Hi, I’m Holly. 32 years old & ive been living with on and off chronic pain since my very early twenties. I’ve been pushed from pillar to post with it, I’ve been told I have got ulcerative colitis. Only to have exploratory surgery that said the opposite. I was then diagnosed with IBS which I couldn’t quite believe was the only reason I felt like this.
I’ve been on tramadol for a few years but didn’t like the feeling any more so when there was a break in the pain I stopped . I gave birth to my second child almost 2 years ago and my body has never recovered.
I have been ignored by doctors , been treated like an addict when I asked for pain relief. I was told to drink peppermint tea , o was told I was “a medical mystery “
I had crippling pelvic pain and was really loosing my mind with not being believed. So my partner insisted we went to see a private gynaecologist. I had a hysteroscopy & a laparoscopy for suspected endometriosis. Instead of endo they found I had pelvic congestion syndrome . So shortly after those operations I had a pelvic vein embolisation. Since that , the pain has become even worse.
I went back to my doctors , I went back almost once a month to get them to believe me. Why does no one believe you about chronic pain? I felt like I was so alone. Recently my gp has told me he thinks I have fibromyalgia. Which fits my symptoms, can’t say I’m overjoyed but it makes sense to me why my life has been so blighted by pain.
So now I’m waiting for a diagnosis on that from a rheumatologist, I’ve also got to have a ct scan because I need more veins emobolised.
On top of that my cortisol levels are too high .
I’ve started Gabapentin 2 weeks ago and I feel so much worse, I can’t sleep, I can’t be still & my stomach is agony.
I just want to find other people like me & hear their stories, I want to know there is a light at the end of this.
Sorry for the whole long essay , it’s been a bit of a rubbish year.
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Hollyol
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sorry to hear you been thro so much. i had to get my kids health visitor to help me with my own drs to get them to listen and actually diagnosed with fibro. people dont seem to believe in what they cant see,touch,hear,taste or feel even drs. but drs are not like they use to be. reliable, thorough,kind,caing and helpful. they only seem to be intersted in getting paid and moving on to there next patient. maybe your partner can help u get in touch with drs about getting u on different meds? if u need someone to talk to i am always here
Thank you - I’ve finally got in touch with the right people, through a chance meeting with my GP about something (I though was unrelated) he made me a rheumatologist referral and the rheumatologist knew at once that I was showing all the signs of Hypermobility, cfs and Fibromyalgia. 2 days into a diagnosis now, I’m feeling relieved that I was believed. Why do we have to fight so hard to be heard? Xxx
Have you any family history of hypermobility and other health issues? Have a read up on Ehlers Danlos Syndrome it might be of interest to you... hope this helps x
Hy there Holly you hv been through it duc and yr not very old to have all them problems. I was said to hv ibs cs my stomach was killing me had loads of problems bn in hospital twice over it they did nothing came out with more meds I'm on gabapentine hv bn for over twelve months they keep high in them think I need to hv some else to try you get fed up of taking meds iv had fibro for 5 years now sorry to say it does get worst duc. You take care duc sorry to hear yr in so much pain you don't no wat to do with yrself. Luv glor xx
I’m not sure gabapentin help me either, been on them for a while and I still hurt.. I just have to remember to take them at the same time each day which is so hard to remember through the fog. X
Hi Hollyol, a good rheumatologist will definatly benifit you, as fibro seems to be a combination of various things, and they would be the best people to try and get to the bottom of it, hang in their, and keep the chin up
Hi holly your not alone and you come to a great site for advise and surpport I am the the same as you I have a real bad gp and not had the help and surpport I have need I met someone on here and she probley saved my life and has helped me so much just from reading what you say have they ever looked into another 1 called eds find out a bit about that it might be you have that as well another thing I would say look into is Cbd oil some people are really negative about it because what it is made from but you don't get high of it and has helped me loads and all the painkillers they have put me on have done a lot of damaged to me if you ever want to ask me anything then go ahead if I can help I will I wish you the best of luck with every thing hope this site helps you and you can start to live a bit more of a normal life again for you your children and your other half no that your not on your own and don't worrie about gp I lost all faith in mine think it hard to find a good 1 nowadays good luck from Mark x
Hi Mark, well I know now that I have Hypermobility, I know that can be connected with eds? I didn’t have long enough to find out what type of Hypermobility I have but I have the rest of my life to figure it out I suppose.
