• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Brain inflammation?

Messages
20
Hi everyone. So I have had these symptoms a while. Sometimes I have these extra symptoms like my ears feels blocked (I have had tinnitus since I was a child ) my head feels slight pressure. My neck is stiff and sore and my right shoulder is always hunched up and at times sore. I get this feeling my head at base of skull could be inflammation related. My dr said my inflammation markers are up . How could I approach the nhs about a referral for an mri and is that even any use ? Drs have been usless to be honest . I know that's a common comment to see lol
 

rosamary

Senior Member
Messages
131
So has you dr made any attempt to find out whether your inflammation markers are up temporarily or if it's an ongoing problem?
 
Messages
20
None at all. It was 41 last 2 times my esr was checked. They babbled on about it should be 12 or lower but it's not 100 so they not overly worried. Same fob offs
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
So I have had these symptoms a while. Sometimes I have these extra symptoms like my ears feels blocked (I have had tinnitus since I was a child ) my head feels slight pressure. My neck is stiff and sore and my right shoulder is always hunched up and at times sore. I get this feeling my head at base of skull could be inflammation related.

Hi Colette- I'm sorry I can't help with a good way to approach the nhs. My understanding of brain inflammation is that it's hard to detect. I also have trouble with my ears and I found out it was caused by blocked ustation tubes, caused by inflammation. I also have the neck stiffness/tension, head pressure and mild tinnitus on occasion as well.

There is a cfs researcher named Dr. Jarred Younger, that is very involved with cfs and brain inflammation. Here is a link to a video interview he did about cfs and brain inflammation. There is also a full transcript of the interview, with many different links to different sections of it. So if one section peaks your interest, you can just click on it.:) LINK

Jim
 
Messages
20
Thanks for the link I will check it out. It's a strange thing isn't it. Should I ask about blocked tubes I'm due in on Saturday I am just wanting referred on to someone other than a gp. I see a different gp most times as the practice is so big and busy. Told them last time if I had the money I'd go private lol
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Should I ask about blocked tubes I'm due in on Saturday I am just wanting referred on to someone other than a gp.

I don't think it can hurt to ask about the blocked ustation tubes. Maybe they can make a connection to inflammation. I was told by an ear doctor that my ustation tube in my right ear was blocked from a birth defect.

Then years later as my cfs and inflammation got worse, my left ear ustaion tube became blocked! A VERY late birth defect I guess.;) Best of luck with your appmt!

Jim
 

charles shepherd

Senior Member
Messages
2,239
Basic information from the ME Association on CRP and ESR (inflammatory marker) blood tests in ME/CFS:

The CRP (C-Reactive Protein) blood test is a very useful non specific marker for infection or inflammation in the body

If the level is raised, it suggests that there is some form of infection or inflammation occurring somewhere in the body - even though there may not be any obvious symptoms or signs that would help to demonstrate the location in the body where this is occurring

The test is not therefore diagnostic of any particular infection or inflammation - as there are many possible explanations for a raised CRP level ranging from specific infections through to inflammatory bowel disease, arthritis, and autoimmune diseases such as lupus/SLE

The level can also be raised in the later stages of pregnancy, when taking the contraceptive pill or HRT, and with obesity

This test, or a similar one called the ESR (erythrocyte sedimentation rate), should ALWAYS form part of the raft of blood tests that are checked when a diagnosis of ME/CFS is being made or considered

The CRP test rises and falls faster than the ESR

In the case of ME/CFS, both the CRP and ESR test results should be within normal limits - but there are some circumstances (eg a recent infection) where it might be raised

If the level is slightly raised, the test will probably be repeated

If the level remains raised, or is significantly raised, this should lead to a thorough re-evaluation of the clinical symptoms and some further investigations to try and find the cause.

I assume from what you are saying that consideration has been given to conditions that are sometimes misdiagnosed as ME/CFS, and which do cause an elevation of the CRP level - lupus/SLE for example.

Where the CRP level remains persistently raised, and the GP cannot find an explanation, referral to a hospital specialist will probably be necessary.

The use of ESR and CRP tests in ME/CFS are described in the Investigation section of the 2017 MEA purple book:

http://www.meassociation.org.uk/201...earch-masterwork-now-available-19-april-2017/

More detailed information on the CRP test here:
http://labtestsonline.org.uk/understanding/analytes/crp/tab/test/

More info on ESR test here:
http://labtestsonline.org.uk/understanding/analytes/esr/tab/test/

Dr Charles Shepherd
Hon Medical Adviser MEA
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Hi everyone. So I have had these symptoms a while. Sometimes I have these extra symptoms like my ears feels blocked (I have had tinnitus since I was a child ) my head feels slight pressure. My neck is stiff and sore and my right shoulder is always hunched up and at times sore. I get this feeling my head at base of skull could be inflammation related. My dr said my inflammation markers are up . How could I approach the nhs about a referral for an mri and is that even any use ? Drs have been usless to be honest . I know that's a common comment to see lol

Brain inflammation does not feel like inflammation - that is to say the brain does not feel 'sore'. And there is no inflammation in the usual sense in the brain in ME. An ESR of 41 might indicate something is wrong, but it is unlikely to indicate a brain problem. So that does not seem a likely explanation for what you describe. Symptoms in the ears are likely to be coming from the ears themselves. An ENT opinion might be relevant - with an audiogram to see if the tinnitus is related to a hearing defect.
 

duncan

Senior Member
Messages
2,240
@colette1984 , one option is to have a lumbar puncture to check variables like elevated proteins or pleocytosis. This is not a pleasant procedure, though. And even if you could demonstrate high proteins or pleocytosis, I'm not sure that proves brain inflammation.
 

charles shepherd

Senior Member
Messages
2,239
@colette1984 , one option is to have a lumbar puncture to check variables like elevated proteins or pleocytosis. This is not a pleasant procedure, though. And even if you could demonstrate high proteins or pleocytosis, I'm not sure that proves brain inflammation.

