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Pain Concern
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As yet undiagnosed neuropathic-pain

Hi All,

I have been suffering since June with neuropathic pain, after I had a neck manipulation of C1. Its a long story to why its taken until Dec 2018 for my 1 MRI hour scan, that involves a mis diagnoses.

While im waiting for the scan my symptoms are extreme in that every body part is suffering from burning from head to toe, im also with it suffering temperature dysregulation along with extreme pressure on my nose with twitching on forehead and around eye. As well as a constant pain on the lhs of the base if my skull

It has really caused a massive drop in me being able to do anything. Im currently not able to work.

I spoke to my GP today about the burning and pressure because its partculaly bothering me. Unfortunately I was told because its sensory I will have to wait for the scan.

Is there anything I can take that may reduce this burning pain that im experiencing?

Thanks all

31 Replies
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Ive been looking at getting nerve pain relief supplements theres one called super nerve power, its not cheap but i wonder if it will calm things down. Again my face and everything is burning.

Im hoping eventually it will all settle down because otherwise whats the point im in agony every day 10/10 pain pretty much everyday

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Thanks, did you have temperature dysregulation as well? My temp has got as low as 33.5

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Interesting, i dont seem to be able to sweat anymore since this injury. My temp has also gone the other way during the summer - too hot. Im hoping they can find something to help me after the MRI

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If your pituitary gland or hypothalamus has been effected, then that will effect your thyroid, which helps to regulate metabolism and body temperature as a result. Have you had a complete thyroid work up lately? This is testing all together: TSH, Free T4, Free T3. Central hypothyroidism is thyroid disease caused by malfunction of the pituitary gland or hypothalamus, and is treated with thyroid hormone replacement. I have it, as well as having autoimmune thyroid disease, Hashimoto's. It was caused by an injury.

;-)

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Yes i had all those tests tsh free t4 and t3 all came back good

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How long ago did you have them? Can you share your results and the lab ranges? Many doctors can't diagnose or treat Central Hypothyroidism correctly because they are confused by the results and only focus on the TSH (which is not a thyroid hormone, but comes from the pituitary gland).

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It was around 2 months ago. That those tests were done. I asked for t3 and t4 as well as tsh. Because i researched on it

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Don't be surprised if you fell into the "normal range" but your levels are actually too low, and you were told you are "normal". This happens to people all of the time. It happened to me. Too low in the "normal range" causes symptoms, just as too high in the "normal range" does. I was deathly ill, freezing cold, and I was told I was good and normal, and that my thyroid was fine.

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Unless they can reduce the pain with me which is everywhere including my face / forehead im never going to be able to manage this. Ive been told if nothing shows on mri i will have to have a autonomic nerve test. However the pain is so bad i cant sleep etc. Only thing that makes me want to go on is they find the issue and the nerves calm down otherwise well im toast!

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Fingers crossed that they can get to the bottom of it good luck let us know how you get on

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Will do thanks

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i'm so sorry you are going through this. while you await further diagnosis and (hopefully) medication, have you looked into cbd? i'm not sure if it would help, but what you are going through sounds like one of dante's circles. if you were to try a high mg perhaps it would at least relax you and take the edge off the pain so you could rest. I have localised nerve pain. even in that one area it can be excruciating. I currently use a lower mg of cbd and it makes the pain that much more bearable. hope you find some relief soon.

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Hi yeah i tried some CBD from holland and barrett, i think im sensitive to these things it sent me on a anxiety journey with just one droplet, i dunno if Holland and Barretts is low quality or not. Wasnt a great experience tbh

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sorry to hear that. i'm not familiar with that strain. I did research for about a week before selecting my cbd. if you feel adventurous enough to try again, look for gmo free and third party tested where they provide a link to the actual studies. I understand about the sensitivity. about two years ago I discovered i'm sensitive to humanmade chemicals in food. no more takeaway or junk food :-( the few times I ate it anyway I found myself insomniac (which is horrible with illnesses), itching with hives, a bit mad, and with a massive belly.

