Suspected fibromyalgia with severe endometriosis

[Purple_Badgers]

Hi all, hope you’ve had a good day (sending extra love if not!)

I’ve been suffering with terrible joint pains & stiffness, raised glands, along with chronic fatigue that isn’t helped even if I do manage to get a decent night’s sleep. Blood tests show slight anaemia & slightly low vitamin D, even though I religiously take a multivitamin and have been on a prescribed iron supplement. (I probably have a bit of an absorption problem, as I have had part of my bowel removed.) Tests have not indicated any cancer markers, inflammatory disease or thyroid issues, which I am grateful for.

I saw a rheumatologist last year, who found nothing significant but did mention fibromyalgia or CFS and suggested I seek further help if the issues continued. My GP has now diagnosed fibromyalgia, as everything else seems to have been eliminated. On the one hand, I’m thinking “Yeah, that makes sense, great, let’s see what can be done about it“, but on the other hand I’m finding it difficult to accept that a) I’ve got another permanent health problem b) it’s kind of mysterious & poorly understood c) there doesn’t seem to be much I can do about it and d) similar to endo, it’s an invisible illness with some stigma attached.

Please can any fibro sufferers tell me their top tips for pain and fatigue management? Also, how on Earth do you stay positive dealing with this every day? xxx

[puzzleprincess]

Hi Purple_Badgers,

I am in a very similar situation to you actually! I have DIE, fibromyalgia, Sjögren’s syndrome, IBS and am also slightly anemic and slightly low vitamin d.

I’m not sure where you are with your endo, but the biggest help for me was getting the endo pain under control. They say that fibro is like a magnifier for any other problems, and whenever my endo is flaring up, the fibro is considerably worse. I am waiting for excision surgery and currently taking dienogest, which has been an absolute life saver.

Fatigue is a funny thing because in situations like ours it could be coming from multiple sources. A few months after taking a strong vit d and iron improved my fatigue a bit, so if you have seen no improvement at all it might be worth chatting to your doc about why your not absorbing vitamins properly. Then I started a low dose of amitriptyline for the fibro and that helped some more with pain and fatigue because it helps you sleep. Other than that, it’s probably not the best advice but coffee keeps me alive during the day lol. I missed my morning coffee the other day and nearly dozed off driving at 10:30! I had only been awake for about 3 hours and had a good nights sleep the night before lol

On positivity - another tricky thing very individual to everyone. Personally, although I have multiple health issues, I luckily respond well to treatments and have an amazing support system. It brings me comfort to know that it could be a lot worse. I am also a very spiritual person and stay positive through that.

Wish you all the best with everything x

[Purple_Badgers in reply to puzzleprincess]

Thanks so much for your reply ❤️ I’ve got DIE/bowel endo , which was what lead to part of my bowel being removed. My endo pain is being fairly well controlled by painkillers and chemical menopause with HRT while I’m waiting for hysterectomy and excision at a BSGE centre. I’m the most comfortable I’ve been in a long time, in that respect.

My doc has recommended extra vit d on top of my multivitamins, so I need to purchase some. I’ll persevere with the iron, though it makes my constipation worse. She also prescribed amitriptyline, 10mg to be taken before bed, as my sleep is so rubbish due to pains/discomfort/restlessness. I’m to pop back in for a review after a month, to see if it is helping.

Unfortunately, I had to cut caffeine right down years ago (tea lover here), as my body would overreact to it with very red cheeks and the jitters/feelings of anxiety. Stimulated me too much I guess! Same with alcohol.

Things could be a lot worse for me too, and I’m lucky to even be here after my bowel emergency. Trouble is, I’m so annoyed at feeling ancient before my time, feeling like a burden/nuisance and having my choices, independence, freedom limited etc. Seems the light at the end of my tunnel has been pulled out from underneath me, if I can put it like that! 😂 xxx

[puzzleprincess in reply to Purple_Badgers]

That’s great that your endo is being well managed at the moment!

Ah that is a shame with the caffeine. I have a bit of a love hate relationship with it to be honest haha. Also gives me the jitters some days but I would be asleep at work (which I have done unintentionally many times) without it. Give the amitriptyline a go and see if it helps! It really improved my sleep, but like most of these medications people have different experiences, or need different doses.

That sounds really challenging, I hope that things stay stable with your bowel endo. I know what you mean with the feeling ancient though. I am 26 and some days it’s really difficult explaining to people that I only have so much energy, and have to carefully plan things out so I don’t overdo it even though I look perfectly fine from the outside xx

[AllthatGlitters]

morning I have endometriosis and adenomyosis as well as fibromyalgia and a blood condition. Been for iron infusions before and my Vit D is only okay as I take supplements.

To be honest some days I wonder what illness is causing my pain, it’s so confusing and difficult living like this. Along with the usual symptoms for endo and adeno, I have chronic fatigue which the doctor says causes my tiredness and when I say that I mean I have been hit by a bus feeling and no amount of sleep helps, also been told that fibro gives the pain in the body so all over can hurt or certain parts at one time.

I am on nortryptaline for fibromyalgia and when the pain gets really bad I take tramadol. A tens machine sometimes helps and a hot water bottle.