We clearly don't have all the information here from history, examination and results of any investigations that a doctor requires to make use of in their clinical judgement when it comes to deciding what is wrong and how to manage what is wrong

From what we do know, there does not appear to be any indication to be doing investigations like brain scans or lumbar punctures to look for evidence of brain inflammation

I think Colette needs to go back to the doctor to sort out why (if there is a reason) her inflammatory markers are raised and (as Jonathan says) go to the ENT clinic if the GP cannot sort out the problem with the ears…….

CS
 

duncan

Senior Member
Messages
2,240
We clearly don't have all the information here from history, examination and results of any investigations that a doctor requires to make use of in their clinical judgement when it comes to deciding what is wrong and how to manage what is wrong
Agreed.

From what we do know, there does not appear to be any indication to be doing investigations like brain scans or lumbar punctures to look for evidence of brain inflammation
Regardless, checking CSF is an option, as is imaging technology, that a patient may wish to consider in consultation with their physician.

I think Colette needs to go back to the doctor to sort out why (if there is a reason) her inflammatory markers are raised and (as Jonathan says) go to the ENT clinic if the GP cannot sort out the problem with the ears…….
Agreed.
 
Messages
49
Location
GREECE
hi, I did not read all this thread in detail. I would definitely do an MRI of brain and MRI of upper neck to be sure and double check there is no Chiari 1 there. I read that herniation of tonsils of the brain of even 3mm can cause the symptoms you describe. I got a proper diagnosis (i have Chiari 1) only after MRI of upper neck. I have an MRI of my brain in my files that does not show my problem! Hope there is nothing serious and that u ll be fine soon.
 

Hip

Senior Member
Messages
17,824
Brain inflammation does not feel like inflammation - that is to say the brain does not feel 'sore'. And there is no inflammation in the usual sense in the brain in ME.

I appreciate that the brain has no internal sensors of pain or physical sensation, etc, but some ME/CFS patients like myself, @colette1984 and others report a dull mild inflammatory feeling at the back of the head, just above the nape, at the base of the skull.

I am intrigued by this sensation, and what might cause it, because in principle you should not be able to feel inflammation in the brain.

(I also have an inflammatory feeling in the forehead area, but this I think can put down to chronic nasal and sinus inflammation that I have — nothing directly to do with the brain.)
 

Daffodil

Senior Member
Messages
5,875
Hi everyone. So I have had these symptoms a while. Sometimes I have these extra symptoms like my ears feels blocked (I have had tinnitus since I was a child ) my head feels slight pressure. My neck is stiff and sore and my right shoulder is always hunched up and at times sore. I get this feeling my head at base of skull could be inflammation related. My dr said my inflammation markers are up . How could I approach the nhs about a referral for an mri and is that even any use ? Drs have been usless to be honest . I know that's a common comment to see lol
Most CFS patients have this..I have the exact same symptoms and have had them for 24 yrs. I believe it comes from bacterial translocation from the gut and maybe other infections.
I got treated for Lyme and other bacterial overgrowth in my gut and it got a little better.

I guess you should be tested for the usual viruses, Lyme (via LTT ELISPOT) and stool analysis from Redlabs. That's what I would suggest anyway..
xo
 
A chronic low grade viral encephalitis? particularly herpes family related but can be bacterial.

Anyway, I would get tested at Arminlabs and think about trialing anti virals and see if the symptoms decrease,

OR anoither angle might be to try somethng like longvida curcumin to see if inflammation decreases. IMHO.
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
Brain inflammation does not feel like inflammation - that is to say the brain does not feel 'sore'. And there is no inflammation in the usual sense in the brain in ME
Not sure what you mean by no inflammation in the usual sense in the brain in ME. There most definitely can be inflammation.
 

pattismith

Senior Member
Messages
3,931
Hi everyone. So I have had these symptoms a while. Sometimes I have these extra symptoms like my ears feels blocked (I have had tinnitus since I was a child ) my head feels slight pressure. My neck is stiff and sore and my right shoulder is always hunched up and at times sore. I get this feeling my head at base of skull could be inflammation related. My dr said my inflammation markers are up . How could I approach the nhs about a referral for an mri and is that even any use ? Drs have been usless to be honest . I know that's a common comment to see lol
Most CFS patients have this..I have the exact same symptoms and have had them for 24 yrs. I believe it comes from bacterial translocation from the gut and maybe other infections.
I got treated for Lyme and other bacterial overgrowth in my gut and it got a little better.

I guess you should be tested for the usual viruses, Lyme (via LTT ELISPOT) and stool analysis from Redlabs. That's what I would suggest anyway..
xo
Did you try Diamox?
head pressure heart palpitation