Brain surgery led to fibromyalgia 😢

Hi everyone my name is dimplez and I've been diagnosed with fibromyalgia. I'm in my mid 20'S and I was perfectly fine before my Brian surgery besides the headaches and nauesa. I didn't have issues with my muscles or joints, now I suffer with muscle being sore, tight and get really bad knots in muscles along with muscle stiffness. I have alot of issues with my legs which affects my mobilty I have been battling with this over a year. I'm sure there must be a cure for it? I'm not taking pain killers I use heat as pain relief or try to keep myself mobile. Nights are really bad. Moods are low sometimes good. I experienced IBS too. Depression and anxiety Is part of it. Tissue and joint mobilization has helped. When I'm alot of pain usually my partner either massages me or presses into my tight muscles so they can ease off Abit, that's the only way I'm coping. I've been referred to pain management in august and I'm not sure if I made the right choice to be referred to musculoskeletal specialist. What do you guys think is this the correct decision? What should I do?


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46 Replies

  • Hi Dimplez18

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:



    I am so genuinely sorry to read of how you have been suffering and struggling and I sincerely hope that you can find some resolution and relief to these issues. I would question the viability of being referred to a musculoskeletal specialist, as Fibro is not that kind of medial condition? I have pasted below the *NHS Choices cache on the causes of Fibro:


    *What causes fibromyalgia?


    The exact cause of fibromyalgia is unknown, but it's thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (brain, spinal cord and nerves) processes pain messages carried around the body.

    It's also suggested that some people are more likely to develop fibromyalgia because of genes inherited from their parents.

    In many cases, the condition appears to be triggered by a physically or emotionally stressful event, such as:

    an injury or infection

    giving birth

    having an operation

    the breakdown of a relationship

    the death of a loved one

    With this in mind, I have pasted below the *NHS Choices cache on Fibro treatment as well:


    Treating fibromyalgia

    Treatment for fibromyalgia tries to ease some of your symptoms and improve quality of life, but there's currently no cure.

    Your GP will play an important role in your treatment and care. They can help you decide what's best for you, depending on what you prefer and the available treatments.

    In some cases, several different healthcare professionals may also be involved in your care, such as:

    a rheumatologist – a specialist in conditions that affect muscles and joints

    a neurologist – a specialist in conditions of the central nervous system

    a psychologist – a specialist in mental health and psychological treatments


    It may prove beneficial to go back to your doctors and discuss the other options that are open for your treatments? I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you


  • Thanks Ken

  • :)

  • If you have been diagnosed with Fibromyalgia, yes, you need to get with pain management specialist!!! Keep that appointment. They will help you manage your pain !

  • Hello and welcome!!! Sorry to hear what you have been thru as well as what your going thru.I can't really tell you what to do as I'm no dr. but I live in the US and my U go to a pain dr.I do understand there are a lot of differences in the US and the UK so I'm unsure of all your choices.I do wish you the very best and others will be on in the morning...I'm sure you will find some helpful answers.Take care. Peck.🐤

  • Thanks peck

  • I too have had brain surgery and in many ways it as helped me with all sorts of things. I was referred to Pain management met a quite frankly marvellous gentleman and I actually came out of a twenty minute consultation after three quarters of an hour. I am going to try reducing my pain management by reducing the morphine I have lived with for 5 or more years. Apparently after a while your body reacts to morphine by in creating your pains. Exactly what we do not want

    Best wishes


    Voluntary Administrator

  • Thanks for the advice Ginsing. They gave me Morphine to take home after my surgery. I never touched it. Just took paracetamol after my surgery. Did you get fibromyalgia after your surgery? I've got physio appointment coming up again as last time they discharged me saying they don't know what's wrong with me. Then I was referred to yorkshire clinc and neuro specialist was taking care of me, after all the blood test coming out normal. Couldn't find anything. I got swelling on my hands arms thigh and feet.

  • Hi Dimplez, Welcome, sorry you are going through all of this. But as others have said, if you have been diagnosed with Fibro you are going to need help with your pain management . Keep your appointment , you may find it will help you in the long run. Good luck and I hope you get all the help you need. Take care.

  • Hi my name is Ian and I am writing for my wife. She has suffered from fibro for some thirty years. She finds that massage aggravates her muscles. She tries to keep busy while not over doing things. That for her is nigh on impossible. She is on amytriptyline and Lorazapam light doses, and panadol. One thing that has taken years and numerous bowel specalists to sort out has been her IBS. I know what your partner is going through and I admire him greatly for sticking with you. We have met many who don't. I personally think they are weak, and only think of themselves. All the best.

  • Hi Lanrw ,Yes ibs is horrible you can't eat and feeling bloated all the time and stomach hurting. Docs gave me meds but didn't take them. I saw something on interenet that pasely eases of the muscle in the gut which caused the pain and it's good for digestion. I squeez 1 lemon and bunch of parsly in a blender and added a cup of water and blended it. It helped me and made me more hungry and shifted few pounds. Hope this helps

  • Oh yh and how does it aggravate her muscles? Does it become more sore?

