Hi all, I am currently experiencing a flare up of symptoms that started after my last period. Constant lower back pain, fatigue, muscle pains etc and also for the last 3 weeks lightheadedness. It's worse in the morning and early afternoon and seems to settle by evening but it's affecting my daily activities and doesn't go away when I lie down. Have been to the doctors and have had my bloods done which have all come back fine so am thinking now it could just be hormonal.
Has anyone else had this? Will be going back on the pill soon so it might help but it's been going on for a while and am thinking it could be to do with the back pain .
so grateful for any advice on this
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vickflick
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Lots of things can cause lightheadedness. If all the common vitamin deficiencies like iron and B12, zinc, magnesium, vit D etc have all been ruled out then keeping a diary over several cycles may help to identify a hormonal pattern or element and to take back to your doctor if it persists or worsens.
The main thing is to be careful over safety. I had a nasty fall that needed foot surgery.
I developed mine after suspected viral meningitis . It was aggravated by low Iron and d3 but has persisted once those were addressed. Im left with POTS, vestibular issues, hormones, my recently diagnosed ME or a combination of several of the above. I doubt I will ever know.
Thank you for replying, my d3 came back lower than normal but doctor said it's not unusual for this time of year so have a supplement for that now.
Can I ask do you get yours every day? I do suffer from anxiety but I'm not sure it would effect it to this degree where I have it everyday. It seems too much of a coincidence that it's happening whilst my back is painful and I have other symptoms also.
So sorry to hear you are suffering from all those health issues, have you found anything that helps?
I get it most all the time, but in variable severity, aggravated by mental and physical fatigue but i cant really see a consistent pattern since sorting my iron.
Bizarrely I think having too little salt in my diet also aggravates symptoms (a hint towards POTS possibly) and boosting that may have helped a small amount.
Overall, no nothing shifts it. I see an ENT next week to check the vestibular angle but tbh I now think that's least likely ME most likely and I'm just stuck with it.
I did think about asking for endocrine or cardio referrals but Ive utterly run out of steam at the moment after having so many investigations for so many symptoms.
I have just looked up the symptoms of ME and this sounds exactly like what I have been having, even the sore throat that I've had for weeks and doesn't go! How did you have yours diagnosed?
Have you ever looked at alternative therapy for your symptoms? I used to have accupuncture after my last lap and before my pregnancy and this helped I think. My endometriosis symptoms went away totally while I was pregnant but since giving birth in march they have come back twice as bad.
I really hope you get some answers from the ENT appointment, knowing what it is can have such a positive effect to your mental well-being even if the physical symptoms are still there
There is a well documented association between endo and ME so its a distinct possibility. But there is a fair amount of overlapping of symptoms.
The best diagnostic process is to get a receptive gp to refer you to a specialist me/cfs clinic meassociation.org.uk/nhsspe...
where if diagnosed you usually get a series of occupational therapy sessions. The services are variable in quality (due to the history of it being wrongly thought of as psychological, now thoroughly disproven) and sadly not in the same league as bsge endo centres and there are even fewer treatments. Unfortunately my area cfs service has a particularly poor reputation and I'm too unwell to travel to a better service. But all they can really do is teach you pacing and relaxation, though those are beneficial. The diagnosis was helpful and worthwhile in itself too. as it explained sooo much and I now understand why I never recovered from my surgery and I am finally starting to alter my expectations of life to something depressing but more realistic. I know I'm unlikely to manage to return to work now.
The one positive for me (aside from having the worlds best hubby and rescue collie) is that one of the viral meningitis charities have been very supportive and have put me on a programme of cranial osteopathy starting monday. I can't face acupuncture since a traumatic botched lumbar puncture in hospital for my V. M. left me with coxxodynia. I am less hopeful than I was when I applied and thought i "just" had after effects of the meningitic virus but anything that helps even briefly will be a very welcome relief at this stage.
Sorry for sounding a bit negative, Im just in glumsville after a bad night today.
Good luck if you decide to go down that route, and I hope you start to get more answers as well.
Ps back pain was my my lead symptom of my rv endo nodule prior to surgery. Along with bladder bowel issues and dyspareunia.
Please don't apologize for being negative it sounds like you are going through so much its totally understandable. So happy to hear you have such a great partner and fur baby to help, my cat has been there since the start and whenever I am feeling low and need to go to bed she is always there to give me cuddles and comfort.
Oh and my partner too 😝
So much great advice, thank you, will be seeing the doctor next week so will make sure to bring all this up and see what she says. I was prescribed beta blockers a few weeks ago as I had mentioned suffering from anxiety now and again but never picked them up as the doctor said they were to take before stressful situations like social gatherings, however that's not how my anxiety works and I feel fine socialising with people, it usually comes on out of nowhere so have no way of taking it before but I might just give it a try.
