My struggle with fibromyalgia, mine s... - Fibromyalgia Acti...

Fibromyalgia Action UK

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My struggle with fibromyalgia, mine seems to be the worst of all cases


Hi everyone. I just joined this community. I have been very sick for the past two years and went for series of tests with all coming back normal. Life became meaningless to me. I was eventually diagnosed in August this year that I have fibromyalgia. This has really messed up my life. I am in pain 24 hours of everyday, I feel exhausted all the time. I am very depressed as I can't do all that I used to enjoying doing. Looking after my 6 year old child has become a challenge which is killing. All the pain killers prescribed never worked for me. I have weird experiences such as burning sensation on my anus, irritable bladder, tingling sensation on sole of my left foot, feeling as if my hear wold explode. Has anyone had all these before? And if yes, how did you manage it please? I am becoming suicidal.

Expecting to hearing from you all please and thank you in advance

11 Replies

I suffer the same as you and all that helps is cbd oil i have warm baths and invested in a cheap hot tub with jets and good strong shower jets on particular burning pain i take deloxatine i dont sleep so do take sleepers but dont like to all time staying warm is really important and good positive friends xxx

Yes, I go through periods of pain Luke the fly. I currently have a sore throat and stabbing ear pain on my right side. A few days it was accompanied by burning pain from the nape of my neck, up and over my head to my brow and down the side of the face. As the right hand side pain has started to ease, my left side of my face has started with neuralgia. It feels like all my teeth on my left side have tooth ache, along with extremely sensitive check, inside and out. So painful my hair touching my face hurts!

I get pins and needles, tingling and stabbing intermittently in my hands, feet, legs and arms. My muscles in my feet cramp. My body feels like a lead weight and I only sleep because of my ptsd meds. I never feel refreshed, and it takes about 2 hours to be awake enough to go to work.

I have had this for ever really, but it became chronic about 10-12 years ago. I gave 2 kids, who would have been about 6 and 11 at the time. I was workng full time etc. I don't really know how I managed then. I just kept going. But, then, my husband at the time refused to accept I was chronically ill and address my need to stop work. He just kept driving me to work and dropping me off. I hoped I wouldn't get the sack.

Now, I listen to my body as best I can, and try and work with my symptoms, rather than fight them. I have learned to accept myself as I am. I am not super woman. Just me.

I also use herbs and essential oils too. Especially chamomile flowers as a tea. You might want to look at complimentary therapies to relieve symptoms? Taking advantage of good things, like laughter and sunny days (Just sitting in the sun). Gardening in little bits. Doing jobs in little bits. Resting frequently. Wash up. Sit down 20 mins. Dry and put away. Sit down 20 mins. You know...

Hi, you're not the only one feeling like this. Most of us on here have too. My life of constant pain is horrendous & when I think things can't get worse, I develop a new kind of pain somewhere else!? Why me? What have I done to deserve this? Are you on anti depressants? Fluoxetine help me cope with it all. I recently cut down/came off them so I could try Duloxetine - I wasn't on it for long due to chronic side effects/it not working. My depression symptoms came back big time - the dark thoughts & endless tears. Back on fluoxetine & I'm coping again. I take codeine too, not that it works after long term use. I get a warm fuzzy feeling from it, which is better than nothing! My TENS belt helps tho'.

Please don't think you're alone. Vent all your frustrations, etc on here because we do understand, we can tell you about our lives & we cope with it x

I feel for you and I know 100% where you are coming from. Do you have other support? Can someone take your child a day a week or at weekend and give you a rest break? Does your doctor know how you feel? A course of anti-depressants or therapy may help while you pursue options that may help.

I can relate. My symtoms are also very severe, took 5 years to be taken seriously and be diagnosed by which time it was severe. I was told that I would get a flare up once or twice a year and live an almost normal life the rest of time. Not so for me. Any routine activity can provoke a 'flare' I feel as if I actually live in a flare all the time just it gets more intense. I have muscle soreness, burning, stiffness, sharp stabbing sensations, tingling, facial neuralgia, eye pain, vaginal pain, clumsiness, feet are agony. That's every day. I also have a sort of weird all over clicking where every joint clicks all at once. My children have called me Snap Crackle and Pop or said I sound like a packet of crisps. I developed facial and occular rosacea at the same time as the symptoms started and I experienced it as painful. My dermatologist does not think its a coincidence, I am afrocarribean and rosacea is rare for someone with my skin type. I've spent a fortune on cabs as sometimes I just cannot walk due to the pain in my feet. Uber is my lifeline for when I find myself somewhere where I just cannot continue to walk on. First time that happened to me I cried. I have since cried realising that I can no longer do a supermarket shop and carry home several bags. It provokes a flare. I can no longer go for a jog or even a fast walk it provokes a flare. If I try and tidy up the house in one go, it provokes a flare. Sitting in one place without moving provokes a flare. Any activity that puts my muscles in a sustained tension can provoke a flare.... I even had a deep tissue massage and it felt great but the next day I flared so badly I couldn't do another session. People keep suggesting yoga but holding the poses provokes a flare. As someone who once worked out it is pretty galling and gets me down, I also have hashimotos (happy days!) so the weight is piling on.

I had to retake my 2nd year at uni and am really struggling. It was also the final nail in the coffin of my 20 year relationship; my partner could just not understand, or he did but did not want to be with someone he would possibly need to look after. Actually it was his walking out which forced me to confront my deepening depression. It almost sent me over the edge and I have children and I just could not afford to get to the point of suicide, I had to struggle through. At the moment it is the fatigue that is the biggest battle.

