I have been diagnosed with idiopathic thoracic sm. Was just wondering if anyone else has it there and what are your symptoms. Drs. dont seem to tell you a whole lot and figured it would be better to hear from others that have this same problem.

I have the same thing Denise. I do know what caused mine though. What questions do you have? If I can help I would be happy too. Debra

Hi Denise. I have idiopathic syringomyelia also, however mine is cervical...so along with Debra I am happy to help if I am able.:) My list of symptoms is vast as I am sure most of ours are, ranging from sensory loss to chronic pain. What symptoms are you experiencing? Meggie

I sometimes have dizziness. Sometimes I feel kinda short of breath. I was having bad nausea. Pain in my neck but I do have some ddd in the cervical part plus a straight neck no natural curve. Tingling in the hands and feet left foot I have alot of pain on the bottom of foot. Most pain in legs is on back of legs. So much more. Helps to be able to talk with others with this.

The dizziness I can relate to, mine was usually related to the extreme headaches I would get before the shunting operation. I have the tingling in my hands and feet also (called paresthesia), then they go numb, shooting pain and burning if I don't positionally correct the issue. I wear custom made (I have small wrists) carpal tunnel syndrome braces when I sleep and it makes a huge difference in lessening the symptoms during the day...just a thought. I have myofascial pain syndrome in my neck and shoulders and neuropathic pain from my neck down but mine is most severe in my neck and quads. I get a great deal of relief from an anticonvulsant medication (now on Lyrica). Have your physicians differentiated which symptoms are from which conditions? I am glad you joined, talking with others afflicted is a great way to get much needed support when living with a chronic disorder, for in my opinion the psychological tole is many times equivalent to that of the physical one.:) Meggie

Hi Denise, I recently had to be hospitalized for a few days because I was vommiting and somehow it caused my blood presure to become erradic.I have a hiatle hernia and I get sick also with stomach problems, like Meggie said the list of problems is huge, but I am still doing pretty good over all. I have no idea if it is related,but right now I have a staff infection in my eyes and I am on four different anti biotics and it is terribly painful! I agree with Meggie about the psychological tole as well, I am a gogo kind of person and can not do what I use to or what I want to any more. The biggest adjustment of all for me. FYI...always protect your neck and back from any falls or blunt force. This could make symptoms worse. Debra

Thanks guys I am so glad I found this site. I don't feel like an oddball. Its also so much easier to deal with something if you have some info. I have always been someone who was always on the go, hard working, and ect. You really take your health for granted when you have it. It is much easier to talk to someone that has the same problems. I go to a neurosurgeon in Winston Salem Nc at a baptist university hospital. They are really nice. I return may 3 to have another mri.

Meggie, it looks like you have a straight neck also. Do you feel some days its so hard to even hold your neck up?

Hi Denise...yeah we are like the club no one wants to ever have to be a member of:) I agree about taking your health for granted, I am a go-goer also pursuing my doctorate but have had to defer my clinicals for a year while I recover from the shunting operation, but from the damage I am not sure I will be physically able to perform them at all. When you have to put your life on hold or redirect your daily lifestyle and dreams completely it puts the frailty of your anatomy and physiology in perspective. As far as I know I have a normal curvature in my cervical spine but I do have a hard time holding my head up for long periods since the surgery from the removal of my 2.? lamina (loss of muscle attachment sites) and more so from the myofascial pain syndrome. My daughter says my x-rays look like cookie monster took a bite out of my neck.:) I hope for you the best with your next MRI, mine is May 4. I am awaiting a potential Chiari 0 diagnosis and if so looking at decompression surgery, if not we are getting sent to The Chiari Institute in Great Neck N.Y. as the only other option for a causative agent known is spinal cord tumor.:( It's sad when you hope for a birth defect. What are your surgeons discussing for possible causes of your syrinx?

Hello, I'm new here but glad I found this site! I too was diagnosed with idiopathic thoracic SM about 2.5 yrs. ago. Things have been getting progressively worse to the point where I'm now out of work and I'm in so much pain. I'm only 25 and I feel like this shouldn't be happening to me and all the Dr.'s I've seen know little about the disorder and seem to brush me off because I'm "young." I really think it's just because they don't know about the condition. I'm getting really down and feeling very helpless and like nobody will help me! Any tips on how to find a Dr. that can help? Also how do you guys cope day to day? I've never been a depressed person at all but have been lately because of all this.

