Hi my name is Emily and I’m 21 years old I have been diagnosed with fibromyalgia for 1 year and I have been suffering with fibromyalgia and IBS for 5 years. My symptoms include agonising pain behind my shoulder blade and under my knee caps, nausea, diarrhea and constipation, bloating, headaches, belching after I eat, I also suffer with fatigue, dizziness and stomach ache. I struggle to sleep at night because I get acid reflux so I have to sleep with loads of pillows. I am suffering with a really bad flare up. I was wondering if anybody is going through this or if any body has got any advice of how to get through this.
Thanks
Emily
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Emilycooper123
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I'm sorry you are having such a awful time. I have bad IBS too. One thing that helped me was discovering I can't have dairy. Cutting it out has help a lot with my IBS. When I crack and eat dairy again it always makes my IBS worse. It may not be this with you but when I cut it out I saw and improvement in a couple of weeks. Sadly it has not helped my pain. Hope this helps.
Hi Gail, thank you very much for the advice. I am lactose intolerant so I have cut lactose out of my diet. I have the same problem as you it hasn’t helped my pain. Sorry to hear you are suffering too it’s awful. Hope you feel better soon
Hi Emily and welcome being in a flare isn’t very nice as most of us can relate too this. There are so many horrid symptoms of fibro most of the time I go with my body and rest until I pick up again but going through few days up then down at the moment , I’m having some more bloods done to check if anything else is going on. I had mine done a year ago so doctor said we will re do some again , have you visited your gp lately for a catch up ??? Mite be worth a visit to put your mind a rest. Hope you get some helpful tips from our members nice to have a chat with people as well. If you would like to lock your future posts normally members will respond more as then it is only seen by our forum and not open to other engines on the internet. Are you able to work /college or you at home. Very hard for you younger ones to be diagnosed at an early age , I do hope you have some nice support in way of family or friends. Sending hugs xxxxx
Thank you so much for your reply it really cheered me up. It’s awful living with fibromyalgia I’m sorry to hear you are suffering also. I have recently had my blood results and they were clear. Yes it’s lovely to read other peoples advice and to hear that I’m not alone in this. I visited my GP and I’m currently on Amitriptyline for my fibromyalgia and Rabeprazole for my acid reflux. Thank you very much for the advice I am new to using this haha. I am currently at on a work placement at university but I’m struggling not to have days off work. It is hard work dealing with fibromyalgia for anyone, it bring you down being ill all of the time. I just want to live my life like anybody with fibromyalgia does. I have brilliant support from family and friends. I hope you are dealing with your fibromyalgia and I hope you feel better soon. Sending hugs xxxxx
The fibromyalgia is very bad I’m with fibromyalgia 4 years and is not much they can do only medicine for the pain you are only 21 years old you should be enjoy like but I new fibromyalgia is so difficult to live with I hope get better soon
I know fibromyalgia is so hard to live with. What medicine do you take for the pain? Thank you very much. I hope you feel better soon. I am going to try cbd oil I have read all of the reviews and I will see if it works I will let you know if it works 😊
Medicine is paracetamol and gabapentin 100 mg it’s sometime can give a lot sleeping they are very strong tablets and I do injections to on my Gp to help the day life if you don’t do injection please asked your Gp it can help a lot take care all of have fibromyalgia
Welcome Emily. IBS unfortunately seems to be a combination many people have with fibro and I am one of them. Mine used to be of the diarrhoea type but since being in so many painkillers it has gone the other way and is more constipation. The gripping pains have got much better since I was given Pregablin for the fibro pain. A dose of lansaprszole twice a day has helped with the
I too find GORD but like you I have to prop myself up in three pillows. I have found eating smaller meals and eating earlier has helped. I also find that too much dairy upsets me as it is too rich so I have had to cut out yoghourts that I loved and I only occasionally have ice-cream and then in small amounts. Cheers your food slowly and don't have chewing gum as that can. make the belching worse. According to the ear, nose and throat specialist who diagnosed my GORD the worse thing you can have is peppermint which alot of people take who have indigestion. He explained it relaxed the oesophagus too much allowing the acid to rise and burn the throat. Anything with sorbitol innit can also act as a laxative.