So hoping I can get to the bottom of it, have been in bed most of the day, so tired and woozy
I hope you had a better night last night and good luck for your programme tomorrow
Well, I suffer with that type of anxiety. Apparently "free floating anxiety" is a thing, or so I have been told in a ME forum. My pregabalin is helping me with mine interestingly. I always thought it a character flaw as drugs never worked before.
First date at the osteopath seemed promising. First time hubby and I have come away hopefully from a medical appointment.
Good luck at the gp surgery let me know how it goes xx
These are some of the symptoms I get (though I haven’t been formally diagnosed yet because….doctors), my pains always been in my back, it feels like someones crushing my lower back when I’m on my period and it can last for days after. I also get really light headed during my period and on my period this month (about a week ago) I fainted.
The light headedness cold be all number of things from the pain it’s self, to being anxious about it, to low blood pressure. Sometimes when you stand up fast your blood pressure lags behind a little bit as it increases when you are walking and standing up to be able to get blood to the brain. It could also be that you’re not eating or drinking enough you could be dehydrated or have low blood glucose, I know when I feel like this the last thing in the world I want to do is eat and make sure I am drinking enough.
For the pain, NSAID drugs like ibuprofen, or another NSAID that is prescription and your doctor may be able to prescribe you like naproxen, mefenamic acid etc, I have found have helped my back pain. However, you can’t just take them when you’re sore. NSAID drugs work by blocking the production of molecules that cause inflammation and pain (prostaglandins), and therefore if you’re not taking the dosages on time you allow those molecules to be produced build up and cause pain. When you go onto the pill you’ll be able to predict when your period is so I begin to take my pain killers 24 hours before I know it’s going to start and I’ve found that is far more efficient and it stops the pain from really coming on full blast and you don’t constantly feel like your fighting it. NSAIDs might help now as well, but it will take 24 hours for them to get to full effect since they stop pain production rather than block pain so it takes longer to be fully effective.
I hope you start to feel better soon, I’m in the same boat just now and it’s awful.
Thank you so much for replying and sorry to hear you havent had a diagnosis yet, it took 15 years before I had a diagnosis via a lap and had been told I had IBS, a grumbling appendix amongst other things so I know how frustrating it can be, just keep going!
Naproxen works well for me but until my appointment next week I am on paramol which seems to ease the back pain, which comes and goes throughout the day and a weird tailbone pain (which is new)
I hope you start to feel better soon too, I am looking forward to my period as although Painful might reset these strange symptoms
So sorry to hear you have it too, strangely I don't think mine is connected to the pain as it is all the time even when the painkillers have kicked in. But have been having different bowel movements and mucus in my poo though, bloods all normal but I wonder if it's connected. How long have you had your symptoms?
I experience the same symptoms, during my recent lap they discovered amongst other things endometriosis on on my utero sacral ligaments and the symptoms you describe are associated with endo in this area (I too find acupuncture has helped but sometimes there is a flare up)
Thank you for replying, I had been looking at the symptoms of utero sacral endo and thought it seemed similar, so glad accupuncture helps you, did the lap help? Did you also have constant lightheadedness?
I am only week 5 post op, so am still recovering and my symptoms haven’t improved yet (from what I read recovery can be a long process for areas such as the sacral ligaments, it can take a while to see an improvement. I’m also waiting for pelvic floor therapy which is helpful for the ligaments to recover
I get this alot..normally about the same time every day..lightheaded and kind of like dizzy? The fatigue is awful I found vitamins helped..but I'm now two weeks post lap and the fatigue is back..Feeling like I've had no sleep! I'm not sure if it's a hormonal thing or a endo thing as alot of people with endo seem to suffer the same symptoms! x
Thanks for replying, so sorry you are feeling so rough too, how long do you feel dizzy for? Mine starts in the morning before I have even got out of bed and is pretty constant most of the day, it's only been for couple of weeks now but because it's started with my endo back pain flare up I'm assuming it's related
It can last up to about an hour..My head goes all kinda foggy too..I've had that for a while!
God I get that was scary! Mine is normally about 11ish..I could even be sat down and the room with start spinning..it happens sometimes and I think I'm actually guna pass out..everything goes black and I need to close my eyes!
I was diagnosed with ME 15yrs ago after suffering a wide range of symptoms.
Some of those symptoms were from the endometriosis but wasn’t diagnosed until a few years later.
I’ve always suffered from light headed ness and then that went to the next level when I woke up feeling drunk 7 yrs ago unable to move. 7 yrs on I’m still suffering. One thing is bad enough x
I hope now that you have been diagnosed you can get some help for your symptoms, it's terrible we have to wait so long for a diagnosis when it's such a common condition 🙄
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What do I have to do?
Have I got Endometriosis?
Fed up no Endro from lap
Update from Question this morning.
Surgery cancelled and moving to new area