Hi Ericatom1:) welcome! I had a similar experience with my first neurologist who stated a syrinx and syringomyelia were the same thing...so I fired him.;) I Believe the proper care is somewhat like buying a new car in that you need to shop around for the one that fits you best within your means. I think you hit the nail on the head as one of the main problems with this disorder is the lack of information in the medical community and therefore a tendency to dismiss valid symptoms as psychosomatic or unrelated. I am young also (31), one is bound to feel robbed of their prime as with any life changing experience there are the unavoidable stages of grief. My advice would be to educate yourself as much as possible to be your own best advocate, research neurosurgeons in you area and ask questions like how much experience they have with this disorder. There is a great handbook I found most helpful with understanding the anatomy and physiology of the disorder. http://www.asap.org/index.php/disorders/patient-handbook/ Your depression is well validated. This disorder is a huge stress and it is felt every single day. I also have chronic pain and experience good days and bad ones. I see a counselor on a regular basis to help process my emotions in a healthy way. I am going into psychiatry myself and seem to find peace in understanding the "why" and so immerse myself in the literature. I hope that might help...you always have others to talk to and lean on here so don't hesitate.:) Meggie

Does anyone else have posterior annular tears?I have them from T4-T12?

ERICATOM where is you cyst located in the thoracic spine?

Does anyone have chest tightness with their thoracic syringomyelia?

Hi Past friends and New friends! I haven't logged on in a long while. But I did want to see how everyone is doing. Seems about the same as me. The stupid syrinx is getting worse. The dizzy spells mentioned above, yes. They are pretty random. They tried vertigo tests on me, but its not that. They just come on random. I am now starting to get the cape feeling across my back and shoulders. My legs hurt and don't like to climb up anything, they feel like lead weights. At night my arms numb up and I end up waking up all the time. Trying to reposition myself and trying to get into a spot that my neck is not hurting and where my arms don't numb up. No such luck. Neuro says to just play things conservatively until I guess things go horribly awry where they can't be ignored anymore. I'm on the west coast, none of these doctors I've encountered know what the hell they are talking about. Its really frustrating. I don't remember at what location the syrinx is at, it's in my neck. Sometimes it feels like someone has tied a rope around my neck. The whole things sucks and I am really fed up with the medical system in this country. I know that may be going off on another tangent but when you can't afford the care it makes life miserable sometimes. OK....I guess that is my rant for now. Unless I get onto some of the other topics and feel like chiming in again :-) I hope everyone is doing OK.

Hi Past friends and New friends! I haven't logged on in a long while. But I did want to see how everyone is doing. Seems about the same as me. The stupid syrinx is getting worse. The dizzy spells mentioned above, yes. They are pretty random. They tried vertigo tests on me, but its not that. They just come on random. I am now starting to get the cape feeling across my back and shoulders. My legs hurt and don't like to climb up anything, they feel like lead weights. At night my arms numb up and I end up waking up all the time. Trying to reposition myself and trying to get into a spot that my neck is not hurting and where my arms don't numb up. No such luck. Neuro says to just play things conservatively until I guess things go horribly awry where they can't be ignored anymore. I'm on the west coast, none of these doctors I've encountered know what the hell they are talking about. Its really frustrating. I don't remember at what location the syrinx is at, it's in my neck. Sometimes it feels like someone has tied a rope around my neck. The whole things sucks and I am really fed up with the medical system in this country. I know that may be going off on another tangent but when you can't afford the care it makes life miserable sometimes. OK....I guess that is my rant for now. Unless I get onto some of the other topics and feel like chiming in again :-) I hope everyone is doing OK.

Denise 2576-my syrinx is located at t4-t8. It has recently grown. Has anyone had experience with theirs growing? This happened within a year. I haven't signed on in a long time because I've been battling this stuff! Now I recently have many other health issues creeping up that seemed to follow the syringomyelia diagnosis. I have been diagnosed with resulting generalized anxiety (I've never had problems with this), hypertension, rheumatoid arthritis, progressive scoliosis, and latent tuberculosis. Anyone else had other health problems pop up after diagnosis of sm?