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You say: "I have been suffering since June with neuropathic pain, after I had a neck manipulation of C1. "

This sounds like something that needs lawyer advice. Who did the manipulation? Who are the registration board who the person who did the C1 manipulation registered with? You need to speak/complain to the registration board.

You can see an Alexander Teacher who can help you manage some of the symptoms.

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It was a local osteopath that did the manipulation to be honest a lawyer isnt going to fix this. Im struggling to get all the dots joined just to push to it to be investigated by drs, once im better i can look into that

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You are right a lawyer cannot fix an osteopaths error. Neither can the medics route of pain killer. An operation of removing something could make things worse. A lawyer may be able to to get you the costs of putting the osteopath's error right.

You may have a very slight misaligned vertebrae with muscle spasm affecting a number of nerve roots. Dealing with this requires someone with sensitive hands. This is not in a medics training. However, whether this is the case or not requires investigation.

The osteopath's error needs to be investigated by the osteopath's registration board.

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The problem at the moment with that, is getting proof. Yes im in pain and having all these crazy symptoms. However other than giving me tablets! The nhs havent diagnosed anything yet since june

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Hi Futura_2500. This sounds like the very top articulation of C1 where your skull connects to your neck might be misaligned. It's called the atlas. Major nerves run from your brain through that area. When it is misaligned, people will get symptoms just like the ones that you have. The pain that you are having at the back of your skull is likely your occiput being maladjusted.

To diagnose if your atlas is misaligned, you'll need a cervical x-ray that includes the atlas. You need to find a cervical spine specialist who can take the proper x-ray, read it correctly, and treat you. The x-ray is super easy to read. If the joint space around your atlas is not even, then this means that nerves running from your brain through the top of your spine and to all of your body will be impinged. A lawyer won't be of much help, but a good cervical spine specialist will get you on your way back to feeling normal.

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Im guessing the MRI of my head and neck which was ordered by a neuologist should cover the cervical area. Im very reluctant to look for a cervical spine specialist outside of the NHS. Its very hard to know whose is good and who is bad. Its kind of got me where i am now. Do cervical spine specialists exist in the NHS? I could ask my gp to have one

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You are right. It is a nightmare. You are reliant on how good the person who is treating you is. MRI as far as I know do not show muscle spasm. I get treated by a McTimony Chiropractor for my cervical spine injury on the NHS. The McTimony Chiropractor is outside the NHS. I have been receiving this treatment on the NHS since 1994. I my case there is no cure only management.

My experience of the NHS is the required speciality is not available in the NHS but in special circumstances can be paid for by the NHS. You need to look at the NICE guidelines concerning osteopath and chiropractic treatment.

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My biggest worry is what if nothing shows up on the MRI, im kinder hoping something does because i have such a low quality of life at the moment. The Neuologist did say i might need autonomic nerve testing if nothing shows up. Ive been in this way since june :(

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Don't be surprised if nothing shows up on the MRI. The focus should be on the area that was adjusted. If they don't take images from the right angle or with your teeth in the way, they will not be able to view it correctly. Alignment is easily seen on x-ray. Get a second opinion if you are lead astray or don't get the answers that you need.

=

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It is already a 2nd opinion because they took a ct scan of head! Even though i told them the pain was in my base of skull and neck. Unfortunately i dont think the NHS have been too good with me. The Neuologist couldnt understand why i had a CT scan and said it was a waste of time unfortunately

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It's so hard to get good medical treatment sometimes. I hope you can find a good doctor who understands which body part is the problem, who does the right diagnostics and who can read your radiology reports and images properly.

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Thanks yeah never know they may do a open mouth MRI i did explain all my symptoms to the neuologist. 6 months nearly of this.