I find if I am going through a flare it always upsets my stomach so I stick to very plain food and things that are easily digestible like soup. I hope the pain soon eases for you.x
Thank you very much for your response. Mine depends it can be diarrhoea one day and constipation another day. I will ask my gp about pregablin for fibromyalgia and I will see if that might work better, I am currently using amitriptyline. There is nothing worse than sleeping with 3 pillows but at least it stops the acid. I also find that I can’t lie on my side and my front, I have to lie on my back. Thank you very much for the advice I have chewing gum all the time and I take peppermint rennies. I will try to stop taking them and hopefully it might get rid of the acid reflux. I will also try eating plain foods. Thank you so much for your advice. I am going to try CBD oil it is suppose to change your life if you suffer with fibromyalgia. I will let you know how it goes. Thank you. I hope you feel better soon xx
I’m in the same situation if I eat or not I feel sick 24/7. It’s like have the stomach with a stone of fire and nausea. I feel difficult eat. My meal are simple like salad with olive oil or pasta gluten free without sause , not dairy. I stopped also to eat kefir but nothing is changed. I take probiotics and others supplements include cbd oil. My hospital doctor has prescribed omeoprozole but makes me more tired and sick. When I go abroad I eat normally and I feel fine. Depression is related with my ibs. I’m so tired to feel sick, in pain and without energy. I’m sorry to bother you with my problems.
Sorry j should have mentioned the problems I'd had before..
I had surgery as a last resort, it cured my acid reflux but now all the muscles in my oesophagus don't work properly so I always have to have a drink next to me when eating for fear of choking!! This has happened a few times, not sure whether op caused this or not.please take care. Love and hugs Lynne xxxx
I’m so sorry to hear you are suffering to eat without drinking with it. That’s awful. Take care. Love and hugs Emily xxxxx
I'd had IBS on and off for about 35 years with it getting worse since Fibromylagia set in. I was constantly bloated, horrible.
I cut out gluten over a year ago and although that helped it didn't stop it. I started taking a really good probiotic ( Solgar) and the IBSdisappeared almost overnight.
I've tried eating gluten again, just for a day. Big mistake so it's the combination of no gluten and probiotic that has worked.
It’s horrible being bloated all of the time isn’t it. I will have a look into solgar and give it a try. I have cut out gluten made no difference really to me to be honest. I’m so pleased to hear that this method has worked. I’m so glad your feeling better. I hope it works for me too. Take care xx
Hi Emily, I can relate to what you are saying as I to suffer with both fibro &ibs. Both are just awful conditions and many don't understand what it is like living with them. I am 23 and am now struggling to walk due to the pain in my legs and suffering with ibs just makes it a whole lot worse. My advice if any, is to try and stay strong, be very strict on the foods you eat in which some foods can make ibs worse, and if possible try to keep moving and gentle exercising, swimming is a personal favourite of mine. Here if you need to talk xx
Dear Emily, awful to hear from someone so young! I am just coming out of a 2 year struggle that started with IBS about 4 years ago, then had PolyMyalgia Neurotica (PMR) added clsoe on 2 years ago. Then a weird and tricky heart beat was added and I was a shipwreck!
I have always been a fit / active / sports oriented man (old man now at 69) and I found this lot difficult to deal with, especially at the stage with the diarrhea (uncontrolled!) turned to constipation and I ended up in A & E one morning at 3am with doctors having to carry out the most awful process to correct things.
Luckily for me, my PMR reacted well to a fast track course of steroids and adding to that I watch my diet like a hawk. I drink a litre of beetroot (with 10% apple in it) juice a day (some colourful effects, but good), with V8 instead every 3rd or 4th day, eggs (no bread anywhere) for breakfast, a salad with humous for lunch every day and plenty of veg with a small steak for dinner. Easy stuff, but my jelly-belly seems to have settled well.