Hi Ericatom1 Yes, I have lots of scoliosis going on. White matter of the brain (I think that's what it was). My neck and back are in constant pain. My legs are getting very heavy. I can walk flat surfaces ok but going up stairs they feel like lead weights. My vitamin D levels have dropped to a crazy low amount despite my taking vitamin D in more than average doses. I was dx with cancer about 7 years ago. So, I don't know if it's syrinx related or cancer related. My insurance has a $10k deductible. To expensive for me to go thru the battery of tests they want. I refuse to bring my family down in my medical bills. What a ridiculous country but that's a different topic. Hoping I can find some decent coverage when the open exchange comes on board this October and maybe next year I can get some real answers. Doubtful, but I'll remain as hopeful as I can. I hope you are feeling well today!

I am new to this site. Diagnosed with syringomyelia in 2008 due to Chiari 1 defect. My syrinx goes from C1 to T12. I had decompression surgery and spinal fluid is now flowing ok but my syrinx has not changed, so headaches and dizziness have gone but weakness,numbness, back pain, etc. etc. continue and slowly worsen. My doctors say they don't put drains in the syrinx any more, so have started on pain medication now.

Has anyone else with thoracic spinal sm experienced difficulty/pain when swallowing? I'm wondering if this may be a symptom of my disease

Hi, I'm new here too. I also have increasing numbness (site of syrinx T5/6) and having difficulty coping with fears (job/kids/love life). I still hold out hope with surgery. Anyone have a neurosurgeon with skill who has had success? I live near New Haven CT and hope to find a good surgeon.

Hi all, I was told I had syringomyelia about 13yrs ago. Last year I have an MRI done like every year. They did my mid, and lower back. Mine runs from t4-t10. Although it has gotten any bigger everything is getting worse. Now they tell me they also what appears to be a cyst at t2. They want to do a MRI on neck and brain now. The film didn't show any higher up then t2. I had to stop working Oct 8th 2013 because of numbness, weakness, tingling, burning, and chronic pain. The pain is headaches, neck, shoulders, hands, whole back, and down legs. I also have disc problems in neck and lower back so hard to tell what is causing what. The only treatment is pain meds. They told me they wouldn't do any type of surgery because they didn't want to make it worse. Its very hard for me. I have a hard time judging how hot or cold things are with my hands. Its hard to talk to people about it because they don't understand. Most tell how much their backs hurt and can work. They are always trying to compare their backs with mine. I'm not saying they are not in pain but the m not faking mine and I'm not lazy. I worked for 42yrs. And I'm not a drug addict. So I wish my family, friends, and coworkers would do what I ask and look this shit up. Sorry it gets very frustrating sometimes because no one understands.

I have not written here for some time, but I would like to tell you about my recent events. My divorce of over three years was final in July of this year. My attorney refused to give documents to the judge from my Neuro that disabled me. They told me I was to pretty and looked to good to be disabled and not the courts or friends nor family understand what I am dealing with on a daily basis. In reality because this disease effects many of us at different levels I am not sure anyone here really understands but we are the closest to relating to each others symptoms and having empathy for one another. My story in it's entirety reads like some really bad novel with out a happy ending. I am without medical care at this point and doing everything I can just to get through my days. I think I have contacted everyone I can think of to try and get help to no avail and some days it's a good thing I don't have a gun. Pain is so difficult to live with when no one understands or cares! I hope things will improve for you!

To Deb and 2muchpain, I here your pain and send you healing prayers. Deb - your attorney works for you. This is critical info for your divorce case. I can't imaging any attorney wouldn't jump on that. Is it too late for another attorney? I remember the days of my divorce. Very difficult in a healthy body let alone when you don't feel good. Hang in there. When I was going through it I would try to visualize something beautiful and hold it in my mind to crowd out the ugliness of the divorce. It helps in that moment. If you practice that strategy as often as possible, the beautiful moments add up. 2muchpain... I get that frustration. If you look healthy on the outside, its hard for others to understand neurogenic pain. It's hard to drum up the strength and bravery to muster through with little understanding from others. My boyfriend has had back stabbing pains from stenosis of the lower back that rendered him to his bed for 6 months to a year unable to work with 2 small children at the time and a wife with MS (who has since passed away from it). So I feel he understands. But not many do. Its difficult to hear reluctance from surgeons to operate. It seems so frustrating that today's medicine and all it's magnificent technology can't find a safer way to drain these blankity blank.....syrinxes. My neuro is willing to operate but has given me the usual warnings. I struggle with depression, anxiety and worry waiting for the proverbial "other shoe to drop". When do you yell "uncle" and operate?

