knows how horrible chronic back pain (and other Musculo-skeletal pain) can be, as do I, and it usually isn't anything you're going to cure, but you should be able to obtain some relief. I have a back brace - several actually - but one that is very "beefy" and helps when standing - but makes sitting a problem. There's no great solution for the miracle that is our back! It needs to hold us erect, and yet allow us to bend, so it's quite a conundrum! Sometimes my sacroiliitis is enough to make me cry! I've had so many injections and types of therapy - I can't count. Nothing has helped much. I have involvement in my Cervical, Thoracic, Lumbar, and Sacral Vertebrae. I have always been an "over- achiever" - lol.
Keeping your muscles strong is the best thing - it helps hold you together!!! Unfortunately, due to the nature of so many of my serious systemic illnesses, I am bed-ridden too much of the time on oxygen etc.
Keep going to the best of your ability, and continue with your head held high - you know how you feel - no one else does. Remember too, that doctors can only treat conditions that they can understand as well. We have to do our best to describe our symptoms and keep at it until you feel understood. I have found it amazing how much pain I tolerate now, compared to years ago. Sometimes we just have to develop a tolerance to a bearable amount of pain. Some days I feel that I just can't take it anymore - but with God's grace - I do. I no longer look to others to validate my pain nor my reality - they can't and they don't. My doctors and family do though. But that's why sites like this are so important. You need the support from other chronic pain sufferers.
Take care, Jan
I feel your frustration. Most of us here can relate very well to how difficult it is to deal with chronic pain. No one is ever going to understand exactly what you're going through - it just isn't possible. We all tend to think of others as existing in a world that is like ours, or at least similar to ours. If your family members, friends, or even doctors haven't dealt with it themselves, it is just too difficult to relate to.
It seems to me that many of your issues are tied in together with your (perhaps congenital) spinal issues. When the "pars" section of the vertebrae (the pointy part) breaks away, or is not there (sufficiently), the vertebrae are allowed to slip forward, which also allows the disc space to narrow (stenosis) and the discs to wear away (DDD), which all ends up impinging on the nerves, causing pain to radiate down your body from the point of injury (or disease), (radiculopathy).
So, having been born (it would seem from the Dr.'s comments) with the spinal defect with the pars portion of the vertebrae, all the other problems developed from there. Having a similar weakness in the bony architecture of your ankles, you also developed later tendon damage and pain there.
Once your body is thrown off balance in these ways, pain can and WILL appear in many other places. I will reiterate my opinion that Orthopedic specialists would be the most beneficial, but Physical Therapists and Rehabilitation Specialists would be of benefit too. Tuck knows how horrible chronic back pain (and other Musculo-skeletal pain) can be, as do I, and it usually isn't anything you're going to cure, but you should be able to obtain some relief. I have a back brace - several actually - but one that is very "beefy" and helps when standing - but makes sitting a problem. There's no great solution for the miracle that is our back! It needs to hold us erect, and yet allow us to bend, so it's quite a conundrum! Sometimes my sacroiliitis is enough to make me cry! I've had so many injections and types of therapy - I can't count. Nothing has helped much. I have involvement in my Cervical, Thoracic, Lumbar, and Sacral Vertebrae. I have always been an "over- achiever" - lol.
Keeping your muscles strong is the best thing - it helps hold you together!!! Unfortunately, due to the nature of so many of my serious systemic illnesses, I am bed-ridden too much of the time on oxygen etc.
Keep going to the best of your ability, and continue with your head held high - you know how you feel - no one else does. Remember too, that doctors can only treat conditions that they can understand as well. We have to do our best to describe our symptoms and keep at it until you feel understood. I have found it amazing how much pain I tolerate now, compared to years ago. Sometimes we just have to develop a tolerance to a bearable amount of pain. Some days I feel that I just can't take it anymore - but with God's grace - I do. I no longer look to others to validate my pain nor my reality - they can't and they don't. My doctors and family do though. But that's why sites like this are so important. You need the support from other chronic pain sufferers.
Take care, Jan
Thank you for your words. It gets so hard to hang in there. I am way too young to be having all of this........especially without no accident or injury. Something has "just happened". I truly believe, I do NOT have Fibro. A few Drs said the "all over" pain is from years of being tense and trying to protect the injured or damaged part that hurts, which would be my back and foot. My body stays in a state of tension.
