Flare up, symptom imperative?

[KevinB]

I've not been here for some time because I've been mostly OK from TMS stuff over the past couple years.

I'm in the grips of a flare up and I'm just looking for some reassurance. My "go-to" TMS spot has always been left low back and left sciatica type stuff. This flare up began about a week ago. It started as stiffness and some pain in the low back....walking and standing started becoming painful (again, my go-to fear/pain distractor), but I was doing a decent job of not succumbing to it entirely. But then it basically switched sides, moving to the right lower back, buttock, and leg. This was followed by numbness in parts of the "saddle region" and right foot. My right calf muscle has also been twitching violently (though it gets way worse when I focus on it... hmmm....).

Anyhow, I know I have TMS, I've even been diagnosed with it by a medical doctor (Dr. G out in NJ) and a TMS therapist (Liz W. in NYC). But this rapid change to the right and "new" symptoms have me in crazy anxiety and fear. I know about the symptom imperative, but I've not experienced it to this extent, so there's this underlying doubt, the mind saying "well maybe THIS time it IS structural" (though there was no accident or injury leading up to this); and of course a big fear that has always sorta been in the back of mind ever since I had major back issues, prior to knowledge of TMS, was my discovery of CAUDA EQUINA... especially since I have the numbness, which was never really part of my experience with the other leg.

And of course there are at least 4 stressful events leading up to this flare up.... certainly not mere coincidence. I guess I'm just looking for a little bit of support here from people that understand. I try to talk to my wife about it, but she really doesn't get TMS.

Any words of encouragement would be much appreciated.

Kevin

 

[Gigalos]

For me switching sides is proof that it is TMS, but I am not a doctor. Why not give your TMS doctor a call to hear what (s)he has to say??

 

[KevinB]

Good idea! I'm going to call him tomorrow, his office is closed today.

Thanks!

 

[Gigalos]

Great, hope you can share the doc's opinion with us. In the meantime try not to worry too much.

 

[MindBodyPT]

I've not been here for some time because I've been mostly OK from TMS stuff over the past couple years.

I'm in the grips of a flare up and I'm just looking for some reassurance. My "go-to" TMS spot has always been left low back and left sciatica type stuff. This flare up began about a week ago. It started as stiffness and some pain in the low back....walking and standing started becoming painful (again, my go-to fear/pain distractor), but I was doing a decent job of not succumbing to it entirely. But then it basically switched sides, moving to the right lower back, buttock, and leg. This was followed by numbness in parts of the "saddle region" and right foot. My right calf muscle has also been twitching violently (though it gets way worse when I focus on it... hmmm....).

Anyhow, I know I have TMS, I've even been diagnosed with it by a medical doctor (Dr. G out in NJ) and a TMS therapist (Liz W. in NYC). But this rapid change to the right and "new" symptoms have me in crazy anxiety and fear. I know about the symptom imperative, but I've not experienced it to this extent, so there's this underlying doubt, the mind saying "well maybe THIS time it IS structural" (though there was no accident or injury leading up to this); and of course a big fear that has always sorta been in the back of mind ever since I had major back issues, prior to knowledge of TMS, was my discovery of CAUDA EQUINA... especially since I have the numbness, which was never really part of my experience with the other leg.

And of course there are at least 4 stressful events leading up to this flare up.... certainly not mere coincidence. I guess I'm just looking for a little bit of support here from people that understand. I try to talk to my wife about it, but she really doesn't get TMS.

Any words of encouragement would be much appreciated.

Kevin

Hi Kevin,

Hope you got in to see the doctor to get some reassurance! Just some clarification that should help re: cauda equina- it is scary but VERY rare (I think I once read it's literally 1 in 30,000 back pain patients!), and as a PT i've seen it occur literally once in 6 years. The "saddle anesthesia" spoken of is significant, persistent and severe and is also accompanied by significant bowel and bladder dysfunction. If you have all these things, please go to the ER and get treatment! If not, and it sounds like not in your case, it's not an emergency and is highly likely to be TMS. You could easily have numbness/altered sensation in your "saddle" region from TMS, but good idea to check just in case...your doctor may not even recommend any imaging given that you don't have the red flags for it And you have some good evidence that it's likely to be TMS- it switched sides, and is worse when you pay attention to it!