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I feel your pain about knowing who is good and who is bad. Do you have a way to view online reviews from doctors and to research their medical licenses? Since your injury occurred after your C1 was manipulated, this really sounds like your C1 and C2 are not properly aligned and this area needs to be radiographed to find out.

Unfortunately, a standard MRI will not show what you need to see even if they have taken images of your cervical spine (C1-T1) and your head. The only way to see your atlas alignment is if they have also ordered a coronal view of your C1-C2, and your mouth is open while they are taking the images. I don't think they ever take this view during an MRI because you are not supposed to move an ince.

In order to see if your C1 and C2 are aligned properly, your teeth cannot obstruct the view. The bony images needs to be looked at from the coronal view (taken from the front) with your mouth open, so that your teeth are not obstructing the view of your C1 (atlas) and C2 (axis). If your C1 (atlas) is not properly aligned with C2 (axis), the joint space between part of a structure on your C2 called the "dens" and C1 will not be even on both sides. If the joint space is not even, this means that your C1 and C2 are subluxated or misaligned. Subluxation of any vertebrae causes impingement on the nerves. When the subluxation occurs at the top of the spine at C1-C2, then the nerves that start in your brain and structures below the brain are effected.

MRI is used for analyzing soft tissue (like between vertebrae) or organs and x-rays are used for dense structures like bones. The images have to be taken from the right angle in order to view specific areas. Standard MRI cervical images are taken on the sagittal plane (looking from the side), like this: spineuniverse.com/sites/def...

MRI head images are taken on the sagittal plane and also on the transverse plane (from the top down), like this: media.springernature.com/fu... , or this: svuhradiology.ie/wp-content...

Standard x-ray images are taken from the coronal view of from the front.

This is an image of the view you need to look at your C1-C2. If you look carefully, you can see that this person's C1 and C2 are not aligned properly. The #1 is the dens on C2. The darker grey space on either side is the joint space and you can see that is is not the same on each side.

arcesw.com/radiografias_arc...

Sorry, I really wish I could help more. I'm not in the UK. Can you search the web and directories in your country for atlas and cervical spine specialists? They are non-surgical doctors who focus on the cervical spine. You could ask your GP but they probably don't know of any, but probably just knows of neck surgeons (not who you want to see, unless they will take this x-ray for you).

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Hi Shootingstars, I think it will just be a standard MRI laying down. Was originally going to get the scans privately done but they wanted £2,000 as i am going to be in the machine for an hour. I dont have that kind of money so its being done on the NHS. Not sure where you are in the world? I do think though that the US are ahead of us in terms of diagnosis etc. I do have a pain in the base of my skull and i explained that to the neuologist so hopefully that will be scanned.another wierd symptom it seems my teeth are ultra sensitive

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Hi Futura_2500. Unfortunately, that MRI probably won't tell you much about the C1/C2 axix. You need to the an open mouth coronal x-ray to see what is really going on.

Yep, this sounds even more like your C1-C2 is out of alignment if your teeth are sensitive, as well as the base of your skull (occiput). Everything is connected. When the C1-C2 are misaligned, the jaw and teeth are often also misaligned, and so is the occiput. If you look on that image of the open mouth coronal x-ray, you can see that this person's jaw is out of alignment, too.

Tell the doctor that since C1 was manipulated and then caused you severe pain, you'd like to make sure that your C1 and C2 are aligned properly. Ask for an x-ray of your C1-C2 axis, open mouth, coronal plane.

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Thanks for that i will ask for that after the MRI, it now worries me they going to find nothing. I had to change GP because she decided mental health although i was in physical pain. It wasted months.

My new GP is already saying it could fall into unknown causes. Which means basically in uk it will never get fixed.

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The MRI might not find anything if it's a standard MRI. Good thing you got rid of that other doctor.

If no one ever x-rays you correctly to rule out that your symptoms are not caused by your C1-C2, this misalignment could go on for years. It's not even that hard to fix if you have the right kind of doctor who knows what he's doing.

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