Unfortunately......l ended up in the hospital ER last night after work. I could not take it anymore and I had been debating going for the past 2 weeks. I have to work a job which is putting me through hell emotionally right now. But, it is a pay check. I am getting to the point, I can not even sit because of the decompression on my back and disc. I say, I will NOT live with this because I won't. It would be different if I had been in a MVA or had some injury. I would at least know, what was wrong and what caused it. I am still at the "what is wrong and what caused it". I believe, if I find a good doctor and one who actually "cares", then I can get "fixed". In all honesty, I have thought about this many and many of days hrough all the crying I do, if they figure out what the problem is and they tell me there is nothing they can do..............I am done. I refuse to live with this pain. It has taken away my whole life. I would love to be married and have kids but that would also be out of the picture. Bearing a child, carrying a child, lifting a child is not possible at this point. And, I'm so grouchy with no patience.......I can't even tolerate living with myself right now. I get mad because NO ONE around me truly understands what I am going through and they all think I have pain here and there (no big deal). The ER doc was very nice and she felt bad for me. She stated her sister is having the same issue with no one being able to find out what is wrong with her and her pain. All they did was give me a shot of valium, give me a script of valium and a script of Soma Compound (which my dad has drove all over the city trying to find a pharmacy who cares it. I guess, they don't make it anymore). So, I woke up today and I felt like I had been hit by a huge MAC truck! Wow! I soaked in a tub of epsom salt and took a valium. Well, that made me limp and in no shape to drive to work. It helped with the muscle spasms going on in my neck, head and upper back but my lower back pain was still screaming. I got to thinking.....the valium and Soma is for muscle spasms......what I am supposed to take for the frickin' pain? At one point last night, the ER doc was trying to talk to me (my parents and sister showed up because my friend told them I was going.....not that I invited them) about being addicted to these drugs and that it is okay because "you" don't try to get addicted.....it just happens. So, does that mean, she is trying to tell me that "I" am addicted to something? I sure got very angry and defensive with everyone present. My family was talking to her, like I was not even present or "in my right mind" to know what they are saying. Once again, no one will ever know how much that hurt me. I understand EVERYTHING very clearly. I am, by NO means, addicted to any medication. I am the one who has refused to get anymore injections, take a long acting pain patch, or take all the scripts the docs keep writing for me. I have a stack of scripts in my cabinet that are not filled. I just tell the docs they didn't work because I don't want to be doped up on meds. I HATE taking medications of any kind. The strongest med I am taking is Nuceynta. It is new on the market. I had to educate the ER doc and my family..........if I was addicted.........then I would be taking these meds when I don't really need them.....I would be taking more than what the bottle states.........and my example was Sunday, when I had only taken 1 in the morning and 1 more at night. I had been in pain all day, at home, but I never took any. I have only taken 1 today because I don't want to take them. So, let me ask everyone else..........am I addicted to these pain meds????? That hurt! I am a middle class female, who has morals and values, who is a billing manager for a local physicians office, and who would help anyone if asked. I quit smoking 3 years ago and I rarely ever drink alcohol. Once again, am I addicted??? This kind of ignorance from the Drs, my family, friends and co-workers......is what's going to help put me in my grave early. I am trying to manage and function every day, then I get all of this on top of it. No, I don't have a good support system around me. I am actually better off by myself. But, I can't function by myself and I can't take myself to Cleveland to get help.
My screwed up foot is causing my gait to be off, my back and hip alignment to be off, my bursitis, my weak knee, my si joints, etc......... The foot and back is creating everything that is pain related. All the other internal issues is something different and I can deal with those.
I am sorry, but I must end for now. I am frustrated, angry, hurt, upset and agitated. I don't like to talk about it or even thing about it anymore. Last night was another slap in the face to me.