 

[KevinB]

Hi Kevin,

Hope you got in to see the doctor to get some reassurance! Just some clarification that should help re: cauda equina- it is scary but VERY rare (I think I once read it's literally 1 in 30,000 back pain patients!), and as a PT i've seen it occur literally once in 6 years. The "saddle anesthesia" spoken of is significant, persistent and severe and is also accompanied by significant bowel and bladder dysfunction. If you have all these things, please go to the ER and get treatment! If not, and it sounds like not in your case, it's not an emergency and is highly likely to be TMS. You could easily have numbness/altered sensation in your "saddle" region from TMS, but good idea to check just in case...your doctor may not even recommend any imaging given that you don't have the red flags for it And you have some good evidence that it's likely to be TMS- it switched sides, and is worse when you pay attention to it!

Thanks for the words of encouragement and no, I don't have any of those severe symptoms. The numbness is not object numbness, I can still feel pinches and whatnot, and is only in a few parts of the right saddle region, nothing on the left. I have noticed some slight changes in both my bowel and bladder functions, but those seem to be more due to the anxiety I've been experiencing the past few days, which does seem to be improving a bit.... but walking is very difficult and my legs feel very weak, especially the right calf which seems to not really be working. That is, up until last night I was able to go up on my tiptoes on one leg, but now I can't, on either foot (I can shakily with both feet together). But honestly I think that beyond that being a TMS symptom, I had been so obsessively checking my calves for the past 2-3 days that they might also just be tired and sore....
Anyhow, I'm doing my best to keep off Dr. Google and think "emotionally".... it's hard this time for sure, I think mainly because I thought I had it licked... I'm still going to call my TMS doctor tomorrow to get his take, but I really want to avoid seeing a 'regular' doctor because I'm afraid they'll just reintroduce all the medical BS that I've worked so hard to unlearn, as Dr. Sarno says.

 

[KevinB]

Great, hope you can share the doc's opinion with us. In the meantime try not to worry too much.

TMS Doc called me back last Friday, after I detailed all my symptoms and fears he asked “so what’s going on in your life”. We chatted for a while, I asked if any of my symptoms were worrisome, he said no, this was very clearly a flare up. Talking with him certainly helped, at least to the extent that I know I don’t have an emergency.... but because my mind has decided to use such new and frightening symptoms, I’m struggling with just getting on with life. The anxiety, however, is lessening daily, so I guess I’m on the right track.

 

[CarboNeVo]

Yep i get this numbness when stressed out, it's basically for me a signal that something is "too stressful" for me and I need to slow down, get my self out of that "unconsciously stressed" state. What helps is slowing down and finding a perfect distraction, it disappears pretty rapidly actually.
It's actually the only TMS symptom I have right now which comes only during relapses, feels like a sciatica that goes from my butt down my leg.
Tramadol helps perfectly with this but it doesnt work for everybody as I noticed

 

[KevinB]

Even though I talked to TMS doc over the phone, I’m still very worried about these symptoms.... it’s really difficult to walk, not so much pain, but massive weakness in the legs. Neither of my calves seems to be working, so it’s very hard to walk.... also tingling in the feet. I know Nobody here can give medical advice, so my question is: should I just keep reminding myself that I spoke with a medical doctor and he said it was a TMS attack? There’s worry that I have somehow done some nerve damage.... but I really fear going to a traditional doctor because I basically know they’ll push for what they always push for, shots, surgery, etc. I really don’t want to get scared out of my TMS diagnosis.

 

[Gigalos]

Yes, write it down a piece of paper, copy it and hang it around the house. 'I talked extensively with a real medical doctor and he says I am basically fine'. Try to lose that fear, as it is keeping you in a vicious circle where fear drives your fear-creating symptoms. It might also help to journal a bit about the things that led up to this episode.

 

[KevinB]

Thanks for the encouraging words and good advice. Dr. Gwozdz offered a similar method, to keep repeating over and over, several times an hour if need be, that it’s not structural, it’s from my mind because I’m conflicted over X.

 

[Paigeee]

Even though I talked to TMS doc over the phone, I’m still very worried about these symptoms.... it’s really difficult to walk, not so much pain, but massive weakness in the legs. Neither of my calves seems to be working, so it’s very hard to walk.... also tingling in the feet. I know Nobody here can give medical advice, so my question is: should I just keep reminding myself that I spoke with a medical doctor and he said it was a TMS attack? There’s worry that I have somehow done some nerve damage.... but I really fear going to a traditional doctor because I basically know they’ll push for what they always push for, shots, surgery, etc. I really don’t want to get scared out of my TMS diagnosis.

