Blood Tests & Inflammatory Markers

Hey All,
I've been struggling to figure out the best way forward with my TMS. It's safe to say my problem is largely inflammatory in nature. A consistent dose of Prednisone combined with an epidural has once again bolstered this theory, resulting in about an 85% reduction in my low back pain. For some reason this doesn't deter the surgeons who think a spinal fusion is the best option for me, despite my confusion about how inflammation can be removed with a scalpel.

Unfortunately, as anyone familiar with corticosteroids knows all too well that this is a bargain with the Devil. As my tolerance increases, its efficacy begins to decrease, and sometimes (like now), it stops working very abruptly. A week & a half ago, I was making plans to play softball, while today I'm looking for a cane to help me walk. Now I'm left with all of the side effects & none of the benefits. Pretty much all of these side effects can trigger TMS (irritability, insomnia, etc.). The neurological symptoms (burning/pins & needles in calf & foot) persist regardless, but that's more irritating than debilitating. At its worst, the 'pinched nerve' starts to feel like I'm getting an electrical shock from certain movements. My standard response these days is "I can do anything as long as it doesn't involve sitting, standing, or walking".

The pain & steroids keep me angry - all the time. This constant state of rage no doubt makes the pain worse. As far as the root causes - does the pain make me angry or does the anger cause the pain? The former - without question. Whether or not the TMS is responsible for the inflammation vs. the underlying autoimmune disease? That depends on who you ask, but what I'm trying to learn here today is how often TMS patients have blood tests that look like mine...where all of the inflammatory markers are off the charts (Erythrocyte Sedimentation Rate (ESR), CRP, etc.). All of the values that cause my doctors to blame on 'active Crohn's disease'.

Is there anyone on here that's managed to reverse this type of trend by treating TMS? All of the other meds I've tried to manage the Crohn's have failed at this point and it's becoming harder and harder to keep the depression at bay. Add to that the fact that every recommended treatment is impossible to actually get because, well, health insurance in this country is pretty much a giant scam...well let's just say that spending half my day fighting them for every nickel...doesn't do much to reduce stress. Any stories that can give me just a little hope would be welcomed.

 

Hi, I understand your anger, you feel helpless, that’s what I read between the lines. Now, I don’t know what the official position is, whether TMS also includes inflammation. I think I read somewhere that there are diseases which are both, they are diseases where something is wrong with the body and a psychological component is present. The question might be: what comes first? I don’t know.
However, I want to tell you about a friend of mine. She has Crohn’s disease for many years. She refused to take the medicine doctors gave her, because she felt that with psychological work and a diet she would be able to control it. And she did that. She told me it took her 3 years (maybe she took some cortisone in that time, I don’t know) and then she saw the difference. She is living a normal life now without medicine. I know that she doesn’t eat things with much sugar and also no corn (I think this is something individual). And most important is that she is really very much aware of her psyche and how she is doing. She sometimes says that when she was not good to herself, didn’t care enough about herself, her bowel will tell her. I don’t know about her inflammation markers. She thinks Crohn’s disease is a psychosomatic disease, only that never totally will go away. But, that with the right attitude you are be able to control it and its consequences.
What I think is very important now is that you don’t beat yourself up for being in this situation. Sometimes it is just bad luck. It is more important how you react to the situation than at once wanting to change it. So, take care for yourself!

 

When you look at my medical history, a clear pattern that shows a correlation between serious flare-ups and emotional trauma. When I was diagnosed back in the early '80s, my doctors never considered stress or really even diet as contributing factors, though the idea that stress can exacerbate the symptoms isn't new. They just focused on keeping me from losing weight and pumped me full of steroids to control the inflammation, which stunted my growth and likely created more problems than it solved. They just didn't have as many options as they do today.

Dr. Sarno believed Crohn's Disease was another "TMS equivalent". This was the one area in which he & I did not agree (I was a patient of his & he 'cured' me of back pain in my early 20s). I just couldn't wrap my brain around the idea that all of a sudden, despite a generally happy/normal childhood, that I had so much repressed stress/rage at age 6 to develop such a serious MBS. I also began grinding my teeth around the same time, but that I can believe was a stress reaction to the Crohn's diagnosis. It hasn't really moved the needle at all - obsessing over the "which came first, the chicken or the egg" argument, but it might be relevant that many of the medications I've been taking for years (and the autoimmune disease itself) combine to undermine the body's natural defenses against stress. It would make sense that this would leave me more susceptible to MBS. Simply being diagnosed with a chronic, incurable disease as a toddler had to have an impact, even if it didn't really begin to manifest itself with TMS symptoms until I was much older. Crohn's Disease patients are something like 85% more likely to suffer from some form of depression/anxiety, and really everything about it represents a fertile breeding ground for TMS. As long as my adrenal glands, hormones, immune system, etc. are all messed up, it seems impossible to reach a place where I can maintain any consistency with treatments.