Unfortunately......l ended up in the hospital ER last night after work. I could not take it anymore and I had been debating going for the past 2 weeks. I have to work a job which is putting me through hell emotionally right now. But, it is a pay check. I am getting to the point, I can not even sit because of the decompression on my back and disc. I say, I will NOT live with this because I won't. It would be different if I had been in a MVA or had some injury. I would at least know, what was wrong and what caused it. I am still at the "what is wrong and what caused it". I believe, if I find a good doctor and one who actually "cares", then I can get "fixed". In all honesty, I have thought about this many and many of days hrough all the crying I do, if they figure out what the problem is and they tell me there is nothing they can do..............I am done. I refuse to live with this pain. It has taken away my whole life. I would love to be married and have kids but that would also be out of the picture. Bearing a child, carrying a child, lifting a child is not possible at this point. And, I'm so grouchy with no patience.......I can't even tolerate living with myself right now. I get mad because NO ONE around me truly understands what I am going through and they all think I have pain here and there (no big deal). The ER doc was very nice and she felt bad for me. She stated her sister is having the same issue with no one being able to find out what is wrong with her and her pain. All they did was give me a shot of valium, give me a script of valium and a script of Soma Compound (which my dad has drove all over the city trying to find a pharmacy who cares it. I guess, they don't make it anymore). So, I woke up today and I felt like I had been hit by a huge MAC truck! Wow! I soaked in a tub of epsom salt and took a valium. Well, that made me limp and in no shape to drive to work. It helped with the muscle spasms going on in my neck, head and upper back but my lower back pain was still screaming. I got to thinking.....the valium and Soma is for muscle spasms......what I am supposed to take for the frickin' pain? At one point last night, the ER doc was trying to talk to me (my parents and sister showed up because my friend told them I was going.....not that I invited them) about being addicted to these drugs and that it is okay because "you" don't try to get addicted.....it just happens. So, does that mean, she is trying to tell me that "I" am addicted to something? I sure got very angry and defensive with everyone present. My family was talking to her, like I was not even present or "in my right mind" to know what they are saying. Once again, no one will ever know how much that hurt me. I understand EVERYTHING very clearly. I am, by NO means, addicted to any medication. I am the one who has refused to get anymore injections, take a long acting pain patch, or take all the scripts the docs keep writing for me. I have a stack of scripts in my cabinet that are not filled. I just tell the docs they didn't work because I don't want to be doped up on meds. I HATE taking medications of any kind. The strongest med I am taking is Nuceynta. It is new on the market. I had to educate the ER doc and my family..........if I was addicted.........then I would be taking these meds when I don't really need them.....I would be taking more than what the bottle states.........and my example was Sunday, when I had only taken 1 in the morning and 1 more at night. I had been in pain all day, at home, but I never took any. I have only taken 1 today because I don't want to take them. So, let me ask everyone else..........am I addicted to these pain meds????? That hurt! I am a middle class female, who has morals and values, who is a billing manager for a local physicians office, and who would help anyone if asked. I quit smoking 3 years ago and I rarely ever drink alcohol. Once again, am I addicted??? This kind of ignorance from the Drs, my family, friends and co-workers......is what's going to help put me in my grave early. I am trying to manage and function every day, then I get all of this on top of it. No, I don't have a good support system around me. I am actually better off by myself. But, I can't function by myself and I can't take myself to Cleveland to get help.
My screwed up foot is causing my gait to be off, my back and hip alignment to be off, my bursitis, my weak knee, my si joints, etc......... The foot and back is creating everything that is pain related. All the other internal issues is something different and I can deal with those.
I am sorry, but I must end for now. I am frustrated, angry, hurt, upset and agitated. I don't like to talk about it or even thing about it anymore. Last night was another slap in the face to me.
Hi Kelly,
I think you are approaching further diagnoses and pain management correctly through research, support and questions. The Cleveland Clinic sounds like the right place to begin. They may be able to find better solutions for you...at the very least offer better pain management.
Your correct, physicians are often scared off by questions. Litigation is high in the industry and they look for red flags, one of those include lots of questions by a family member. Although I beleive your sister was correct to ask questions on your behalf. In my opinion fusion is a very serious surgery with life long ramifications and should not be taken lightly. It can leave you with as many issues as remedies.
I was surprised to learn through researching that Fibro can set in after trauma or injuries, even following a severe illness.
Rather that one condition you may have several going on as I do. No I do not have fibro but I too often hurt in various regions of my body. My "list" of injuries, painful sites, conditions and surgeries would fill pages of a notebook. This does not mean I have Fibro. I just have a multitude of abnormalities. mostly due to a MVA some years ago but not all of them can be explained by it.
I have chosen to concentrate treatment on just three of the most pressing issues and just live with the rest. I beleive that one effects the other in many cases. As an example I have a completely torn left ACL, unrepaired. This causes a variance in my gait on the left side, knee and foot pain and my "good" SIJ to be painful along with trochanteric bursitis. Nothing can be done to repair the ACL so I must live with the side effects of that injury.
During the MVA some years ago my right femur was slammed into my right hip joint, nearly severing my right leg in the groin and causing injury to the right SIJ and also severed the psoas ligament and muscle (a very important structure to posture and ambulation). It produces similar symptoms to the left side. It is actually more painful than the left. The seat belt severed me to the spine and I have multiple internal issues for which there are not solutions. And I won't bore you with my list that goes on and on which includes many if not most of the conditions on your list and more....but I do not have Fibro. Thank goodness.
That is what I mean when one condition or pain can cause another. There is no more "fixing" me. I must play with the cards that I have been dealt. I exist on pain meds, muscle relaxers and see a DO to maintain as close to proper body alignment and function as feasible. I find that when my body is aligned as well as it can be I have less pain. That may help you also.
