New and looking for some opinions please

[Claire1992]

Hi Everyone, just joined this forum as my Doctor recommended finding some other people going through the same things. I have had chronic migraines and daily tension headaches since I was 16 (now 29) and had the odd ache and pain. Since falling pregnant with my little girl in 2018 I have suffered eith incredible pain, initially it was put down to pregnancy, then having a C section, then depression and then my lifestyle choices but my husband had thought it might be fibromyalgia in January 2021 so recommended I go to the doctors.

I had some blood tests and explained my symptoms and my vitamin D was low but not too bad. They said they suspected it could be fibromyalgia but it could take years to diagnose. I went back in January this year as I can't cope with the pain. Our daughter, now three is very active and runs everywhere she goes and is very challenging. She is currently in the process of having a review for ASD (Autism Spectrum Disorder) so I find myself constantly exhausted chasing after her and trying to calm her down which makes my pain worse. I have migraines, joint pain (started wearing wrist and ankle supports) I am on very low medication for pain but it does nothing. Doctors are reluctant to put me on anything stronger as they believe this will make me an 'unreliable mother' as the medication could make me drowsy so I have just to suffer with the pain. I am constantly FREEZING and drained of energy and want to cry all the time. I try my best but every day is a struggle and I constantly feel like a bad mum and wife and I feel incredibly guilty that this is not the life the signed up for. I just want to sleep all the time and I feel like I always moan with the pain.

I have since been diagnosed (after another set of bloods) with vitamin D deficiency and my doctor has said that it is very likely I have fibromyalgia and if anybody asks (like my work at the time that I have since had to leave) I've to say I have fibromyalgia and we're 'treating' it like it's fibromyalgia but I haven't had a diagnosis? I know and understand that it takes a long time but the not knowing is killing me. Husband thinks that was my doctors was of saying I have it? I'm not so sure.

Can anybody please offer advice on what it might be like, diagnosis, how long you had to wait etc?

Sorry for the big rant, I don't talk to anyone about it haha.

Thank-you in Advance.

 

[Auriel]

Its usually done with a rheumatologist (but I’ve no idea why they said it could take years!) it wasn’t a known thing when my symptoms were at their worst and I was frankly so embarrassed at the patronising a+e dr’s diagnosis that I was imagining it all that I refused to mention again till years later, then my much better surgery gp did some tests sent me to rhuemy and the rest is history also welcome to the forum! here’s a cup of coffee + a cupcake

 

[fimi]

Hi Claire1992 and welcome I also took years for diagnosis due to my symptoms starting up when fibro was difficult to get any doctor to listen (and some still don't) However, they can diagnose quite quickly now (things are always changing)

My advice would be to have as many tests done as you can to make sure nothing else is going on. Because even if you do get the diagnosis it's mainly about self care which you can do now anyway, and will help you more in the long run.
I do hope you find ways to ease things for you soon. And please keep chatting, it will be nice to hear how you get on.

 

[JayCS]

Hi Claire, I second third fourth Auriel & fimi & your husband, who btw sounds very understanding and knowledgeable, a brilliant asset for you.

The newer criteria (ACR 2010/11 & 2016, AAPT 2019 and the new UK guidelines 2022) have all been developed to make the diagnosis faster. To give us more of a handle on it, they have put the criteria in forms we can use as a checklist ourselves and to give to the docs.
Especially the ACR 2016 criteria (attached) also say it is no longer a diagnosis of exclusion, whilst docs still need to sort out more.

If it's peace of mind and orientation you and your docs need for the FM diagnosis, use the checklist for that and if your docs are still hesitating and delaying try a different doc (e.g. rheum.) or get a private second opinion, there are quite a few possibilities (even in the UK).
If you want to also exclude other diagnoses, which all of us here thoroughly recommend, then it's just a matter of getting your tests quickly. For my 2nd rheum. to diagnose FM she just saw and tested me and that GP, neurologists and endocrinologists hadn't found anything.
Parallel to and after that diagnosis, I "bugged" loads of docs (50) and they found lots of things going on, some of which were partly contributing a little bit, some chance findings, but many very important. Most of these things were found or not found inside of 6-8 months.
FM diagnosis time by the 2nd rheum. essentially 2 months, after the 1st rheum 3 months before hadn't found me eligible, "as I didn't look it".

 

[Claire1992]

Thank-you so much for the lovely welcome! I'm sorry you had such a rough time with it. I had my symptoms put down to mental health too and it was 'all in my head' so I know how you feel. I'm glad you finally got the help you needed though. I have been referred to rheumatology but again, due to the pandemic, I've been told I could be waiting around a year. Thank-you so much for your help xo

 

[Auriel]

Claire I forgot to mention I’m also low in vitamin d too (it’s part of my prescription due to it) and I get a lot of migraines quite regular as well (seems to be a common thing with fibro), I think there’s been two threads about it here so far

 

[fimi]

I had my symptoms put down to mental health too and it was 'all in my head' so I know how you feel.

I had that too Claire and it's not nice If anything's in my head, it's the dream of feeling as fit as a fiddle!