Where I'm stuck however is on how to restore my confidence in the ability of TMS 'treatments' to have an impact when so many things are out of whack because of the inflammation. That feeling of really not being able to see any clear path back to some semblance of a normal life is what keeps me 'trapped'. All of the activities I used to consider my stress relievers are no longer possible. I'm just really feeling it now because of the steroids - so no matter what I have to find a way to reduce some of the anger, but somewhere along the line I decided being angry was better than being depressed. I'm still not sure it's not...

 

Well, this new article from Invisibilia must be meant for you, thanks to @fern

https://www.npr.org/sections/health-shots/2019/03/09/700823481/invisibilia-for-some-teens-with-debilitating-pain-the-treatment-is-more-pain (Invisibilia: For Some Teens With Debilitating Pain, The Treatment Is More Pain)

 

Great article Jan!
Eightball776, what you describe is that your feelings and your health are a mess. I would say it is not easy to restore health, maybe it is easier to restore clarity of your feelings. And also your expectations. I am very sure that you can heal and have a wonderful life with and not despite your diagnoses. But you need to take small steps and focus on what you can do now. It is e.g. important to have something in one’s life that really is enjoyable. Something that gives you satisfaction. And don’t focus on what you cannot do, focus on what you can do. Maybe also councelling could be relevant for you. Regarding all the medicine you took over the years, I don’t believe that there are too many irreversible side effects. Steroids have an effect, however, focus on to manage these side effects.
Regarding the chicken and egg problem. Let’s suppose that Crohn’s disease is not psychosomatic. Then, it is more relevant to think about how to deal with it then trying to find the miracle medicine or treatment. To me it sounds that you have to shift your perspective. It’s hard, I know, I also have to do it. But it makes me feel much more active and in charge of what is happening.

 

The main reason I started this thread, I think, was to see how common it is for those suffering from TMS to also have such a difficult time maintaining 'normal' levels on so many of these blood tests, especially the inflammatory markers, the CRP & ESR.

 

Hey, @eightball776 - I would also recommend "When The Body Says No" by Gabor Mate, MD. He explains the physiology of what he calls "stress disorder" but he's really talking about the stress of emotional repression. He may convince you that many physiological changes will occur thanks to this stress. He offers a pretty radical source to explain not just chronic conditions, but auto-immune conditions and cancer, as well. It blew my damn mind wide open.

 

Thanks for the recommendation. I just borrowed the audio book. I have no doubt there is a stress disorder that's making everything worse... I do doubt that it is the cause, which might be a big reason why I have so much trouble defeating it only with psychological tools. It's the most vicious of cycles. The trouble I have is disconnecting it from the chronic autoimmune condition I developed as a toddler.... I was a much tougher kid.

no origin

 

After so many years(8 years) I still beat up myself that I agree that my derm would put me on longterm antibiotics for me acne. It seems so foolish! I have teeth/jaw and stomach pain since then. Teeth pain is weird, but I'm fairly sure that stomach pain is because of antibiotics. But gastro can't find anything! I had colonoscopy, gastroscopy, plenty of other tests, and the only thing they found was SIBO but whatever I tried to do physically it never coresponded, I just feel dull pain 24/h.
How could I forgive myself for 'bringing this on'? I feel like I spend my youth on doctors appointments and trying various medicines, because of my foolishness. How to forgive myself? I still struggle with those things, even if I feel better after many months of TMS approach, but it did nothing to my symptoms. Not Alan Gordon program, not SEP program. I feel maybe it's because I still can't believe it's 100% mental/emotional and not because of consumptions of those damn antibiotics.

 

I highly recommend the program at http://anewhealingcenter.com/ (The process of becoming internally healthy.), they have helped a lot of patients with auto immune issues heal themselves. I did this program several years after I recovered from chronic pain thanks for the work of Dr. Sarno, when I developed chronic sinus issues that I was unable to resolve myself. The program really changed my life and changed the way that I experience emotions and the world, I can’t recommend it highly enough.