We all are different. In my opinion the best some of us can hope for is to find a astute, understanding and caring physician. Someone that can treat the most prevalent pain and empathize with our plight and journey through chronic pain.
Again I beleive the Clinic you have chosen will be a step in the right direction. They may be able to find reasons and solutions for your multiple painful sites/conditions. At the very least I hope they are able to offer you good pain management.
Please keep posing. I am interested to hear how you are doing and the results of your appointment at the Clinic. Take care and hang tough.
Peace,
~Tuck~
I think you are approaching further diagnoses and pain management correctly through research, support and questions. The Cleveland Clinic sounds like the right place to begin. They may be able to find better solutions for you...at the very least offer better pain management.
Your correct, physicians are often scared off by questions. Litigation is high in the industry and they look for red flags, one of those include lots of questions by a family member. Although I beleive your sister was correct to ask questions on your behalf. In my opinion fusion is a very serious surgery with life long ramifications and should not be taken lightly. It can leave you with as many issues as remedies.
I was surprised to learn through researching that Fibro can set in after trauma or injuries, even following a severe illness.
Rather that one condition you may have several going on as I do. No I do not have fibro but I too often hurt in various regions of my body. My "list" of injuries, painful sites, conditions and surgeries would fill pages of a notebook. This does not mean I have Fibro. I just have a multitude of abnormalities. mostly due to a MVA some years ago but not all of them can be explained by it.
I have chosen to concentrate treatment on just three of the most pressing issues and just live with the rest. I beleive that one effects the other in many cases. As an example I have a completely torn left ACL, unrepaired. This causes a variance in my gait on the left side, knee and foot pain and my "good" SIJ to be painful along with trochanteric bursitis. Nothing can be done to repair the ACL so I must live with the side effects of that injury.
During the MVA some years ago my right femur was slammed into my right hip joint, nearly severing my right leg in the groin and causing injury to the right SIJ and also severed the psoas ligament and muscle (a very important structure to posture and ambulation). It produces similar symptoms to the left side. It is actually more painful than the left. The seat belt severed me to the spine and I have multiple internal issues for which there are not solutions. And I won't bore you with my list that goes on and on which includes many if not most of the conditions on your list and more....but I do not have Fibro. Thank goodness.
That is what I mean when one condition or pain can cause another. There is no more "fixing" me. I must play with the cards that I have been dealt. I exist on pain meds, muscle relaxers and see a DO to maintain as close to proper body alignment and function as feasible. I find that when my body is aligned as well as it can be I have less pain. That may help you also.
We all are different. In my opinion the best some of us can hope for is to find a astute, understanding and caring physician. Someone that can treat the most prevalent pain and empathize with our plight and journey through chronic pain.
Again I beleive the Clinic you have chosen will be a step in the right direction. They may be able to find reasons and solutions for your multiple painful sites/conditions. At the very least I hope they are able to offer you good pain management.
Please keep posing. I am interested to hear how you are doing and the results of your appointment at the Clinic. Take care and hang tough.
Peace,
~Tuck~
You are not being nosy at all. I appreciate anyone's advice or suggestions. I have done research and I listen to what the Drs say but they are not telling me everything or putting the pieces together for me. I haven't told my whole medical history but maybe there is something else that I may not consider relevant but could be important.
