Feeling like no one understands - Fibromyalgia Acti...

Fibromyalgia Action UK

52,021 members62,051 posts

Feeling like no one understands

Ourkez profile image

Ok so im new to this and dont really have any idea what to write. Iv been diagnosed with fibro and have suffered for years to get to this point, i also have pelvic congestion syndrome and endo. Suppose i just feel so alone, feels like no one understands the pain im in or that its all in my head. Everyday is a struggle to keep up with 3 children and a full time job which is very demanding both physically and mentally. Would be nice to speak to people who feel the same. At the moment im struggling to walk and driving is excruciating.

14 Replies
Hazel_Angelstar profile image

Hi and a warm welcome to our community, where you will find plenty of us who understand what you are going through.

Our main site fmauk.org has plenty of information on fibro and you can also request a patient information pack at fmauk.org/resources

Hazel xxx

Thank you for the information. It will be nice to have people who understand x

Welcome sounds as though you have alot to cope with. You have come to the right place as many of us not only have fibro but other health problems which can make life very difficult. It must be very hard with three children s da full time job I admire you coping with that. Look forward to your future posts.x

Ourkez profile image
Ourkez in reply to rosewine

Thank you for replying, my husband is also military so most the time im on my own. Would you mind explaining your pain and where and how it affects you. Im intrigued to find out as i was sure my pain was something else. X

rosewine profile image
rosewine in reply to Ourkez

With pleasure but a bit difficult to explain as it changes each day and can change from your to hour. Some days it is just mild muscle ache, mild back ache and some fatigue and as long as I don't do too much bending diennir reaching up and pace myself I feel life is ok. Other days the middle in is intense, I'm so fatigued thst thinking straight is impossible, I will have a headache intense hip and back pain I will feel sick and my IBS will go into overdrive. I will have a pain that seems as though someone is drilling into my back with hot, zapping pain. If I have any infection or alot of stress it will bring on a flare. I have permanent inflammation around my rib cage called costo chondritis and haven't been able to wear a bra for more than an hour for about 7 years. Hope this helps. I do have osteoarthritis arthritis so somemif the intense hip and spine pain could be caused by that but it seems to be a different pain to the fibro.x

Ourkez profile image
Ourkez in reply to rosewine

Its so strange that people experience the same pains. Iv started to feel like im being crushed. I find myself wondering is this fibro pain or something else with every pain and have huge health anxiety because of it. What medication have you found helps cuz so far nothing helps x

rosewine profile image
rosewine in reply to Ourkez

The only one I am taking purely for fibro is Pregablin (Lyrica) which has certainly helped with some of the muscle pain and the zapping burning pain. I still get it but before being prescibed it was horrendous. For my osteoarthritis I take the maximum strength cocodamal (Zapain) and the maximum dose of Ibuprophen and if I decrease those my fibro pain gets worse so I think they must be helping it as well. I do take a high dose Vitamin D tablet and a CoEnzyme Q10 capsule and have felt some more energy since I have been taking those. They didn't kick in straight away it took several weeks but I have again tried stopping them and within about a week I have felt a deterioration. About once a month I have acupuncture by a lovely man who is also trained in Chinese Medicene. He is more knowledgeable about fibro than any of the medics I have come across and he was very helpful with tips about diet and pacing. He is also very kind as when he comes to treat me he tries to help my husband who has cancer but he won't accept any payment for him only for me. There are some good people in the world. I also find doing strething exercises help my muscles and the benefit is increased if I smooth some Mussleflex gel in. We only have a shower now but when we had a bath I found a deep warm bath with several handfuls of Epsom salts in it and soaking for half an hour and then getting into a warm bed really helped me if I was having a flare.x