 

I can really relate to this. When it comes to chronic, incurable illnesses like Crohn's Disease, with a multitude of symptoms that impact every individual differently, there are always going to be a ton of people who claim remission from all kinds of treatments from poop-transplants (this is actually a thing), ayahuasca, to special diets and sketchy snake-oil type tonics sold via MLM. I had a close friend and respected naturopathic physician insist on the efficacy of hydrotherapy recently, and I wanted to reach through the phone & choke her. I mean, sure, I've been needlessly suffering for all of these years when the answer was right in my bathtub the whole time. Seriously though, while there's no doubt lifestyle choices and stress play a major role in CD & all autoimmune disorders, a gluten-free diet is not going to roll back this out-of-control civil war waged by my own immune system. Healthy habits can extend periods of remission and provide protection from flare-ups. Yet when the disease is already 'angry', and is kind of like a giant snowball rolling down a hill in one of those old cartoons, no amount of Turmeric or expensive supplements are going to do squat.

Here's the rub though... the tiniest notion buried in my subconscious that I could have prevented years of terrible suffering and the destruction of most every life goal I've ever had with healthier habits has to be a major source of self-flagellation & kindling + fuel for TMS. I don't think I am one of those people that spends a lot of time feeling sorry for myself, but anyone diagnosed with a chronic disease as a toddler is going to be angry about it, and victim-hood is another significant component of TMS. Allowing for even the tiniest possibility that I have had 100% control of this entire process, rational or not, and for whatever reason was too 'lazy' to exert this control, has to continue to drive the part of this process that is driven by TMS.

 

Could the tooth pain be related to TMJ & grinding in your sleep? I still break up my teeth (also much easier to do because of lost enamel, another happy side effect of Prednisone) on a regular basis because of the grinding.

 

I am very new to learning about TMS. JMO, I think the anger is adding to the pain. Hope you find what helps. I am not a medication person, therefore, I had to find other alternatives for my muscle tension/sciatica pain in my right hip/down my leg. I notice its better when I am relaxed (as much as I can be). So glad to come across TMS (reading a book). It makes a LOT of sense. It's putting pieces of a puzzle together that I felt was missing. Doctors could not figure out what was going on with me. A Neuro said MS - in my opinion, they left out the T.

 

I have to check out the program. I have chronic sinus pain. My head, face, jaw feels so tensed up and tight. I had sinus surgery about 6-7 years ago and had problems ever since. Looking back, I do not feel I needed the surgery..I was going through a very difficult time in my life and was looking for ANYTHING to help. One doc wanted to put me on allergic shots but I declined.. glad I did. I was also dx with an auto immune issue which I don't feel I have. One dr I saw stated "I am not sure why Neuro are so quick to dx patients with MS).

 

Hi. I would like to share my little story, I have systemic lupus erythematosus. To be honest, it's pure luck that I was diagnosed with it at all. At the age of 12, I was told that I urgently needed to remove the tonsils, and then I was diagnosed with this. I also felt hellish pain all the time. All the joints, especially the limbs, were terribly inflamed, swollen hands and feet, and it was hard to walk. I also took prednisolone, which resulted in a very strong gain in weight, as well as went through a real war with hormones. I was really very lucky that this was discovered at a very early stage of development. After 13 years, I feel consistently well, periodically checked by a doctor. I hope you get some help, too.

 

MODERATOR EDIT: THIS POSTER MIGHT BE A SPAMMER. THE CONTENTS OF THIS AND THE PRIOR POST CONTRADICT OUR PURPOSE AND MESSAGE.

I feel consistently well, periodically checked by a doctor. Never stop going to doctors, never stop looking for good specialists, this is very important. I understand that it is very difficult to remain calm, I just like you were very irritable and angry, the pain is maddening if you submit to it. The only thing I can recommend is to consult with doctors all the time, not one so the other. Do blood tests as often as possible, there are a lot of qualified phlebotomists. There are different phlebotomist centers and laboratories, as well as sites that can help you to find good specialists near your place of residence. By the way it is a great profession in my opinion. There was a girl in the hospital with me who decided to become a phlebotomist, and she is one of the best specialists I know, by the way, she studied here (moderator edit: link removed - could be spam). She's one of the people I trust very much, even though I've been terrified of syringes and needles since I was a child. Be strong, don't give up! I hope you get some help, too.