I am by far, not an athlete or former gymnast. I was in track one year and I played volleyball one year. I have never had a broken bone or major injury of any kind. I was diagnosed with Scoliosis when I was in grade school and was an ortho dr for that. After time, the dr stated it corrected itself. My mom used to take me to the Chiropractor when I was younger due to minor back pain. Over the years, I have been dx with:
*Allergies
*Endometriosis - Had Laparoscopic surgery
*IBS/IBD (They tested for Crohn's but came back negative. Dr said that can happen and one day the test might show up positive)
*Colitis - Last colonoscopy, Dr stated the colitis was gone (another Dr tells me that colitis does not go away but the symptoms might not be present)
*Gastritis
*Acid refulx
*Interstitial Cystis
*Kidney stones x2 - Had surgery first time and Lithotripsy surgery 2nd time
*Migraines/Headaches
*TMJ - wear splint at night (I grind and clinch teeth. I snore loud)
*Carpal Tunnel - Had surgery in right hand
*Thumb joints loose - Had surgery on right thumb (Dr took tendon out of my arm, put a hole in the joint, wrapped tendon around joint to secure it and make it tighter. Never got the left one done because I still had pain in the right one. After surgery, therapy stated they had never really seen anyone as young as me with loose thumb joints unless they were previous athletes/gymnast or had an injury)
*Fibroids -
*Bursitis - left knee
*Torn Peroneal tendon w/subluxation - (One day, my foot started hurting. I had not injured it, sprained it, twisted it or anything. I was at work with high heal wedge sandals. I waited 5 mths, thinking it would go away. I went to Podiatric surgeon. I was given an injection in the top of my foot, put in a brace and sent to physical therapy. I went back to the Dr several more times. During this period, my outside ankle was swollen. After I decided to get surgery to try and "fix" my foot, so I could walk better, they ordered an MRI. The MRI showed my tendon was actually torn. I was told, I was born without that groove behind your ankle bone, that the peroneal tendon sits in. So, at some point in time, I did something to the tendon to make it start going back and forth over the ankle bone that sticks out. After a long period of it going back and forth when I walked, the tendon started to become very thin, worn and torn. I only thing I have been able to think of is.....I had twisted my ankle about 3 times when I wore some clogs I have. I just can't remember which foot I kept twisting. If it was that left ankle, then the twisting might have stretched that tendon so it would start going back and forth over the bone when I walked. I have to be careful not to damage the right one since that one does not have a groove either. The surgery was done 7/2009 and I am still under the care of the surgeon due to still having swelling and pain. The new MRI showed Edema and possibly the start of a stress fracture.)
*Achilles Tendonitis - Right & Left (I have custom made orthotics I wear every day in my tennis shoes)
*Heal Spurs - Right & Left (I have had a steriod injection in both heals, giving me no relief. The orthotics and heal lifts in my shoes are supposed to help the achilles and spurs)
*Degenerative Disc Disease L4-5
*Pars Defect - I was told I could have been born with this or it could have happened sometime when I was little and didn't know it. (No one has ever called it a pars fracture)
*Lumbar Spinal Stenosis
*Lumbar Spondylolisthesis L5-S1
*Scaroilitis
*Lumbar-sacral Radiculopathy L4
*Chronic Back Pain - (I have had 2 1/2 yrs worth of steriod injections. I have taken many medications that are used for pain, fibro, anxiety and depression with no relief. I have been to x3 different physical therapy places with no relief.)
I thought, maybe the pain in the foot was causing me to walk different, which threw my gait off. Over time......I think it created back pain to start. I thought, if I got my foot fixed by surgery, then maybe my back would get better. Wrong!
I have had x2 EMG's done in the past 4 years and both were negative. The pain running down the buttock and leg has weakened the knee. I just had blood work done for arthritis and it was negative. I have the "all over, bruised" feeling. If I poke my chest, arms, stomach, sides, and legs.....they all are sore and feel bruised. My pain has also went to the Thoracic region. I had an MRI on this area and nothing was found. The numbness in my arms and hands started a week ago. It is not 24 hours a day but off and on all day long. I have been getting really aggitated and having a feeling like I am going to come out of my skin. When I get that feeling, it feels like it just keeps building up and building up to where I want to explode. I don't know how else to describe it. Sorry. Also, a co-worker told me her husband had been in a lot of pain with his back. He could not get out of bed but the MRI's showed very little bulging of the disc. When they went in to do a discectomy, they found that the bulge went around the vertabrae and that is why it wasn't bulging much on the MRI. When the bulge went around, it was on top of a nerve. That is why he was in so much pain but everyone kept blowing him off because the MRI did not look bad. I have been wondering if this is part of my issue.
A lot of my history consists of inflammatory conditions and also tendon/ligament conditions. That is the only part I have put together.
I think I have everything listed that I can remember. I hope this helps. Again, any suggestions or advise would be great.
Thank you for your time!