Anyone been to Cleveland clinic for their sm? I've recently been told there are experts in sm there. I tried to get an appt with mayo and they sent me a letter saying they reviewed my case and basically told me in not so many words it was hopeless and just something I have to live with so they couldn't offer me an appt. I've been battling serious depression due to my symptoms progressing and no answers. I finally got a court hearing scheduled for the disability I filed for 2 years ago. Dealing with this disease is so hard. Just had an emg yesterday due to bad pain in my thigh and a week and numb leg. It yielded the problem was not originating in my leg leading my neuro to believe it is from the syrinx and the recent trauma of a fall I had. Almost nobody can understand what I am going through so I'm glad I have an outlet like this.

There is a few groups on FB that I belong to and many have had multible surgeries and most say they are no better off after suffering the process. Look for the groups and talk with some and get some vital feed back. My divorce is over and I am trying to sue my attorney. It is hard to believe what happened. Most do not realize the magnitude of what happened in court. I was by my self in court against my ex husbands attorney. I could not stop crying and the judge gave everything to my ex husband and left me with a small spousal support and half of his pension. No medical insurance and not enough money to live on. She told me to get a job and refused to acknowledge my medical condition. I really felt my ex bought off my attorney and I was railroaded in the court system. I was married for almost twenty seven years and it's as if the courts allowed my ex husband to destroy me. I do try to stay positive- but I am off of all medication and this pain 24/7 is tortuous at best! Thank you for your advice and check out the FB stuff I told you about cause there are a great bunch of people on there that also relate and have good advice.

Oh and one more thing....if you ever have to have an emg I recommend you ask for something to ease the nerves first. That was the single most painful test I have ever had!

Sorry to hear about your situation Ericatom. I thought the Mayo would be the most help. Damn we don't have a whole lot of hope then.

Hi all ,,it's been a month or so since last reply . I have been placed on Fentanyl patch 25 Mcg .for the ongoing pain ,,and tramadol for for break through pain (the Dr.s @ the pain & spine clinic in boise id. said this all they could do for Folks in the situation ) ..I'm not sure if the additional pain is from the mass (pencil lead thick 1-1/2 inch long sized tumor inside the cyst ..) and the Dr.s told me if the take tumor out I will me paralyzed from T 8 down ....and pain & weakness is getting worse ..weakness in legs & tingling is annoying at best .. but they "minght to be able to drain the cyst " no guarantees there either " ... I've been dealing with this since 12 of 2008 ..and was diagnosed in 12/2009 with the tumor & srynx ...and was placed on disability in 2012 ,,after 30 yrs driving truck ..can do that any more due to pain ..they had me on neurontin / didnt help ...the Fent. does help ! and the objective is to get medicare to place a New Wave neuro stimulator in spine later this year ...I was already approved ,so we'll see how that plays out ..... @ TOMUCHPAIN "" once soc sec disability found out I had this hydromelya w/ the tumor ) I was approved IMMEDIATELY ...not sure what's the deal with your 's ??? I hear ya all out there ..it's frustrating !!!!

Hi Everyone, Just wondering if anyone else has a 'warm water' feeling on their leg? This is my left leg, and really more my foot. It feels like someone has poured warm water on it. It lasts a few seconds and then gone. It happens at least once an hour. Before that started happening the back of my knee kept 'cramping.' At least it felt like a cramp. My neck and back are more painful than ever. No relief. So tired of this stupid thing.

No, haven't had that feeling. Getting and MRI today on lower back because left leg in hip, thigh, shin have been hurting really bad. Although I don't have the syringomyelia in lower back I'm having some problems down there. The pain in leg is different then the normal. I had injection last Tuesday and didn't do a damn thing for the pain. I hate all of this because it has been causing a lot of stress and anxiety I now have to take meds for. I don't want pills I just want problems fixed. It has taken my whole life and turned it upside down.

I was diagnosed with SM in the cervical area c3-t1 where the last image was taken in 2010. I had some wonderful doctors at that time who were ordering proper tests and monitoring me very closely. Unfortunately I had to move for family reasons and have not been able to find a doctor that will take me seriously and when I finally got a doctor to order an MRI my insurance wouldn't cover it because it was a pre-exsisting condition. So now I am working from scratch again. Responding to the earlier post I too have felt a very warm sensation last episode was this morning and immediately following that I was intermittently experiencing paralysis of both of my arms and hands and severe tremors in between the episodes my friend drove me to the ER and the doctor would not take me seriously, would not listen to what I was telling him , he finally ordered a basic cervical x-ray which only showed inflammation and straightening of my cervical spine which is pretty odd considering I have already been diagnosed with SM , Multilevel cervical DDD, and a few other bulging disks. I had tried to eplain all this to him but he remained passive, wrote me a script for prednisone, diagnosed me with cervical rediculopathy but stated he could not rule out the SM causing my symptoms but I could return to any activity without restrictions but the contradiction of his verbal recommendation and written discharge plan was unbelievable. He verbally told me I could do any and all activities without restriction, wrote me a note to return to work(already told him I was unable to work), then gave me written instructions to rest, avoid any lifting at all, and not to drive until cleared by my physican. I saw no point in arguing anymore as it was not helping at all. I am wondering has anyone else experienced intermittent paralyis?