I think it is difficult when you are first diagnosed to get your head round it all. It’s not just one illness we have, it’s several. It’s also hard when nobody else around you has health problems.

Keeping your mental strength and positivity is an ongoing thing, I would say don’t compare yourself to others who are well as I have done this and it gets me so down. Concentrate on yourself. Do some meditation, relax when you can. Realise you will have good and bad days (there is a fibromyalgia forum on health unlocked when it helpful) so maybe come and join us there 💛

Please ask anything else you want, I have been diagnosed now for 7 years and it’s still tough xx

[Purple_Badgers in reply to AllthatGlitters]

Thanks so much for your reply ❤️ I’ve always had a quiet life, but these days I feel really isolated, and so upset that I can’t physically be there for my family a lot of the time. (Including my dogs 🐶 who I would love to run around with more!)

And yet I still look relatively well on the outside- apart from the increasingly large bags under my eyes- so people tend to either surprised or sceptical when I say I don’t function well due to pain and fatigue. If only they could spend a day in our bodies, eh?

[AllthatGlitters in reply to Purple_Badgers]

yes I look well too. People always say I look well. It makes me laugh as I am the opposite. This illness is so isolating as others don’t understand! X

[Dee_EndoUK Moderator Endometriosis UK]

Hi Purple_Badgers

It's good to see some of our community have reached out to you already with help and support. If you haven't already seen it, we do have a document that you can download on our website that runs down a range of options that could help you to manage your pain. You can find this at endometriosis-org.uk/pain-r.... Scroll down on the page and click on the link highlighted 'Endometriosis Treatment Pack'.

With regards to Vitamin D absorption, this can be improved by taking your supplement with a healthy fat such as avocado, eggs, oily fish (salmon, mackerel, sardines), olive oil, nuts or full-fat dairy. This is because Vitamin D is a fat-soluble vitamin.

In addition, magnesium also assists in Vitamin D absorption and magnesium can be found in green leafy veg, pumpkin seeds, almonds and avocados.

Check with your doctor about correct Vitamin D supplementation as your multi-vitamin may only contain a low dose of Vitamin D.

Hope this helps - wishing you all the best x

[Purple_Badgers in reply to Dee_EndoUK]

Thanks so much! ❤️ My endo pain is quite well controlled at the mo, as I’m on naproxen and nefopam, plus I’m in chemical menopause (Prostap) with hrt tablets (Livial) while waiting for hysterectomy and excision. I am definitely going to add some extra vit D tablets to my daily pills 💊 and perhaps some magnesium too. Hopefully they will pick me up a bit 😀

[Avourneen in reply to Purple_Badgers]

Hello lovely,

I’m sorry to hear this. One thing to consider is naproxen isn’t meant to be taken long term and it can really deplete some vitamins etc especially magnesium, if your magnesium is low it will affect your ability to sleep and can give you restless legs. But it is good at controllling ends pain so a tricky one there. I tried amytriptelline and it made me hallucinate very badly…..so I’m not a fan, apparently it’s quite a common side effect.

I feel like I can’t offer much useful advice, what you really need is something to reduce your pain and give you more energy. If your vit D is low though that can really deplete your energy.Maybe upping that will make a difference and you could try iron via those iron syrup things there are nowhere near as constipating as iron tablets.

I’m just a bit concerned about fibromyalgia diagnosis in general. I know there is a link with endo and fibro and I know fibro is a serious and very debilitating condition …..but I feel it’s something GPs diagnose when they feel they can’t do anything or don’t know what is going on and then people diagnosed with fibro are just abandoned and considered hopeless cases. I have heard numerous doctors saying that fibro and ME are not real illnesses and being extremely dismissive of both conditions. I also think they put patients they are unsure what to do with in this bracket of diagnosis.so it is hard to know if it is a helpful diagnosis or not.

It’s pretty rubbish to have two illnesses no one knows how to deal with.Maybe doing something really relaxing might help, I’ve recently moved house to a really peaceful place with a beautiful view and I feel far far less anxious and stressed than I did before. Maybe you could go somewhere super relaxing for a few weeks and see if that makes any difference. So I guess allI can say is take some magnesium or get it tested, up your vit D, try the syrupy iron supplement and try to go somewhere calming for a few weeks. I hope some of it will make some difference, you could see a pain specialist and see if there is any alternative to naproxen. It is meant to be taken only short term. I wish I had some better advice, research is being done into both conditions, might be worth looking into some trials to see if there is anything.

Really really hope you feel better soon somehow, send you lots of positive vibes and healing energy. Xxx

[rumpelstichen]

How long have you been having joint pain and the other issues? I had several issues 24 hours after the Pfizer vaccine and I was gaslighted for months, joint pain, swollen glands, urinary issues... Things I have never felt before.

[Purple_Badgers in reply to rumpelstichen]

They do say fibro is often traced back to a trigger. I’ve always been a bit low energy/often suffering flu-like symptoms, but my joints/glands/fatigue got suddenly much worse 2 years ago while I was trying to recover from my bowel operation. Many other mentally and physically stressful things were happening at the same time, and looking back, the previous couple of years had been stressful too… Fortunately I’ve never had much reaction to vaccines and in my case I wouldn’t make any link between the vaccines and my poor health. Sorry you suffered with yours xxx