Kelly
I am by far, not an athlete or former gymnast. I was in track one year and I played volleyball one year. I have never had a broken bone or major injury of any kind. I was diagnosed with Scoliosis when I was in grade school and was an ortho dr for that. After time, the dr stated it corrected itself. My mom used to take me to the Chiropractor when I was younger due to minor back pain. Over the years, I have been dx with:
*Allergies
*Endometriosis - Had Laparoscopic surgery
*IBS/IBD (They tested for Crohn's but came back negative. Dr said that can happen and one day the test might show up positive)
*Colitis - Last colonoscopy, Dr stated the colitis was gone (another Dr tells me that colitis does not go away but the symptoms might not be present)
*Gastritis
*Acid refulx
*Interstitial Cystis
*Kidney stones x2 - Had surgery first time and Lithotripsy surgery 2nd time
*Migraines/Headaches
*TMJ - wear splint at night (I grind and clinch teeth. I snore loud)
*Carpal Tunnel - Had surgery in right hand
*Thumb joints loose - Had surgery on right thumb (Dr took tendon out of my arm, put a hole in the joint, wrapped tendon around joint to secure it and make it tighter. Never got the left one done because I still had pain in the right one. After surgery, therapy stated they had never really seen anyone as young as me with loose thumb joints unless they were previous athletes/gymnast or had an injury)
*Fibroids -
*Bursitis - left knee
*Torn Peroneal tendon w/subluxation - (One day, my foot started hurting. I had not injured it, sprained it, twisted it or anything. I was at work with high heal wedge sandals. I waited 5 mths, thinking it would go away. I went to Podiatric surgeon. I was given an injection in the top of my foot, put in a brace and sent to physical therapy. I went back to the Dr several more times. During this period, my outside ankle was swollen. After I decided to get surgery to try and "fix" my foot, so I could walk better, they ordered an MRI. The MRI showed my tendon was actually torn. I was told, I was born without that groove behind your ankle bone, that the peroneal tendon sits in. So, at some point in time, I did something to the tendon to make it start going back and forth over the ankle bone that sticks out. After a long period of it going back and forth when I walked, the tendon started to become very thin, worn and torn. I only thing I have been able to think of is.....I had twisted my ankle about 3 times when I wore some clogs I have. I just can't remember which foot I kept twisting. If it was that left ankle, then the twisting might have stretched that tendon so it would start going back and forth over the bone when I walked. I have to be careful not to damage the right one since that one does not have a groove either. The surgery was done 7/2009 and I am still under the care of the surgeon due to still having swelling and pain. The new MRI showed Edema and possibly the start of a stress fracture.)
*Achilles Tendonitis - Right & Left (I have custom made orthotics I wear every day in my tennis shoes)
*Heal Spurs - Right & Left (I have had a steriod injection in both heals, giving me no relief. The orthotics and heal lifts in my shoes are supposed to help the achilles and spurs)
*Degenerative Disc Disease L4-5
*Pars Defect - I was told I could have been born with this or it could have happened sometime when I was little and didn't know it. (No one has ever called it a pars fracture)
*Lumbar Spinal Stenosis
*Lumbar Spondylolisthesis L5-S1
*Scaroilitis
*Lumbar-sacral Radiculopathy L4
*Chronic Back Pain - (I have had 2 1/2 yrs worth of steriod injections. I have taken many medications that are used for pain, fibro, anxiety and depression with no relief. I have been to x3 different physical therapy places with no relief.)
I thought, maybe the pain in the foot was causing me to walk different, which threw my gait off. Over time......I think it created back pain to start. I thought, if I got my foot fixed by surgery, then maybe my back would get better. Wrong!
I have had x2 EMG's done in the past 4 years and both were negative. The pain running down the buttock and leg has weakened the knee. I just had blood work done for arthritis and it was negative. I have the "all over, bruised" feeling. If I poke my chest, arms, stomach, sides, and legs.....they all are sore and feel bruised. My pain has also went to the Thoracic region. I had an MRI on this area and nothing was found. The numbness in my arms and hands started a week ago. It is not 24 hours a day but off and on all day long. I have been getting really aggitated and having a feeling like I am going to come out of my skin. When I get that feeling, it feels like it just keeps building up and building up to where I want to explode. I don't know how else to describe it. Sorry. Also, a co-worker told me her husband had been in a lot of pain with his back. He could not get out of bed but the MRI's showed very little bulging of the disc. When they went in to do a discectomy, they found that the bulge went around the vertabrae and that is why it wasn't bulging much on the MRI. When the bulge went around, it was on top of a nerve. That is why he was in so much pain but everyone kept blowing him off because the MRI did not look bad. I have been wondering if this is part of my issue.
A lot of my history consists of inflammatory conditions and also tendon/ligament conditions. That is the only part I have put together.
I think I have everything listed that I can remember. I hope this helps. Again, any suggestions or advise would be great.
Thank you for your time!
Kelly
Hi again, I'm interested to know more about your condition in order to make some additional suggestions. You stated that you have Degenerative Disc Disease - was this related in any way to any weakening of the vertebrae causing the pars defect and resultant spondylolithesis? Or was it a Pars fracture? Regardless, you no doubt have nerve root impingement, causing radiating pain to the leg and/or ankle. What caused the torn tendons in the ankles - was that an injury which contributed also to the Achilles inflammation? On paper, you appear like a former athlete - gymnast or something? Or accidents?