So sorry to hear this about your situation. I haven't had that symptom yet but I wouldn't rule it out on the fact that I have all kinds of weird things happening. I learn to always get copies of my MRI reports and doctor reports every time I see them for my condition. I have good drs. now but I may also be facing a ins. thing because I went out on disability last October and I'm still considered a inactive employee which carries ins. I know they won't continue this because my FMLA ran out a month ago and they have no idea what to do. Work hasn't approved my disability one way or another yet and SSD and SSI has turned me down. My meds alone wouldn't allow them to work me. So I feel I should be hearing something soon from work. Anyways it always helps to have your own MRI and Dr. reports on hand in case you have to see other Drs. I fear the day when and if I have to change Drs because it took so fricking long to finally get ones who listen and understand that I have problems and symptoms they may not understand but realize they don't totally understand SM either and don't rule them out. Did find it helps to throw to folders worth of Medical history of treatments and MRI to help other Drs. know your history on this. I been going through this for 31 yrs. So I've learned a little. Hope everything works out for you. God bless

Gabrielle, I do get the warm water feeling. Sometimes it is most of my leg. And like you said, it is only for a few seconds, just long enough to make me look to see if there is something on me.

Ericatom1, I have trouble swallowing too. I even had my esophagus stretched. It helped for a few months. I am not going to have it done again.

Recently the swallowing issue has gotten worse too. I ate pork chops on a monday, apparently didn't swallow well and couldn't get it down. This was stuck this way until the following Monday! And I get the wet feeling on my foot too...it drives me insane constantly thinking my sock is wet! I had a friend from out of town visiting this past weekend. It was the first time her husband had been to the town we grew up in (she used to live here) and so we wanted to show him around. Just from riding in the car and coming and going over the weekend I ended up in the ER Monday night. I don't go unless I absolutely cannot take the pain because I don't like to be treated like a "med seeker" in the ER as they usually don't know much about SM. They did give me some injections of pain medicine and muscle relaxers which were helpful. My friend couldn't believe this happened. She said "just from riding and walking around?!". Yes ma'am. Sad. Anyway, when I called my normal dr for my normal refill (regular due date, not asking for an increase) for some reason she decided not to fill on my normal date and make me wait an extra 3 days. Um, was I not just in the ER? I didn't ask for an increase, early refill or anything other than the norm. I've heard they've been having issues with med seekers and overdoses in my area. But come on, I have valid serious issues and I'm on disability for a reason. I've never broken a rule or failed a urine test. So sick of being lumped in with the people who ruin it for us that have actual problems. My dr doesn't normally act this way so I was quite disheartened. Anyone else have these problems?

Erricatom1, I haven't had that happen to me. So far, they are willing to give me more than I need. In fact, I have ask them to give me only a few days meds at a time. I am very afraid of becoming addicted. I also don't want to get to my last years and have nothing that will work to ease my pain. I know exactly what you mean about riding and walking around causing enormous pain. It's very hard for others to comprehend. It often takes me three days to get over a day like that. However, you were much worse off than me. I have never had to go to the ER for pain. I have called the doctors office crying and my husband has picked up prescriptions that eased the pain just enough to keep me from crying. When that happens, I don't feel like doing anything at all but lying on my back and looking at the ceiling. I love to read, but even that causes more pain in my hands, arms, neck, shoulders and back than I can stand. It is soooooo boring! I usually just moan off and on as the pain surges. I am such fun to live with those days - not. I think I would talk to your doctor and see exactly what the problem was. You never know, it could have been an over-zealous worker and not the doctor. Or the doctor may not have been given the correct information. Also, if there are new "rules" you need to know, so that you will be prepared. It never hurts to clear the air, when done politely and with respect.