I’ve just finished a bottle of cbd oil and found it helped . I’ve always found that marijuana in general helped my pain. I think this site is going to be really helpful to me. I posted once and then I got overwhelmed with the actually accepting I’m ill. But I’m back now, with a diagnosis finally after all these years. Thank you for your reply x
Sorry to hear your pain history. You are definitely not alone. My own background sounds very similar to yours. I was diagnosed with IBS at the age of 18. I had always suffered from excruciatingly painful periods (May I ask do you find your symptoms and pain increase just before and during your periods?) I was investigated at age 19 for Crohn s disease (as my auntie has it) but nothing was found. After my children were born I had 2 laparoscopy s to look for signs of endometriosis (again nothing found!) And told all the pelvic symptoms I have were due to the IBS. I was given many medications for IBS, but none of them helped. I also suffer from irritable bladder and pain in my bladder. After a lot of research on my part, I suggested to my doctor that it may be fibromyalgia and the list of symptoms seemed to make sense (fibrofog, tiredness, feet pain, pelvic pain, sensitivity to strong smells, bright lights and loud noise, ) I paid to see a Rheumatologist privately and he diagnosed me and offered No advice whatsoever!! My GP prescribed amitryptiline at bedtime after I had already tried lots of different pain killers (that didn't work) , but that made me feel " spaced out" , so I now manage my symptoms by carefully pacing myself (which must be very difficult for you with such young children) and taking gentle exercise.
If you haven't already looked at the mother website for this forum, you may find some useful information. fmauk.org
Good luck with your rheumatologist appointment, May I suggest that you take a list of your symptoms with you and any questions you might wish to ask, and take a friend or family member with you for support. Take care xxx and if you have any other questions then there is usually someone else on here who can help xxx
Oh wow, our symptoms could be twins! So many common factors between us here.
Yes I get so much worse around my period, that’s why I truly thought I had endometriosis. It gets to unbearable levels of pain where I think I might black out.
Currently I’m taking gabapentin and codeine for the pain & mirtazipine for sleeping. I feel like symptoms are managed but not quite under control. Luckily I’ve finally been made a referral to gynaecology, physio therapy and the pain team (which my GP said didn’t exist but now magically they do) 3 days post diagnosis and I have some hope now finally. Although I wasn’t expecting to be told I have Hypermobility and ME too. At least I have a name for it and hopefully won’t be accused of being lazy anymore. I’ll join the mother forum, it would be so helpful to get tips on how to pace myself because I’ve overdone it post diagnosis I couldn’t stop moving and walked for miles and now I hurt. Xx
It is so important to learn to pace yourself, and put your own health first, learn how to say NO when people expect too much from you.It is so tempting to overdo things when you have a day when you are feeling ok. I know how difficult that is to do and put into practice in everyday life, especially with a young family, and I have always been one of those people who puts everyone else first and I always come bottom of the list!! I now plan my days very carefully, always allowing some "me" time. I attend a hatha yoga class once a week and take my dog for short walks each day.
Have you also asked your doctor about a pain management program? I found an online course written by a gentleman who lives with chronic pain, paintoolkit.org which explains how to manage your symptoms. If you go to the Menu at the top of the homepage on the paintoolkit website, you will find a section called Tools, which explains how to manage your life in order to reduce your symptoms.
Any other questions, there is always someone around to help answer them, take care xxx
I’m learning slowly to say no, today my family have taken my children and I’m in bed with a cuppa and a hot water bottle for my back. I too like to take short walks, I think that will always be my main physical activity.
I’ve been recommended to try yoga, I’m not sure if that’s ok with hyper mobility?
Can I admit something to you?
Well ever since my official diagnosis on Monday. People keep saying things like “at least you have some answers now” and “things will get better”
I don’t want to be ungrateful as I’m lucky enough to have family close by.. but I feel like they are missing the point about how shattering it can be to have a diagnosis for conditions like this which have no cure. I’ve also had “it could be worse”
It makes me want to hide,
Or “great news you got a diagnosis “
I don’t feel like CFS and Fibromyalgia are great news at all.