Things I find helpful: Hot long bath soaks with magnesium salts as many in a day as needed. Think Cleopatra. Taking high dose magnesium, and B vits, stretching: I follow a lady on Youtube called Cocolime fitness she also has fibro and does stretching vids for fibro. It may or may not work for you. I have recently cut out gluten from my diet and I did feel it was starting to help a bit, especially with the indigestion and reflux I was having. Calmed things down. May have been placebo effect but who gives? Fell off the wagon over xmas but will definitely be back on it after new year. I highly recommend trying it out. Have you had your thyroid checked? There is a correlation between hypothyroidism and fibro. A lady I spoke to says acupuncture really helps so worth a try and massage may work for you.

Sorry for waffling. Feel free to private message me anytime you want if you're feeling low, don't keep it to yourself. I would welcome it. xx

robpw in reply to Alanna012

I get that I have a permanent flare up lol and the for good measure get other ones .. biggest thing for me is the ME so I’m on a constant downward spiral

Alanna012 in reply to robpw

So sorry that you too experience this. It really is tough! I really dont feel we are all getting the best help possible!

So sorry things are so bad for you, I think most of us on here can relate to your symptoms and how you are feeling - I know I can. I know you probably feel that things can not improve, but they really can.

Have you heard of Dr Leon Chaitow - there are a couple of wonderful books he has written that I believe may lift your spirits as well as help greatly with your health - and that is his book on Fibro & Muscle Pain and also his one on Candida (you would be so suprised how many symptoms that can be responsible for) the older version of his book, not the newer one as they have shortened it and missed out key info.

Over time our bodies get so worn down being constantly ill, so things end up spirling downwards, but Dr Chaitow said if you improve every aspect of your health, things will start to pick up and they really do.

You wouldn't believe what i have had to do to get to the stage I am at now, but I promise it really is worth it and I would do it all again.

We are here for you, so please don't feel your alone, we really do no how you are feeling, as we have all been there

Take care


Forgive me please for not reading all your responses to mine until now. I have been struggling with a nagging headache which prevented me from reading. For all those who responded to my post, you are indeed God's sent. You wouldn't know how this has made me feel. Knowing that I am not the only one on earth having all these weird feelings is so comforting.

I had to discontinue taking the antidepressant and the pain killers I was placed on because I became so useless to my child, I would sleep for hours while my child was hungry, so I don't want history repeating itself. A friend has suggested cbd oil too, am going to give it a trial.

Jazymay, when it was as if you were echoing me. Am struggling with everything you are experiencing but how you managed to be working and with children to look after beat my imagination. Well done. My health trainer told me the same thing about pacing myself and bank my energy. Where can I get chamomile flower please?

Allana012, thanks a millionfor yours too. A friend took my child for almost a week in September last year and it was a big relief. I don't have that support of someone coming to look after my child on a weekly. I was regularly taking magnesium and vitamin B but stopped about 3 weeks ago when I started to take homeopathy.

Littlechrissi1, Trudym and kitten-whiskers, am much obliged to each and everyone of you. Thanks very much for sharing your experiences with me. It makes a lot of difference to me.


I’ve had fibromyalgia over twenty years. I think I had it when I was a lot younger in my early teens . I have had everything you can think of all the symptoms you have said . I had a pain in my head that I couldn’t lay down to sleep for six weeks I was told it could be a brain tumour but it disappeared as quickly as it appeared. It frightened the life out of me . The one thing with fibromyalgia there is certainly a variety of symptoms. Try not talking get so depressed I think it makes the pain a lot worse . It’s easy to say I know but I’ve been there I’ve even tried overdose but having your stomach pumped is worse . ( Was going through a bad relationship as well ) Now I am trying alternative and natural things . My son swears by CBD oil but it’s expensive. So keep your chin up and try to cope and pray for a bit of remission. Things can get better .

I can relate to you too, I've gone from a person that used to be pretty active, was walking 8 miles a day at one point, now I'm lucky if I can go for a short walk with my Son and the dog.

I'm 44 but feel double that.

Don't mean to have ago but you really need to change your title.

I have firbo looking for help asap as i need to know what meds can help and any other remedies. I cant do this any more. I am so ill with Fibro and many other debilitating condition's. i cant bare to do anything and this is so hard. I cant sit lay,or walk without undescribable pain. i cry all day in my room and nothing will help Fibro has effected me from head to toe!!!!I want to go to sleep tonight and either wake up better or have pain that has controlled my life for nearly 2 years. I cant wear my clothes, shoes and anything touching my skin is sooooo bad !! I have just got worse drastically over the last few days an believe me i was very very bad then !! I am sitting on ice packs and they no longer help much but have no choice as it worse without. i cant stop crying and can not do anything throught the day and not of my conditions are being treated properly as they are all severe. I have no choice as i can not go on like this its cruel and no one is helping me. I have to go and lay down painfully now and wake to it all again. No one can see all this an thats the problems and i am getting made to feel guilty over what damage the Duloxitine has done to me with severe restlessness in my legs , feet , torso and arms. I am now unable to bare what i am going through.The damage has been intense and no one will help!! Frbro,arthritis, slip disc, head injuries and more and some of these contribute to what happening to me. I feel that the damage to my back is stopping the signals from going through my spine to my brain and i am in big big trouble. No one will listen and i have lost everything an everyone in my life, i look like a freak and have aged 20 years due to what i am going through , lucky there is no way of posting images but they were and still are very scary from being a model to being a worthless nothing. Nothing is worth carrying on for !! May be i shouldn't be saying this but the NHS re physical and mental health have let me down and left me suffering severally!!! Thanks to all of them I have nothing!!! lifes are being lost xbecause of the NHS and it will not stop till something is done!! My fight for 2 years is nearly over and i shouldnt say this but the sooner the better!!#I wish you all the hope in the world to get to a place you deserve to be!!xxx

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