Eriatom1: so sorry to hear about you situation. I'm on the Fentanyl patch now because I can't swallow any solids anymore. All my other meds need to be crushed or liquid. I also get a feeling of water running down my leg. At first I use to think I wet myself. I also think maybe you need to call in for refills a couple days early as for some Drs. don't get them called in for a day or two. If you are just going to your family Dr. for pain meds you might want to ask him to refer you to a PM Dr. You will more then likely get meds to help you manage your pain more so you won't end up in the ER. Hope you get what you need to function day in and day out. I been going through this stuff for over 30 years now and know the pain you can go through each and every day. Good luck and God Bless

Pain? We all need to know and understand that the pain we experience is different for each and everyone of us. We all experience pain but it is at different intensities depending on many variables. I have had this disease for fifteen years. I've only been diagnosed for four years this month. I collapsed on a piece of furniture because I couldn't feel my legs, when I did, the brunt of the impact was in the middle of my back. The worst possible place on my body because it caused the already existing syrinx to expand. The pain and weakness I experienced back then is nothing compared to what I experience now on a daily basis. I'm only on dilaudid and although I could take 7 mg. three times a day I do not. My fear of addiction is huge, greater than my need to be pain free. Yes there are pull seekers out there, but I would never take any meds at all if it were not for this disease. I have really high blood pressure and the medications cause my heart to beat like it will pop out of my chest, my blood pressure goes down when I take the pain meds, it is quite a conundrum! We need a cure!

debdebradebbie, Do your legs often collapse because you can't feel them? It is getting where it happens to me several times a week. Also, do you ever stand up and take maybe one or two steps and then your legs simply won't move at all? No matter how hard you think about making them move, they still won't go. It scares me so bad when that happens! It sometimes makes me weep, thinking that this could be permanent any day. Getting stuck seems to only happen if I have been sitting for a while in one position. However, when my legs fall out from under me, that seems to happen any time. I hate it when I am at work and all the sudden one or both of my legs give way. Does any of this sound familiar to you or anyone else?

Cendriah: that part about legs to giving out has happened to me a couple of times in a month now. One time I feII off the porch. When I that happened I tore my hip. Now I got that to deal with along with more pain.

2muchpain, How awful! Were you just standing there, walking or just rising from sitting? Also, were you able to get up afterward? Did your legs work then? On me it's so weird, it happens suddenly and then it's better. Talk about looking like you just want attention!

I started down the steps and it was like I didn't have a leg there. I fell off the porch. I knee I hurt something but as for my leg it was ok. Both times I was starting down the stairs and after that my leg went back to normal. I can feel the weakness starting in my legs. Sometimes I can feel it wanting to give out. This is something new to me that began about 6 to 7 weeks ago.

This year has been really weird for me. I have been getting lots of new symptoms. I'm dropping things now also. I don't like anything touching my legs and now it's getting where I don't like anything touching my sides either. My inner legs start burning like I have a major sunburn on them. That's all new symptoms in the past few months. I to am scared of what's going on.

Yet again this month I've had issues with my longstanding prescriptions. I found out the law has changed and they now require written prescriptions for hydrocodone when they used to be able to call that in and my dr has been very overworked. Yes I just see my pcp. I did go to pain management for a bit but ended up back at my pcp. Before I became disabled I actually worked at the pain management clinic in my area as a medical assistant. Because of this it was too awkward to continue as a patient there as I am self conscious because I know people are wrongly judged there and so I felt I couldn't accurately describe my pain because I didn't want to look like a "typical" patient there (or what they consider typical as it is a VERY judgemental field). I ended up with tuberculosis (got tested when dx with ra and starting injections). The Meds I had to take for 6 months rendered my pain Meds virtually ineffective for the whole 6 months. A dna test even confirmed this. That was a hard time. But that's why I ended up at pain management and luckily my pcp was willing to take me back on after I no longer needed "heavy" pain Meds. While I was a patient there I did try the fentanyl patch as was described. It made me very sick (diarrhea is a side effect for some people). Then I tried long acting dilaudid which I had too much breakthrough pain on. Now my pcp has me on OxyContin and percocet for breakthrough. I hate this as I am only 28 but pain has gotten so bad in the 5 or 6 years since I was diagnosed. I also on occasions lose my leg completely and fall. I have so many symptoms I cannot even describe them all and yet to find a good neuro. Seeing a new dr in December though and hoping he has some insight for me.