 

[JayCS]

If anything's in my head, it's the dream of feeling as fit as a fiddle!

Praps that's part of my secret: that I believe - and can in moments prove - I "am" fit as a fiddle.
Yesterday playing table tennis, I couldn't pick up the balls, but neatly kicking the ball over to my opponent, precisely, and once in mid-air, must have looked reeally slick. At least it felt it, and that's what counts.

 

[fimi]

Definitely! Feeling good about something you've done goes a long way

 

[JayCS]

I’m also low in vitamin d too

Vitamin D is so tricky. One of the first things my GP came upon, prescribed me high dose "20.000" once a week. Then (2 years ago) an alternative health practitioner told me she has actually taken that more than once a week (something I've now been testing, because mine is still a bit below "average"), and aside from all warnings that that's dangerous I think even almost daily. This year I took the recommendation seriously to take it with vit. K2, of which the best form apparently is MK7, so I'd swapped to that.

On the other hand I'm/that's not managing to improve my fatigue, not even back to 20%.
Someone mentioning olive leaf extract, recommended by Eric Berg brought me on to a very amateur youtuber Melissa Schworer, who recommends Morley Robbins, who says don't take isolated vitamin D3 supplements.
Also don't take iron, zinc, molybdenum, multivitamins, synthetic ascorbic acid, fluoride, silver, processed foods, instead: bioavailable retinol (best retinol), bioavailable copper, wholefood vitamin C and E, cod liver oil, organic wholefoods, Magnesium Malate & glycinate & topical, Cod liver oil with breakfast, natural B vitamins, silica, boron, taurine, iodine, go out into the sun more (quick overview see organicbiomama).

For vitamin D rationale see meyersdetox transcript: he thinks in isolated overdosed form it sets off vitamin A, calcium, potassium, etc. Doesn't mean vitamin D is all wrong, just exaggerated. However in my case all the symptoms he sees as related are 100% in check or even the opposite: heart calcification, arrhythmias, anxiety, seizures, constipation.... He appears a "nice guy" to me, whilst not a doctor, but I am taking him seriously, because I have experienced taking copper (on a hunch) has visibly reduced iron deposits in my calves and he has the only explanation for this I've found.

What I'm sure about is don't take D2, only D3.

 

[sunkacola]

Definitely! Feeling good about something you've done goes a long way

I will give you another one. I did a pretty challenging six day mountain trek and I did OK. I knew going there (it was out of the country) that I might wake up one morning having a bad fibro day and then there'd be a major problem because we were in places where the only way down was to walk. But I refused to not go because "what if", so I went and figured I would see what happened and deal with it as it came. It was not easy, but being there was so wonderful that I loved every minute. I was exhausted for days after I got back home, but the point is that you can do more than you think if you work hard at managing it and doing the self care that works best for your body.

 

[fimi]

I agree, whether it be up a mountain or up a hill, finding ways to achieve something you really want to do, and achieving that goal, can give you a real boost. Even if you are worn out for a while after

 

[sunkacola]

And, remember, it doesn't have to be a trek! If you manage to do 10 minutes longer on your walk than you did last week, that is something to celebrate. Every little bit builds on what you already have accomplished and it doesn't need to be a big thing to be important.

 

[sweetkamie20]

I am...drained of energy and want to cry all the time. I try my best but every day is a struggle and I constantly feel like a bad mum and wife and I feel incredibly guilty that this is not the life the signed up for. I just want to sleep all the time and I feel like I always moan with the pain.

Hi claire I am newly diagnosed so I am just starting my journey to manage fibro.

The feelings you describe are so familiar. I think mosf of us confronting fibro have felt these same things - guilt because you arent doing everything you feel you need to, sorrow for yourself because its been super hard, and sorrow for the people you want to give more of yourself to. Also at times I feel sorrow because i dont think others understand/believe how hard things are for me. And then there are times I still wonder if I am imagining how my body feels (am i being lazy, etc.?) .

Feelings like these are so normal in fibro I am not aware of anyone that hasnt gone through this "initiation rite" into accepting and managing fibro. Likewise until recently it was so uncommon to be diagnosed with fibro that many people went undiagnosed for 10+ years (in my case 18) so it surprises us zero that you may not have been formally diagnosed yet.

It sounds to me like having a formal diagnosis for whatever you are dealing with is going to be what empowers you. It did that for me because it led me to give myself permission to be human, permission to ask others to be patient with me, a gameplan for how to make things better, etc. If your current doctor isnt able to help you this way, I encourage you to search for a local doctor that specializes in treating fibromyalgia or a rheumatologist.

I also found it really empowering to learn what fibro is scientifically (what it is is up for debate but to me it looks like its a neuroprocessing disorder). Just understanding how it probably works made managing it feel possible.

Can anybody please offer advice on what it might be like, diagnosis, how long you had to wait etc?

It shouldnt take you much longer that getting labwork done and seeing a specialist/specialists to rule out some things. Just need to choose a doctor that will actually diagnose fibromyalgia.

I am glad you found us. This is one place where you can come and be reminded that someone gets you and life can get better

 

[sweetkamie20]

Thats a great reminder that sometimes the risk is worth it