You didn't mention where the Discs are that are degenerating - if cervical - it could be causing the arm numbness. Could you fill in some of this info? I certainly don't want to pry, so please let me know if you'd rather not divulge this information. It would be hard to give advice as to who to see for the most helpful consult without knowing, though.
I will say that none of your conditions or stated symptoms seem related to any systemic issue - such as autoimmune etc. They are very "injury or wear and tear type" conditions. So, even if the pars defect is caused by arthritis, it would be osteo-arthritis from degeneration (worn out!!) Even though I have all the Systemic Diseases, I still managed to also have a fancy case of Cervical DDD and Osteo-Arthritis of the spine, plus sacroiliitis and - well - you name it!
If I were you, I'd want to make sure to get expert opinions about how much narrowing and/or impingement is occurring in the vertebrae. You don't want to be unprotected.
If possible - answers to my nosy questions? Take care, Jan
You didn't mention where the Discs are that are degenerating - if cervical - it could be causing the arm numbness. Could you fill in some of this info? I certainly don't want to pry, so please let me know if you'd rather not divulge this information. It would be hard to give advice as to who to see for the most helpful consult without knowing, though.
I will say that none of your conditions or stated symptoms seem related to any systemic issue - such as autoimmune etc. They are very "injury or wear and tear type" conditions. So, even if the pars defect is caused by arthritis, it would be osteo-arthritis from degeneration (worn out!!) Even though I have all the Systemic Diseases, I still managed to also have a fancy case of Cervical DDD and Osteo-Arthritis of the spine, plus sacroiliitis and - well - you name it!
If I were you, I'd want to make sure to get expert opinions about how much narrowing and/or impingement is occurring in the vertebrae. You don't want to be unprotected.
If possible - answers to my nosy questions? Take care, Jan
Thank you for your information. My lab work is negative for the arthritis. The doc believes a lot of my symptoms are Fibro. But, in the past week......both arms and hands have been going numb off and on. I'm not sure what is going on there. I'm kind of scared. I have an appt set up now with Cleveland Clinic Spine Institute. They have neuro, pain, ortho, and rheumo docs available in the Institute once I get there. They will look at everything as a whole. I have a lot to do between now and my appt. I want to get all my records, do an outline, type up questions, etc..... so I can make the most of the appt and one time shot if my insurance will approve one visit out of network. I have to find someone to go with me, which is another problem. I also have to find good transportation to take me for the day. The Clinic is talking about me spending the night in a hotel and having more appts the next day or testing. They are also very concerned about my new arising problems this week regarding the numbness. They feel I need to address it with my PCP right now. But, my PCP keeps blowing me off every time I call and telling me to go find a Rheumo doc. They won't give me answers anymore. I have been in tears with them because of the way I am being treated by them. I have NEVER had any problems with them until now. I feel like I am being blowed off from every direction. My pain has also gotten so bad, that I feel like I am about to "come out of my skin". Does anyone ever experience this feeling? I don't even know how to describe it. I couldn't get out of my work clothes the other night, fast enough, to jump in a bath tub of warm water with Epsom salt. When I was driving home, I was in all kinds of positions behind the wheel. I was very aggitated and couldn't sit still. I don't know what that is or what is causing it. Any ideas from anyone?
Hi - I thought I'd chime in again. The Orthopedic / Rheumatology union sounds like a great idea for those with RA. I don't know your clinical picture, so can't comment as to whether that would be of help to you, but sounds like your spinal issues aren't related to RA - at least with the limited info here. Because Rheumatoid Arthritis actually causes bone damage in the joint, Orthopedic doctors are needed for any surgical repair. If, however, another type of arthritis is present causing the arthralgia, or it's from autoimmune diseases, etc., the two specialties wouldn't be used together. Sounded like you have more injury related issues with the torn tendons, and the DDD (I have that too - such fun) both unrelated to arthritis. Bursitis is often treated by Rheumatologists, even though it's not technically arthritis. Inflammation of the bursa sac can cause a lot of pain - I know that for sure
It gets quite confusing, I know, but there aren't any good doctors who cover ALL the many musculo-skeletal problems we encounter. Plus - autoimmune diseases are supposed to be covered by Rheumys, but they don't all like working with those patients. Fibromyalgia patients are treated by Rheumys, but the only treatment is exercise, diet, and analgesics - stronger meds as needed (like Lyrica or Neurontin)
I don't see anything in your post that indicates any neurological issue, but - I know so little about your condition. I just like to give any information I have to try to help. Having so many diagnosis and for so many years - it's given me quite the education (plus the official study prior to the illnesses).