Ericatom1 Your situation sounds awful. It sounds like you know the medical field and how it works. Between your RA and syringomyelia, your are bound to be in a great deal of pain. I hope you are able to find some relief.

2muchpain, I know what you mean about being able to feel the weakness in your legs. Sometimes I am afraid that they are so weak that they will not be able to hold me. However, that has not been when it happens to me - the falling. When my legs are feeling week, one leg may drag or sort of flop back and forth not in line with a normal stride. When your legs burn, do they turn red and have a rash? Mine do. The rash is very tiny spots and the area turns red or salmon.

Chendiah: haven't seen no rash but it feels like someone putting a hot iron up to it. They burn like hell. The last couple days they have been really bad. Pain has been shooting down from mid back into lower back hip, thigh, shin, and top of foot. I haven't even been able to get out of bed more than 10 mins. I can't even go to hospital to see my dad who just had heart surgery. Feels like I got a hot iron on the inside of my leg at shin lvl. Plus all the other bull you get from nerve pain. It's kinda scary because symptoms are getting worse and also having new ones. Just would like to have answers as is to why? Hope we all can come the answers and a way to stop all the damage and pain. And stop all the anxiety and stress.

2muchpain, Ohhhhhh, when you said your shins, I knew exactly what you were talking about! Before they knew what was wrong with me, I told my doctor that the pain was excruciating in my shins. He said that he thought that was an exaggeration. I told him that over the years, three different doctors had told me that I was quiet stoic and that I could take a lot of pain, but if he thought that I was exaggerating, I would keep that in mind. I felt vindicated when they found out what was the matter with me. When my shins are doing that way, I am like you. I stay in bed and moan. My sister-in-law is a RN. She was with me once when my shins started, she told me that my shins looked like I had scalding water poured on them, were so red. I never can tell that they are red. She has been with me other times when it has happened since then, and she said they always turn red. When that is going on with my shins, my thighs get the salmon colored rash. I am so sorry for the pain you are experiencing. It is almost unbearable. I lost so much weight when they were doing like that day after day after day. I was nauseous from the pain and it hurt too bad to get up and fix something. I hope yours do like mine, and get out of that phase of hurting day after day. Mine are mostly good now, except for when I over do. The I really pay.

I know exactly what you are talking about. Dogs woke me up about 3:30am wanting out. It took me 5 minutes to get out of bed. Then I tried to stand up and couldn't. I had to crawl from one and of the house to the other because I was in so much pain. The house is over 1600.sq. feet. Long ways th crawl on all 4s. Waited by back door until they wanted in. Then I had to go. By then pills kicked in enough for me to get off the.floor. Do you drop.stuff? While typing this I already had dropped my phone 3 times. I feel so.weak and my hands have no strengh. It seems like going to the bathroom I am over doing it. Do you ever feel like that? It sux and is scary to wonder just how bad it could get. I know I can't let it keep me down. It's nice to know I'm not alone but also sad others have to suffer to, sorry.

Yes, I drop thing all the time. Sometimes it is several times within an hour and sometimes just a couple of times in a day. I'm sure even twice every day is above average. When I am doing bad, the slightest thing seems monumental. When I am doing good, It is hard to imagine that such small things seemed so overwhelming. My neurologist says that a syrinx moves in a general direction - expanding or shrinking. He said that from day to day however, extreme problems can come and go depending on what has happened to expand the syrinx temporarily. My syrinx is generally smaller than it was two years ago. I still experience short term things like loss of bowel control - thank goodness it has never happened at work. Lifting my three-year-old grandson the day before caused that last time. It has been a while since I had whole body uncontrolled convolution-type movements like I had last night. They are not convulsions. I had missed a dose of gabipinten and so I got a pill down, and in between my bouts of uncontrolled body movements, I managed to put a heating pad on high right where the syrinx is - they soon abated. I also have extreme cramps. At first I tried drinking water, then heat on the affected muscles and then I found the solution. When I put a heating pad on high, and put it right on the syrinx, the cramps stop immediately, no matter which part of my body is cramping. I hope your symptoms ease soon. They are hard to take for very long at a time. Last time I was as bad as you are describing, it went on for a year and a half. I did get better though - so don't give up. I never would have thought during those days, that I could be working full time again - but I am!

Yea it doesn't take much to irritate it. The slightest thing can drop me to the floor. A gallon of milk has dropped me to my knees. Just trying to put it in the fridge. I twisted wrong. The only thing we can do is try and manage the pain and take it as easy as possible.