  • Morning ,

    Bit of a different slant on this as I too have feet in both camps so to speak ( or should that be fingers in different pies ??) :-)

    Wondered if anything on the Headway part of HU site might be helpful ? Headway deal with issues arising from brain injury and illness and may have some other suggestions.

    Good luck


  • Hello! Dimplez 18, Welcome!! I'm new here to, about xi week I think? I'm preparing for The Candida elimination diet. Do you know about candida overgrowth? try reading it up on Wiki', Than--- on candida diet .com. the latter I've found to be the most comprhensive & sensible. Hoping very much for you a good outcome.

    Gateshead Girl.

  • Thanks c-49 I'm eating well and will defo check upon that. Stay blessed.

  • Hi Dimplez 18, so sorry you are suffering,welcome to this fantastic forum. It will really help you to understand your fibromyalgia, and get fantastic advice ,as I have. Especially on those days when you feel at your very lowest.

    You must certainly go to your pain clinic you need to let them find the right medication for you,as there are quite a few options,and you will find the right one for you. Hope all goes well, meanwhile ,chin up, and we are all here for you .xx

  • Thanks Marie. I'm reluctant taking medication due to the side affects.

  • Hello Dimplex, reading your blog" I fully understand where you are coming from, I started with fibro 14 years ago after a traumatic time in my life, so I do know where you are coming from.. Keep intouch with this forum you will get loads of help and positive advise especially from the Author ken, he,s a hive of info on this topic.The keeping muscles warm IS a good remedy, I go to hydrotherapy and I use a Jacuzzi a couple of times a week I find it really invigorating..Check before you try this because of your head surgery (I had a sub arachnoid but I can go in water).. Good luck and stay with us.. \with Fondest Nurse Gladys Emanuel (open all hours)

  • Thanks for the advice Caz. I had an acranoid cyst at the back of my head. Where did you have yours? I had two surgeries one on top of my head near my right eye just above and the other back of head near the spine. Did you get fibromyalgia due to the surgery? How do you cope with the pain and stiffness and struggle to do things because I live with ppl they don't understand my condition. How I feel and especially the mood change and one minute I'm ok the next I'm snappy become stubborn. Can't deal with people's digs and remarks.

  • Hi Dimpled

    I can relate to all your symptoms. I go to a pain management clinic and have a lidnocane infusion every 3 months which I find very beneficial isla i take pregablin for any breakthrough pain. Hope this information helps you

    All the best

    LLooney sue.

  • Thanks looney and What is lidnocane infusion? What's a Isla? Sory Just got confused a bit lol

  • Hi

    Lidnocane infusion is we're they inject lidnocane which numbs the nerves and reduces the amount of pain you get. I am due my second one in 3 weeks. isla was a spelling mistake it was suppose to say also. All the best.

    Looney sue.

  • Thanks. I'm not sure If I have nerve issues and I got nerve test done and it was clear.

  • I too had many tests and blood tests which came back normal and different medications before being given the infusion. Hope you get the outcome you need from your appointment at the pain management clinic.

    Warm hugs

    Looney Sue.

  • Thanks love. Hope you have a better day and paim free

  • Hi Dimplex & welcome to the site ☺ i can see you have some good advise already from others & nothing to add, just wanted to say hi ☺

    Luv Jan x

  • Aww thanks Jan. Hope your well Jan.

  • Hi Dimples 18

    All the previous advice is good. Only you can decide which is best for you.

    Genthe hugs and keep smiling through the pain whenever you can.


  • Just wanted to say thanks to all for your advice and hopefully from my experience I could help you guys to.

  • No Dimplex it wasn,t the draining process that caused my fibro I already had it then, the stay in bed lay flat for 9 days was a killer! Fibro started in 2001 when I watched my father die an horrendous death due to medical negligence, he was just 69 ..I knew during the time I was driving up and down the motorway to be with him daily that I wasn,t feeling good but I put it down to stress, it was only after I put him to rest and I started to tidy up his home and affairs that I realised some bodily functions were becoming difficult and I made appt with Rheumatologist. I used to suffer ankylosing spondiltits which was in remission BUt I thought it had reared its ugly head again, it seems the fibro I have is in the very same places but muscles pain were they meet the joints, the muscle tips are not "pumpin up" and so causing the rest of each muscle to hurt and ache.. Aquatic therapies have been the answer for me for both problems, I did need pain relief and injections at first for both problems but once they settled to a level I could manage I kept the therapies and very little meds..

  • So sad to hear what you had to go through. All I know it makes us stronger. I don't know what caused mine but I think the operation is the trigger.

  • Yes I agree, anytime someone has had "messing around in their head" IS a dangerous time in their life, as I said I already had fibro when my "bleed" was drained-no surgery really just a tube inserted after a Head dye test to find the bleed. I had ideas drugs had caused this as I had so many to trial and I,m sure many of them especially opiates; had a baring on that.. You are young you will mend, I,m 61 now and so not as quickly. And would you believe it I fell on Saturday in the garden prooning very overgrown roses and I landed in all the thorns!! Ouch, I wont, let them get so bad if we get 13 days of rain again like we,ve had recently.. Having a gastro later today to find out why I am coughing up acid!!

