Face pain and headache

HayleyO

Member
Joined
Oct 16, 2023
Messages
14
Reason
DX CP
Diagnosis
11/2023
Country
UK
Hi,
After nearly 9 years I am still struggling to get a diagnosis. So far I have wrongly been diagnosed with psoriasis, psoriatic arthritis, chronic pain syndrome caused by hyper mobility of joints all of which I am now told I don't have. I have kept a diary of symptoms and they are so varied, ranging from muscle pain to vertigo. I had given up trying to get an answer, but have recently gone back to see another doctor after the pain in the centre of my face and accompanying headache became worse. I have had it almost constantly for a month now, although it sometimes goes and comes back and it varies in degrees. I have no discharge, or congestion. It feels like pressure in the centre of my face, it can be around one or both eyes and my head can feel tender to the touch. My head feels muzzy and the back of my neck aches. I tried to flush my nose with saline, but it wouldn't go up my left nostril. When I saw the doctor asking if I may have Fibromyalgia she didn't do any examination, but did arrange for blood tests and is arranging for me to go to a Menopause Clinic. I am 60 years of age, my symptoms began at about 48 after major abdominal surgery. The doctor did a test scoring my symptoms and it came back as inconclusive. Some of my blood tests results are back I have abnormal blood plasma viscosity, but no action is required and low vit d which action needs to be taken. I do take vit d every day, it may be my lack of bowel is possibly stopping vit d being absorbed. I have to wait 2 weeks to discuss my results with another doctor, everything else seems ok including my hormones . After the appointment I was worried about my headaches and managed to get another appointment with a paramedic who gave me a high strength steroid spray which after a week doesn't seem to be working. I just wondered how my headache symptoms relate to a possible Fibromyalgia diagnosis? Sorry for the long post, I am feeling a little down this morning as it seems to be an uphill struggle just trying to get a doctor's appointment stresses me and if I am honest I don't really feel confident in some doctors, especially as in 2007 due to a medical mistake I ended up in intensive care for 11 days with a 50 % chance of survival and a 7 week hospital stay with only a tiny amount of bowel.
 
Hi HayleyO,
I am not a doctor but I can share with you my facial nerve pain. The location of my head pain is usually the back of my head, jaw line, ear area, and the side of my neck. I used to get massages on my trapezoid muscles and neck but can no longer because it will cause a delayed nerve pain response that takes a week for the pain to subside. I also will have nasal congestion when my head is full of pain along with tired, sore eyes.

Also, I take a muscle relaxer, Tizanidine, that diminishes the pain, tremendously. I hope this helps.
 
@HayleyO
I'm a woman, 63, and have had fibro for about 32 years. It seems to have been precipitated after the birth of my 2nd child and got even worse after a chiropractic neck adjustment.

I've had a good many headaches, many of which don't have a specific cause or cure! Do you grind your teeth? I do, and it can produce TMJ and imposter-like symptoms. But in recent years I developed pain on one side of my head, from the jaw/ear and up. At one point I stopped talking because it hurt too much. It was crazy. Somehow I found myself in physical therapy, and the stretching neck exercises worked amazingly well.

A couple years later - and I admit after a year I stopped keeping up with the exercises - it returned but with scalp and right eye pain. After a bunch of eye tests, including an MRI, a neurologist diagnosed it as occipital neuralgia. I was given injections in the base of my neck, which didn't always help. In addition, I was given the muscle relaxer tizanidine. It does work well but knocks me out, so I take it only at night.

Oh, one other thing. I also used saline nasal rinses in attempts to "clear" my sinuses. Funny thing, last year went to an ENT who said my sinuses were just fine, didn't need anything and what I was experiencing was nerve pain.
 
Hi @HayleyO ....
It sounds as if you have been through a lot!
Just a couple of thoughts for you:
If the steroids stopped working, stop using it. Steroids are never good for long-term use in any case, and may very well only make your problems worse.

The varied symptoms are very common with fibro, so don't feel alone. It's why so many of us have felt crazy at times, and that's made worse if doctors don't seem to know what to do.
As for the headaches relating to a fibro diagnosis...........fibromyalgia patients have reported pain literally in any part of the body you can imagine.
At the same time, any new symptom or anything that gets worse should always be discussed with your doctor.

At least here, everyone understands how hard it is sometimes and we support each other.

for the most part, if you have fibromyalgia you are sort of on your own to find out what works for you or what helps you because no one thing works for everyone. Sad, but true.

We can help by telling you what worked for us, but you will have to find out by trying things for yourself.