I get burning in one thigh only ever on the right side and if I touch the skin it is numb and hot. Sometimes I wake up to that area feeling like the muscle being ripped off the bone is the only way I can describe it. I also take gabapentin but haven't gotten much relief from it. Does anyone have any Meds that work for them besides pain meds? I have to be careful what I take because the chemo shots I take for my ra can cause strain on the liver and additional Meds (especially NSAIDs) can cause liver damage if taken in conjunction. Cendriah-I wish I knew less about the field of pain management than I do. Because I know how people in that field judge pain patients it's hard for me becoming one myself. I'm sad to say I'm guilty of judging people too before I were in their shoes...I had no idea. I hate that I was that way but I know it was a mistake.

I'm guilty myself. But I do know lots of people I worked with and 2 family members that do that stuff. I'm glad I no longer work there because pain pills was becoming a big issue there. People buying and selling pain meds like crazy in my department. They were becoming very open about it and that's a cause for the higher ups to drag people in for drug tests. It is zero tolerance there. I needed to be on my meds and most of them was eating them like candy. That's why it's so hard for people who need to get them. Biofreeze helps on some areas for me also.

Ericatom1, I am on the highest dosage of gabaoentin allowed, I am on vimovo for arthritis and I just started zonisamide to help with my constant headaches. It sees to really help (it is meant for epilepsy, but I am using for headaches) I have other medical problems for which I take a variety of medications, but those medications don't address pain, so I won't go there. My first neurologist, who didn't seem to know nearly as much about syringomyelia, went the flexareal and hydracondone sp? route. I started hallucinating and decided that was enough of that. I found a young neurologist who seems to know his stuff, and he has gone this different direction. It is working well enough for me to work - for now. I sure hope you can find something. The Hydrocodone never worked that well for me. It seemed like it just made me not care that I was in soooooo much pain. I am sure those close to you can see the pain in your eyes. Even those I work with recognize my bad days, no matter how much I try to cover it up. They say they can see the pain in my eyes.

2muchpain What is biofreeze? Is it anything like the nerve blocks they do with lanicane and steroids into the afflicted nerves?

Cendriah: it's kinda like ben gay. Except way better. It helps numb the areas you put it on. Any releif I can get to lesson my pain I will give a shot and it does help. Hope your day is better then the last one.

2muchpain, Thanks, today has been much better. Do you need a prescription for biofreeze? If so, is it a narcotic? I just want to know if I need or want to approach my doctor about getting it.

Cendriah I'm on a pretty low dose of gabapentin as it didn't seem to help much. Honestly I'm probably going to go off of it. I used to take flexeril but that stopped working for me for the spasms and I now take baclofen. I've never tried zonisamide for the headaches, which are almost daily. I've tried topamax, lamictal, cymbalta and now the gabapentin. Topamax helped for months and since my headaches were under control my neuro said I could go off. I stayed ok for a few months but then they came back with a vengeance and I tried to go back on topamax but it just didn't work this time. I had a dna test done to show how my body reacts to medications and it turns out I am a rapid metabolizer of certain Meds and I guess my body can recognize them once I'm off and basically render them useless (crazy the tests they can do nowadays). I haven't tried the biofreeze yet but have had things such as lidocaine patches with not much relief so I guess I just ruled it out before a fair shot. I'll have to try it.

Cendriah: no you can buy it otc. I like it a lot. It works great on the over worked areas that pick up the slack to help our out damaged areas. It's added help to get me through the day and night. I'm always willing to try any methods to help control my pain. Glad to year you are a little better today. No scripts needed for biofreeze.

Ericatom1: so sorry you got all that going on in your life. Gabapentin really does food for numbness and tingling. Might need a higher does. It took a while for me to get it where it helped. It also is hard to control pain when you have a lot of different types of issues going on. Sometime it would be easier for people to ask what's not wrong with us, the answer might not take as long. Hope you can find help in controlling your pain.

Ericatom1, The gabapentin didn't do much for me either, until they put me on the mega dose. That is really something about the metabolism test for meds. I had no idea there was such a thing! That is wonderful for people who are in enormous chronic pain. I remember my first major surgery. They were giving morphine shots back then - not pumps. It took one hour for it to work, I had two hours of relief, then it wore off one hour early. So for about 48 hours, I rotated two hours of relief with two hours of excruciating pain. I sure hope you get relief soon.

2muchpain, Thank you so much for the information. I will give them a try.