YASMINTINA profile image

You’ve come to the right place we really do understand , it’s a rubbish condition , you are working full time and have 3 children so that’s a lot to take on board, a lot of admiration reading you do this, do you have anybody in the family that can give you alittle extra help , or even time out just to chill ? My daughter has 2 young ones , works 3 days special needs support in a school, has mild fibro, ibs, and endo , seeing her struggle and also having a day in bed at weekends my heart does go out to you. Take care Pop on for a chat when you can , if you would like to lock your posts here’s a link to help, healthunlocked.com/fibromya... x

Ourkez profile image
Ourkez in reply to YASMINTINA

Aww bless her, i really do sympathize with her. Th is condition is hard enough without children and work. I do have a strong family network but husband is away alot and i work pretty much 7 days a week. I get by the same as everyone else. You must be so proud of your daughter, she sounds like a strong woman and working with special needs isnt easy but very rewarding in itself i loved it x


we understand

I also am constantly in pain, day and night (it's waking me again) and I have a full time job and a toddler - so youre a hero doing all that plus 3 children!

Hi welcome I a 61 l always get told how good I look. Stopped saying what is wrong know one gets it. If only they could walk in our shoes for a day. It changes all the time every time I get something new it really got to me. I had hypnosis just to except it. It did help, you have come to the right place we do understand. Got bad IBS at this moment couple of days it could be something else. Wishing you all the best.

Hidden profile image

Hi Ourkez - Welcome to the forum most of us don't want to be a part of, but still find comfort in. I do not have your stresses as far as work and children, but please know that most of us do understand at least the disease aspect. The pain I feel can be part of my neck and into my shoulders, and can be sharp (as in I can't life my arms) or dull and throbbing. I also cannot wear a bra for the pain (and my skins reaction which is another show - ha ha), into my hips where the sharpest stabbing pain lives. Then into my thighs (IT band) and my knees, just pain in every step.. Then into my shins and the top of my feet. I had RA (in remission) and this is as bad or worse than that pain was, and I am getting worse for no known reason...

So, welcome sweetie and let us know if you need to rant or just want to connect or tell a joke... we are here for you

Thank you, mine is shoulders, hips, collar bones, knees, lower back and top of feet has just started. My left shoulder is the most painful and collar bones. How do you cope with the pain x

Hi Ourkez, I hope you are feeling a little better today. I feel it is only us "Fibro Warriors" who can understand exactly how bad the pain and fatigue is with Fibromyalgia and you have 3 children to look after and it must be so difficult for you. Mine were young adults when I was eventually diagnosed but my husband more so realised what I was going through everyday when my daughter in law to be at that time sent him information about fibro .

He started to realise that I wasn't being anti-social not wanting to go anywhere at night or weekends as was working then also and it took all of my strength just to look after my family and do the household chores, forcing myself when I felt I could just lie in a little corner somewhere. I was very fussy when it came to doing anything and I struggled to keep that going. I have written this before on the forum, that someone drew a picture of what fibro felt like, and it was a woman standing dragging another clone of herself along the floor,and I do feel I am dragging myself around some days.

I was so pleased I came across this website a few years ago as you realise other people are experiencing the same and can give help and advice. When I get really down with flare-ups and fatigue (I live alone now my husband died 2 years ago but have good family/friends) and get that I can't take much more of the fibro ,I find if I post how I am feeling I get various replies from so many kind people experiencing the same offering advice or just a friendly ear and that boosts me a little to know that I am not the only one who understands how bad this condition gets.

I get told how well I look constantly, but people just don't realise that you are in pain and every day is a struggle. I told my Consultant at the pain clinic that it is such an effort showering and getting ready to go out anywhere, and I do like to have my makeup on and my hair sorted, but most times feel I could just lie down after getting ready . It is more "Pride" than anything else. I always have made an effort in the days before Fibro and he told me to "keep that going as much as I could" so I struggle on.

Believe me it is not in your head!!! I thought it was too at one point. I hope you get help to keep the pains at bay as much as possible. I and so many don't like to take a whole lot of medications (I had jaundice due to some meds last year) so I have started using CBD oil which seems to be helping me not rely on the tramadol so much.

Sending healing hugs and a big welcome! Xx

You may also like...