  • Hi

    I'm very sorry to hear of your health issues, especially at such a young age.

    Have you seen a rheumy consultant, as they can suggest meds for it if you want to try them. I found I was having bad reactions to them and don't take any like you.

    I use general pain killers and migraine meds. I am on anti depressants though, are you? It might be an idea to help you cope with the fibro etc.

    Going to a pain clinic can be helpful as some offer alternative therapy, also relaxation techs. Mine was so far away and such a horrible journey it wasn't worth it.

    I do take extra vit d and magnesium, as fibro sufferers are supposed to be lacking in them. I also use heat and cold and have a hand massager I use for a gentle massage.

    I take hemp tabs from Amazon, that have the chemicals in that marijuana have in, I feel these help me relax. I take herbal sleeping tabs and use Volterol gel too, which on a good night lets me sleep for about 4 hrs. I listen to talking books at night so that I relax and don't stress or worry.

    The mother page is good and the NHS has a web page on fibro too.

    I hope that you get the help you need and start to feel some benefit.

    Good luck and best wishes 😊🌺

  • Thank you so much for all the useful information fibropop. Love the name lol. I've not seen a rheumatoid consultant yet. Atm been referred to pain management and muscular specialist as I have problems with my muscles so I don't know if I made the right choice going to musculoskeletal specialist. No one here has spoken about it either. I don't take anything for my aniexty or depression I just let out of my system. That's how I've been dealing with it for the past 6 yrs. Will try the magnesium I've been told to have 2 bananas and you got your dosage of magnesium. Atm I'm using my husband hands as a massager and Ive got a electric blanket to keep me warm at night. Suprising I'm not taking any pain killers when I'm in pain. Just use heat. When I'm alot of pain and muscle stiff up I either go for a walk or get a massage done or use the electric blanket. Yesterday It was a emotional. My back muscle were stiff and couldn't get out of bed, didnt want to do anything and just wanted to be alone in my husbands arms. Today feeling better did a bit of shopping as im going to make fajitas whopp. Looking forward to it.

  • I hope the meal goes well.

    Take care of yourself x

  • I've just uploaded a picture of it 😊

  • So sorry to hear about your incident. Hope you didn't get hurt too much. Good to hear you didn't have a surgery not a good position to be in. I was guessing mine might be drug related that caused but wasn't to sure. What's opiates? I guess age plays a part. I've only been married for 2 years and within that year of marriage I had alot of health problems because of the archnoid cyst. I was bed bound within 8 months of being married had 2 brain surgery and my gp were giving me migraine tablets even telling them they are not working. My last pain killer before ending up in emergency was tramadol. Hated it. Now I'm dealing with fibromyalgia.

  • Hi hun,really sympathise with you,I was also fine until I had open heart surgery last March,was diagnosed with fibromyalgia in legs are my main problem as walking hurts sooooo much I have to sit every 5 mins.

  • So sorry to hear that diamond. I was really confused what was wrong with me it took them over a year to tell me Ive got fibromyalgia. Lucky you that you was told soon as. How are your muscles feeling? My muscles around my bottom are really tight which affects the joints near my hips so I struggle to walk. There is a muscle that is joined from your last rib to your hip, If that goes tight then your walking really funny like one of your hip sticking out. I look hideous when it happens to me. Tissue manipulation really worked for me then joint manipulation. I had to go private to get this done. There were days where I was crwalin up the stairs. So I don't know how bad you condition is. Whatever you do keep mobile I know it's difficult due to pain but I was told to push through the pain and I was scared to do it eventually I did it and could see my muscles easing and stiffness was easing off too. Hope this helps you diamond

  • thanks for your reply hun yeah it's mainly my hips back and numbness in my right leg I try solo hard to push through the pain but it's solo hard as I have to stop walking so often as I also have servere hyperhidrosis desperate for relief hugs

  • I hope you feel better. Going on walks have really helped me. At the beginning it was like impossible but I had to push through the pain and eventual the muscles eased off. Hope this helps. Use magnesium and deep tissue work. Try booking yourself for a massage. It really helps. We just got to keep picking ourselves up.

  • Sorry to hear you have fibro. Acupuncture helped me a lot I would suggest a sleep study a lot of people with fibro have sleep apnea I had a sleep study done about 4 years ago there is still pain but not as extreme.I was able to stop acupuncture mine also started right after brain surgery.


  • How do I get my sleep back with out medication Im going for a treatment which I will have to come off all my medication. So I need alternative?

  • If you don't mind me asking. How come you Had to have a brain surgery?

  • I had an uncontrollable epilepsy and hada portion of my right temporal lobe taken out.

  • What kind of treatment is it that you have to get off of meds?

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