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.

Billiegoat

Hi

I've had migraine and chronic daily headaches for around 35 years. Thats always been there. I now have Rheumatoid arthritis but im sorry I don't know about the relationship between your conditions and headaches.

My experience is that neurology said to me that they don't care about the cause they just treat it.

So I took matters into my own hands and referred myself to the London migraine clinic. It's a charity so I gave them what I could but it has been transformative. I was advised on triggers, supplements and how to manage migraines. I find looking after myself and taking life bit slower has also helped. They also then advised my GP of my treatment.

Hope that helps

Nashota

Thanks for responding.

I wish we had something like that here!

Nashota

I ended up sending a letter to the first GP who didn't link my FMS to my headaches and asking him for further assistance with my headaches and migraines, I said that I'd be willing to try medication that I can swallow and that won't affect my IBS and reflux and that atm referrals aren't an option but my son is hoping to be driving in the next year which will make attending referral appointments a little easier.

I also stated that NICE and another place do not see FMS as a cause of headaches and pointed him to the diagnosis criteria for headaches. I gave him other info about possibly having TMJ disorder due to teeth grinding and asked if I could have a blood test to see if I am going through the menopause as I know that can also cause problems with headaches and migraines.

michael57

Could you take calcium channel blockers since my strokes I can no longer have the injections daily for cluster headaches and have found the blockers work rather well when loaded into your system

Nashota

Hi @michael57 thanks for taking the time to respond. If the GP wants to speak to me I'll try and remember to ask my son to mention it to him. Thanks for the suggestion.

@Mary_Scope I wanted to ask, I mentioned that the glands nears my neck are swollen/sore, and you mentioned that yours are also painful, can I ask is it more of an aching feeling or? I feel like mine ache often and I also get like a shooting pain from time to time, it affects my right one more as that's the one that's most swollen.

Also, how did you go about getting diagnosed, tests etc?

It's something I want to address in the new year along with my mental health, I'd like to be diagnosed, hopefully my son will be driving in the next year (just need to sort his provisional out) which will make attending referral appointments a bit easier.

Mary_Scope

Hi @Nashota, yeah mine feel quite achy and they are really tender if I touch then when they're in a flare up!

I had an appointment with a nurse practitioner about something separate and mentioned it to her. She didn't know what it was and so she googled it there and then I explained my symptoms to her and how they were impacting me. She then said she would do me a referral to rheumatology which she did and then I was diagnosed in that rheumatology appointment😊