The best advice I can give is for you to write down a medical history for yourself. List every injury, illness, symptom, treatment, test, etc. and the dates. List any diagnosis or test result and who the doctor was. Make a couple copies when it is in a coherent presentation so you can give it to the doctors you're able to see. Making use of the time you have with doctors is so important. As you said - you have this one shot to get some answers.
I wish you well. Blessings, Jan
It gets quite confusing, I know, but there aren't any good doctors who cover ALL the many musculo-skeletal problems we encounter. Plus - autoimmune diseases are supposed to be covered by Rheumys, but they don't all like working with those patients. Fibromyalgia patients are treated by Rheumys, but the only treatment is exercise, diet, and analgesics - stronger meds as needed (like Lyrica or Neurontin)
I don't see anything in your post that indicates any neurological issue, but - I know so little about your condition. I just like to give any information I have to try to help. Having so many diagnosis and for so many years - it's given me quite the education (plus the official study prior to the illnesses).
The best advice I can give is for you to write down a medical history for yourself. List every injury, illness, symptom, treatment, test, etc. and the dates. List any diagnosis or test result and who the doctor was. Make a couple copies when it is in a coherent presentation so you can give it to the doctors you're able to see. Making use of the time you have with doctors is so important. As you said - you have this one shot to get some answers.
I wish you well. Blessings, Jan
Hello. Oops, I forgot that one. Yes, I actually saw a Neurosurgeon. My first visit, he stated I could do a spine fusion if I was tired of the pain. The second visit (last month), my sister went with me and asked a lot of questions regarding my situation and the spine fusion. By the end of the appt, this Dr decided he did not want to do a spine fusion on me and told me to continue doing what I am doing. He then walked out of the room and I was left crying. I have obtained a copy of that visit and he even stated......my sister asked a lot of question. This Dr does not like to be questioned and doesn't like answering questions, either. I had another Dr do an EMG a few weeks ago on my lower left extremity and it was normal. My foot surgeon ordered that and a blood test to check for Arthritis.
Tuck, I have done some research this week and found that The Cleveland Clinic has a Orthopedic and Rheumotolohist division. They work together on both aspects. There is a Dr that specializes with Fibro in this division of the clinic. I think, I will be trying to get my insurance to approve me going out of network and state, so I can go there and hopefully get some help.
Tuck, I have done some research this week and found that The Cleveland Clinic has a Orthopedic and Rheumotolohist division. They work together on both aspects. There is a Dr that specializes with Fibro in this division of the clinic. I think, I will be trying to get my insurance to approve me going out of network and state, so I can go there and hopefully get some help.
Yes, this sounds like a situation like I am going through though I was told the answer already. I need to go to U of M to see a team of specialists to check me out further eventhough I have a diagnosis they want to make sure.
AND WAIT before I go further. In your list of specialists. I DID NOT see a neurologist? Why have you not seen one? Brain abnormalities? MS? Something like that would explain all of this.
AND WAIT before I go further. In your list of specialists. I DID NOT see a neurologist? Why have you not seen one? Brain abnormalities? MS? Something like that would explain all of this.
Hi,
I have a similar situation - so many disorders - so few doctors! But Tuck is right - getting into a large clinic would afford you the best opportunity to see the most specialists. Unfortunately, you have to pick one to get the admission, but from there, you can be seen by several different doctors during your visit. It all depends on whether you can get into one.
I wish you the best!
I have a similar situation - so many disorders - so few doctors! But Tuck is right - getting into a large clinic would afford you the best opportunity to see the most specialists. Unfortunately, you have to pick one to get the admission, but from there, you can be seen by several different doctors during your visit. It all depends on whether you can get into one.
I wish you the best!
That's a great question. In my experience when you go to a National Clinic such as Mayo you are often seen by a "team" of physicians or one will refer you to another within the Clinic..
Your PCP may have the best suggestions for you. Based on what you have posted I think I would want the "all over" pain diagnosed....so I may request to see an Internal Medicine Physician or Rheumatologist or an Immunologist. Discuss this in detail with your PCP. Again hopefully he/she will best be able to help you with your decision.
Some times you can get a referral for a limited time period to the clinic itself rather than a specific physician. I might try that route.
Good luck to you. Please let us know what you decide.
Peace,
Tuck
Your PCP may have the best suggestions for you. Based on what you have posted I think I would want the "all over" pain diagnosed....so I may request to see an Internal Medicine Physician or Rheumatologist or an Immunologist. Discuss this in detail with your PCP. Again hopefully he/she will best be able to help you with your decision.
Some times you can get a referral for a limited time period to the clinic itself rather than a specific physician. I might try that route.
Good luck to you. Please let us know what you decide.
Peace,
Tuck
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