No matter how hard it is (trust me, I know) you have to just keep telling yourself that what you're having is simply a TMS flare-up. In my opinion, it would be the wrong move to go to a traditional doctor. Your TMS doctor says it's TMS (and they would know!), and that's all the info you need. Going to a normal doctor could make the symptoms worse because they would most likely push for extensive testing when you really don't even need it, thus creating more anxiety around your symptoms.

You WILL be healed of this, regardless of how you feel right now.

 

[KevinB]

So I called my TMS doctor again since my symptoms are not improving. I really detailed all of the symptoms to him and he said I should see a neurologist, just to be safe. I expressed that I fear it’ll undo all my TMS knowledge, but he said to have them send any results to him and he will interpret them. That helped ease the panic. Basically he said it’s a good idea to know what’s up, to be on the safe side. In other words, if it’s just the usual findings like disk or narrowing, then we can move forward with even more confidence that it’s TMS. And if it is actually something structural, then we will at least know and can take the appropriate steps to deal with it.

I’m actually feeling a bit better because at least I’m doing something... it’s been nearly a month and I’m getting antsy. I think ruling out any “real” issue would help me to fully integrate TMS; or the other side, I’d rather know than not if it’s something structural or malignant.

I’ll keep updating through this journey.

 

[KevinB]

Just came back from seeing neurologist who order an “urgent” MRI for possible cauda equina.... ugh. I have the MRI on Thursday. I’m a bit frightened, but still gonna have results sent to my TMS doc before making any decisions. I also have a follow up with neurologist next Tuesday.

This sucks.

 

[Gigalos]

Waiting sucks. Try to distract yourself, as worrying about the outcome doesn't help you in any way... easier said than done, but try to remind yourself of that during the next days...

 

[KevinB]

Waiting sucks. Try to distract yourself, as worrying about the outcome doesn't help you in any way... easier said than done, but try to remind yourself of that during the next days...

Thanks Gigalos, it’s nice to have this supportive online community. And even though I’m a bit scared, I’m also feeling some relief because no matter what the results, I’ll be better equipped to move toward resolve. That is, if it is cauda equina, that’d a clear cut medical thing and I’ll do the necessary operation. If it’s not, and just the other typical stuff, I’ll know for sure it’s TMS. Also grateful for Dr. Gwozdz, TMS doctor, he’s been incredibly kind and supportive through all this.

 

[KevinB]

Thanks Gigalos, it’s nice to have this supportive online community. And even though I’m a bit scared, I’m also feeling some relief because no matter what the results, I’ll be better equipped to move toward resolve. That is, if it is cauda equina, that’d a clear cut medical thing and I’ll do the necessary operation. If it’s not, and just the other typical stuff, I’ll know for sure it’s TMS. Also grateful for Dr. Gwozdz, TMS doctor, he’s been incredibly kind and supportive through all this.

Had the MRI, had report sent to TMS doc, just off phone with him, it’s TMS. He said the report mentions some changes compared to an MRI 3 years ago, but nothing he hadn’t seen a million times before, and def not cauda equina syndrome. I def feel relieved, but also pissed at my mind for deceiving me so hard.... oh well, now back to acceptance of TMS diagnosis.

 

[Hamed]

Had the MRI, had report sent to TMS doc, just off phone with him, it’s TMS. He said the report mentions some changes compared to an MRI 3 years ago, but nothing he hadn’t seen a million times before, and def not cauda equina syndrome. I def feel relieved, but also pissed at my mind for deceiving me so hard.... oh well, now back to acceptance of TMS diagnosis.

Kevin, I'm so pumped for you! Our stories and symptoms are so similar, and I'm going through a rough patch myself (nothing major but enough to frighten me about things getting slowly worse). I know my own flare up has everything to do with starting a new job and the inherent stress therein. But hearing that your latest nasty flare up is confirmed TMS fortifies my confidence in the diagnosis I received 4 months ago. Just out of curiosity, were the changes in your MRI new findings or worsening of original findings or perhaps even an improvement on your scan from 3 years ago? In any case, so happy for you man...looking forward to your eventual success story.

 

[KevinB]

Kevin, I'm so pumped for you! Our stories and symptoms are so similar, and I'm going through a rough patch myself (nothing major but enough to frighten me about things getting slowly worse). I know my own flare up has everything to do with starting a new job and the inherent stress therein. But hearing that your latest nasty flare up is confirmed TMS fortifies my confidence in the diagnosis I received 4 months ago. Just out of curiosity, were the changes in your MRI new findings or worsening of original findings or perhaps even an improvement on your scan from 3 years ago? In any case, so happy for you man...looking forward to your eventual success story.