One really big favor you can do for us here:
when you write, please break up your post into paragraphs!!

Many of us have a very hard time reading large blocks of text, and may skip over your post because of that. We all want to be able to read what you write so we can try to help if we can.
You are not alone, even though it feels that way.
And you are welcome here. I hope we can help.
 
Thank you to you all for your support, it really does help to know I am not the only one having these issues.

It's helpful to read on here from people who have a diagnosis, I don't seem to be going forward reaching one that feels right. I have had so many diagnosis that I know are incorrect and then prove to be. Many of the doctors don't listen properly and cherry pick bits of the information I give to fit their diagnosis, while ignoring issues that don't fit.

When I read your posts I think "yes" that's exactly how I feel and after talking to a lovely lady from the National Fibromyalgia Helpline she explained why I was getting some of the symptoms, I actually cried after speaking to her. I felt I had been heard.

The doctor I saw recently did a test scoring my pain symptoms over the past week, it came back as inconclusive, mainly due to me not having the same symptoms in both sides of my body at the same time, obviously I may be totally wrong and not have Fibromyalgia, but is this always the case?

The lady from the helpline told me a Rheumatologist was not qualified to diagnose me and had used outdated criteria to diagnose me previously, when I mentioned this to the current doctor she said "well who else?" Are there consultants for this condition?

To be fair, the doctor has arranged lots of blood tests to rule out other possibilities, but I have been given a telephone appointment to discuss the results
Hi @HayleyO ....
It sounds as if you have been through a lot!
Just a couple of thoughts for you:
If the steroids stopped working, stop using it. Steroids are never good for long-term use in any case, and may very well only make your problems worse.

The varied symptoms are very common with fibro, so don't feel alone. It's why so many of us have felt crazy at times, and that's made worse if doctors don't seem to know what to do.
As for the headaches relating to a fibro diagnosis...........fibromyalgia patients have reported pain literally in any part of the body you can imagine.
At the same time, any new symptom or anything that gets worse should always be discussed with your doctor.

At least here, everyone understands how hard it is sometimes and we support each other.

for the most part, if you have fibromyalgia you are sort of on your own to find out what works for you or what helps you because no one thing works for everyone. Sad, but true.

We can help by telling you what worked for us, but you will have to find out by trying things for yourself.

One really big favor you can do for us here:
when you write, please break up your post into paragraphs!!

Many of us have a very hard time reading large blocks of text, and may skip over your post because of that. We all want to be able to read what you write so we can try to help if we can.
You are not alone, even though it feels that way.
And you are welcome here. I hope we can help.

with a practitioner rather than her. They will be using her notes on my file, which I have read and they are missing some information including the fact that I had an ileostomy reversal and only have a "coke can and a half of bowel" (Description from the consultant who did my operation.)
 
@HayleyO .....One thing to keep in mind is that a diagnosis, while something that everyone wants to get, will not actually get you a whole lot. It is something you can put on insurance forms, and you may be taken more seriously by medical professionals....but you also ay not be, just because you have the diagnosis. So, while it is worth pursuing for your own reasons, it is not necessarily all that helpful.

It's not true that your pain has to be on both sides simultaneously all the time in order for it to be fibromyalgia, and the person who said that lacks information. Many medical professionals are ignorant about fibromyalgia, unfortunately. Scoring of pain symptoms over the course of a week is not the way to diagnose fibro.

What is important in diagnosing is having had significant, serious pain persistently for more than 6 months, usually on both sides of the body and upper and lower (although not necessarily all at once), usually accompanied by other symptoms such as difficulty sleeping, brain fog, and so on, and most importantly, there not being any established other cause for these symptoms.

So all of the tests, blood tests, MRI, whatever, are not to diagnose fibro but to rule out the other things, of which there are many, that have some of the same symptoms.

There is no one test that can diagnose or rule out fibromyalgia, so anyone who tells you there is, is uninformed.
And yes, there is a lot of confirmation bias in doctors, unfortunately.
 
Thank you for your reply and helpful advice.
 
Has anyone experienced weaning off Cymbalta?
 
Has anyone experienced weaning off Cymbalta?
I simply stopped taking it between one day and the next. It was causing me absolutely unbearable side effects, and once I realized they were coming from the drug, I just stopped it.

Now, I am not suggesting, let alone recommending, that anyone else do as I did!
A person should always consult with their doctor and only taper off a medication as directed by their doctor, and under supervision. I am only saying that I chose not to do it that way because the side effects were that bad. It didn't cause me any problem to stop it, although it took three months or more for the effects to go away completely.
 
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