FMS + Chronic Daily Headaches

Nashota

I hope this is the correct forum!

I'm looking for a bit of advice, I know people aren't doctors on here but maybe someone has been through or is going through what I have for the last 30 years.

I'm wanting to get a second opinion from a different GP, but I want to make sure I have the correct information first.

I have been suffering from CDH's 24/7 since 1995 (when I was in my early 20's) and was diagnosed with FMS in 2014.

I have again tried to address my CDH's with GPs, it was found that I had low vit D, so I had to take vitamin d which I have to take all of the time now and have blood tests every 3 - 6 months, however, I feel no better even now my levels are back to normal.

The GP that my son spoke today has said it's likely linked to my FMS but I don't fully agree with him due to the fact I've had the headaches since 1995 and didn't have any other issues that you get with FMS until my late 30's. I do think the FMS and menopause have made them worse and also caused me to have migraines, I'm not going to deny that, but I don't think the FMS is the sole cause of them due to how long I've been having them.

I know I can ask them to refer me to neuro but I'm pretty much housebound.

Does anyone else know anything about headaches and FMS? I really need some help with them as some days they are quite bad.

I also feel like I may have Sjogren's Syndrome due to other symptoms that I have but I'm going to address that in an appointment with a GP at a later date.

Mary_Scope

Hi @Nashota

I don't know much about FMS or CDS i'm afraid but i really hope that some of our other members who do have experience with this will reach out and be able to offer some support.

I was diagnosed with sjogrens syndrome back in 2022 though so i'm more than happy to chat about that if you have any questions etc 😊

Hopefully you will get some answers soon with that second opinion

Nashota

Thank you @Mary_Scope I've just been having various symptoms for a number of years, one of the main issues is the "Submandibular glands" both are swollen, more so the right one which is in my opinion quite swollen in comparison to the other one, I have tried to address this issue, I was sent for a scan but was told there was nothing to worry about, I also tried to address it again with a different GP and she said without even checking my records or the gland itself that it's normal for them to swell up when you are unwell.. so what, I've been unwell for how many years then… lol. I also tried to address it with SALT but the person seems to not know what Sjogren's is and blamed my swallowing issues onto globus, which I don't even agree with, the symptoms are more like dysphagia!

I get that they swell up when you have a cold etc but I've not had a cold for several years! Oh and my right cheek feels a tad swollen and has for a while. The Submandibular glands do get a bit painful as well more so the right, I don't know if that's a thing Sjogren's?

Also these symptoms on here - https://www.nhs.uk/conditions/sjogrens-syndrome/

Mary_Scope

I think it potentially could be @Nashota, my submandibular glands get more painful than swollen. Unfortunately I think it is quite common for very few of GPs or medical professionals to know about sjogrens (my experience anyway!).

I was very lucky as I have a lovely a nurse practitioner at my GP surgery so I told her about my symptoms and suspicions of sjogrens as I had symptoms for years but were worsening such as dry eyes and dry mouth and she did a referral tor rheumatology😊

Nashota

Hmm, so I could speak to the NP rather than the GP about it then? That's an idea, thanks @Mary_Scope Yeah the pain in the more swollen is more an ache feeling with a sharp pain sometimes.

Also, I found out the following through a site called The Fibro Guy with regards to my CDHs and FMS: - The National Institute of Clinical Excellence (NICE) and the International Classification of Headache Disorders (ICHD) do not recognise Fibro as a cause of headaches.

So in other words the GP isn't following the NICE guide or just doesn't understand FMS? Either way I think the best option is to email the GP that my son initially spoke to and get a second opinion from him with info from the NICE page which has a diagnosis criteria on it and then if he wants me to book another phone consult then fine but I've had two now and I think me emailing info and requesting a second opinion from him ought to be good enough? I'd prefer not to book another appointment as I feel it's a waste of time explaining the same things that were already explained.

This is the site that I got the info from - https://www.thefibroguy.com/blog/fibromyalgia-headaches/

Mary_Scope

Yeah that is what I did in my surgery @Nashota but in my surgery it is very hard to see a GP in general as they always give you appointments with nurse practitioner😊 Hopefully you will be able to get a referral into rheumatology that way.

That's interesting, I agree, from what you've said it sounds like requesting a second opinion is the best option especially now you have the NICE information

Nashota

Thanks @Mary_Scope I also remembered that I may have TMJ disorder so that's something else that I need to mention as it can contribute to the issue.