So, a kind of similarity with you. For the worst 6 to 8 months I couldn't get out of bed, get dressed, get up out of a chair . . . and other rather more embarrassing things . . . by myself. Sleep was only possible in 10 minute bursts as every movement was agony in every joint. My hands were so painful & tender that I had to sleep with my hands waving in the air (bloody weird eh!). I also found out that there were people out there who were suffering more & longer than me. Now I just (almost happily) accept the rheumatic pain I have in some joints. I sincerely hope you get through this lass. All the best.
Ah Emily, I meant to add that initially I was put on all sorts of pain reducing medication (stronger and stronger as time went on) until it was sussed that these were causing more problems (like severe constipation) than was acceptable, so ALL pain relief stuff went down the drain. Holymoly, that was fun for some months!
HI Emily. I am so sorry to hear about your health problems. Have you been tested for Celiac Disease? Myself I though I had very bad IBS, but it was actually Celiac disease. You can ask your GP for a blood test. Since going gluten free my stomach symptoms have improved 90%. Another culprit could be lactose in milk, it causes similar problems. Good luck!
Hi, yes I have same symptoms as you and found that there are many foods that make ibs worse. I keep a food diary to keep track of what I eat so I can refer back to the likely culprit.
I use Cbd oil which I find helps with the pain. Quite expensive but not worth getting the cheaper ones as they are too weak to work.
I find all pain meds from NHS cause side effects especially constipation which makes tummy worse. I find over the counter lactalose very gentle and works well. Don't be confused about similar name to lactose as I can't tolerate dairy. I don't react to this.
Hi Emily. I'm sorry you're coping with this at such a young age. My daughter has M.E so I know how awful it is to suffer so young. I've had Fibro and M.E for 14 years now. Have you been referred to a pain clinic at all? Its worth a referral. With regard to IBS have you also tried cutting out gluten? I eat the Paleo way and though it doesnt help the Fibro pain or M.E energy I do feel better somehow.I suffer from acid reflux too and I did have a few years of IBS after a dose of Salmonella.I fund the Paleo really helped settle things. Also taking ALoe Vera Juice every day soothed my burning gut. Have you had a Gastroscopy to rule out physical things and a blood test to rule out H Pylori?
Also with regard to the pain research CBD oil.I'm now taking it for pain.I've been on it 3 months and am cutting down the Morphine under docs supervision. CBD really is helping my pain.Its perfectly legal over here and a web site called Simply CBD sell a good product at a good price. Some of them are ridiculously expensive.
I find very hot baths ease my pain and we invested in a spa bath which is ace for the muscles. I also use Magnesium salts in the bath which help.Magnesium is better than Epsom salts.You can buy huge bags of it on Ebay.
I bought an expensive bit of kit called an Alpha Stim (Microcurrent ) Machine (Have a Google but go to the UK site .its better than the AMerican one and theres a section on Fibro there and how the machine helps the pain). You can try them out first.There are listed therapists who hire them out.I invested as it also really helps my pain and as I've got it for life it was worth it.
I'd consider getting private blood tests done thru Medichecks: Vit D, B12, ferritin and folate, plus full thyroid tests ( TSH, T4, FT3, FT4, antibodies) to test for Hashimoto's autoimmune disease( hypothyroidism), and post results on sister Thyroid Uk forum. Many of your symptoms could be Hashimoto's with poor gut function and absorption.
I am so sorry you are going through this. Yes, I am exactly the same, suffer with Fibro and IBS. Had IBS for over 30 years but is worse since being diagnosed with Fibro. I find when Fibro flares up my IBS flares up and it can take a while, days, sometimes weeks for it to calm down. I know its hard but resting as much as possible during flare ups really helps me. Sometimes, I have to take days off work just to get that respite because I feel so exhausted and worn out with the pain and boating, and hurting all over and needing the toilet. When the flare ups go I try to enjoy life and forget about it and just keep going. There is no simple answer I know, frustratingly, but I empathise and wish you well. You have a lot of people on here who are incredibly supportive, so you are never alone. We are a family of support and I know you will thrive and enjoy your life and these conditions and symptoms are horrid but our resilience together will always get us through. All the best.
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