Thanks! The flare ups suck because in my experience now, the mind really f*** with you to make you think it’s something new.

Regarding the changes, they weren’t improvements from previous MRI, but he didn’t go into detail and I didn’t ask him to. He briefly mentioned herniations and stenosis, but didn’t say where, which side, or how extreme. The sole aim of the MRI was to rule out an emergency, namely cauda equina, or any other maniglant type situation, like cancer. Any knowledge beyond that would likely retard TMS recovery.

The entire thing was sorta tricky. He had formerly diagnosed me about 1.5 years ago, but I was freaked out by the new symptoms, I think he just sorta needed to be sure. But he doesn’t write MRI referrals, so I had to go to a regular neurologist, who of course was all about the body only. He wrote the referral for the MRI. I got it and they automatically send results to the referring doctor, but you can elect to have results sent to other doctors as well. So I had them sent to Dr Gwozdz and skipped on follow up neurologist appointment that was scheduled for today. And thank god! Who knows what kind of fear the neurologist would’ve instilled in me.

Anyhow, Dr G offered to send me over the MRI report, but I denied it and he said “good, that’s the right TMS attitude to take”.

Sorry to hear you’re going through a rough patch. But we should both be grateful to have been diagnosed by an actual TMS doctor, not everyone has that option. Who’s your TMS doc?

 

[Hamed]

Thanks! The flare ups suck because in my experience now, the mind really f*** with you to make you think it’s something new.

Regarding the changes, they weren’t improvements from previous MRI, but he didn’t go into detail and I didn’t ask him to. He briefly mentioned herniations and stenosis, but didn’t say where, which side, or how extreme. The sole aim of the MRI was to rule out an emergency, namely cauda equina, or any other maniglant type situation, like cancer. Any knowledge beyond that would likely retard TMS recovery.

The entire thing was sorta tricky. He had formerly diagnosed me about 1.5 years ago, but I was freaked out by the new symptoms, I think he just sorta needed to be sure. But he doesn’t write MRI referrals, so I had to go to a regular neurologist, who of course was all about the body only. He wrote the referral for the MRI. I got it and they automatically send results to the referring doctor, but you can elect to have results sent to other doctors as well. So I had them sent to Dr Gwozdz and skipped on follow up neurologist appointment that was scheduled for today. And thank god! Who knows what kind of fear the neurologist would’ve instilled in me.

Anyhow, Dr G offered to send me over the MRI report, but I denied it and he said “good, that’s the right TMS attitude to take”.

Sorry to hear you’re going through a rough patch. But we should both be grateful to have been diagnosed by an actual TMS doctor, not everyone has that option. Who’s your TMS doc?

I couldn't agree more. I was lucky enough to see Dr. Andrea Leonard-Segal in Washington, D.C. Dr. Segal trained with Dr. Sarno and is a highly regarded Rheumatologist who also contributed to Dr. Sarno's "The Divided Mind" book. She looked at my imaging and looked me straight in the eye and said the report was boring stuff. No more dangerous than the gray hairs in my beard. First, she did a very thorough physical exam and declared my reflexes perfect and confirmed the TMS diagnosis. Then she sat with me for a very long time taking my personal history and helping me understand why I was in pain. She exudes compassion and confidence, and I have recommended her many times since seeing her in January. It's an expensive visit, but worth every penny. Here's her information for anyone interested in seeing her (she's located in DC right down the street from George Washington University Hospital):

https://www.gwcim.com/people/dr-andrea-leonard-segal-md/ (Andrea Leonard-Segal, MD – GW Center For Integrative Medicine)

All that being said, the diagnosis is only half the battle, and it's the easy half. The rest can only come from within. My tools are first and foremost, mindfulness ( via somatic tracking and self compassion), outcome independence to keep myself moving forward in my healing, and of course the hardest and probably most important piece of the puzzle, confidence in the diagnosis and confidence in the strength of my body and my mind. I've made leaps and bounds from where I was just a year ago. Alan Gordon wrote on this site that what we have is a fear problem, not a pain problem, and he's so right. I don't feel acute pain anymore, but I often feel acute fear when the pain volume starts increasing or is momentarily sharp. Three years ago, even a sharp pain flew entirely under the radar with me. These days, I shift the wrong way in my chair, feel a twinge and it's off to the fear races. So that's my battle as I continue to progress...me vs. fear. But I know I'll win because any game we play against ourselves is always a win.