My rheumatologist has made me an appointment with the pain team, so hopefully soon I’ll be able to use their expertise to find a balance in my life. For now though I wish people would think before they speak. Xx
So sorry to hear you have been through all this and had trouble with getting healthcare professionals to listen to you. The stigma and judgement is something that many of us have experienced and it is so wrong but unfortunately seems to happen. If it's a problem at the GP surgery you could consider writing to the Practice Manager about how you feel and to highlight the lack of healthcare you have encountered. Also FMAUK can send a medical pack to your GP surgery if you complete the following link and this may help;
You've definitely landed in a good place to talk to others who understand and many members say this is a great online support network for tips to learn to live with Fibro. I see you've tried a few medications and currently on Gapapentin , sometimes if can take a while to find the right combinations of medication that work for you. I personally didn't find Gabapentin a help but it is clear from the community that what works for one doesn't always help another. If you are not sensitive to medications you could try a pain relief cream called Capsaicin (link info below) but it would need a 24hr patch test I would say and also it can rub off onto others so do be careful. I would also use gloves as from personal experience getting it in your eyes can be very stingy indeed, but it is definitely worth investigating.
Thank you so much Emma, now I have a diagnosis I feel vindicated and hopeful not to be dismissed by doctors anymore.
I posted here initially and then it all became too real accepting that I’m ill and might not get any real answers or insight.
Then I went to see rheumatology and they told me I was suffering ME, Fibro, PTSD and Hypermobility. It makes sense they were all related all along. I’m hoping that the pain team and physio will assist me to get the balance I’ve needed for years. I feel frustrated I was shouting these symptoms at my doctors for years and no one put two and two together for so long. Hopefully when I go back to see my GP at the end of this month we will make some progress. It’s such a lot to get my head round, but I’m going to make the most of this site and I’m so glad to have found a community. Most of all these symptoms make me so lonely.
I’m proud that I’ve maintained my life so well for all these years being so ill. It really shows you your inner strength doesn’t it? Xx
Holly you are not alone. I was 30 when I got pregnant with my daughter. At first I thought it was high hormones good for my baby bad for me. Sorry I am so sleepy 😴 I will come back after I take a nap.💤
Holly I did write more ....wait I had problems posting so I copied it no if it will paste here that would work.... Holly you are not alone. I was 30 when I got pregnant with my daughter. At first I thought it was high hormones good for my baby bad for me. Sorry I am so sleepy 😴 I will come back after I take a nap.💤
Okay had lunch so more awake now. I should have reread your post...some of it just came back to me. I too have ulcerative colitis but no surgery for that. Why did they do exploratory surgery on you? I too had endometriosis but no surgery. I use to have the worst menstrual cramps every time it started off to the school nurse we went (I have an identical twin sister) and my mom would come and bring us home where we laid on the bed with the heating pad and made frequent trips to the bathroom 🚽 because of the cramping was so bad. My mom finally took us to the doctor and he said we had endometriosis and prescribed low dose of birth control pills. I asked him about a cure and he said having children would make it better. The birth control pills decreased the extremely heavy flow and the really bad cramping let up to a mild cramping. I think those doctors went over kill on you with the surgeries. I have a few surgeries under my belt. Gallbladder in 04 it had stopped working right, bladder stimulater for interstitial cystitis which my body was rejecting the leads so ended up coming out, then thyroidectomy because of thyroid cancer in 05. Anyway when I was 30 I got pregnant with my daughter and I got 24/7 sickness with my daughter I was working full time as a RN at a nursing home. It got to missing one day a week then 2 days then 3 days and finally they put me on lite duty and I was back at work. Then I started having preterm labor and I was so sick on my stomach. After the 3rd run to the hospital I asked him about work and he said I needed to give up the ghost on working. Long story short after I had my healthy daughter I felt better but I felt like something was off. After moving from MO warmer climate to Wyoming cold dry high altitude climate and seeing every doctor were recommending and being scanned head to toe, undergoing a battery of tests and then some and saw all the ologists I finally was diagnosed with fibromyalgia and CFS in 94 and by mid 95 I had to give up working because of the fibro fog and lack of energy. This is a lonely disease which likes to bring other diagnosis to join in as you know. There is a lot more to my story but will end with this for now. With my stomach issues 92-pregnancy sickness better after birth. 94-gallbladder stopped working after surgery better 96- gallstones took 6 months to feel better then in 98- 3 ulcers, bile in stomach and stomach acid in esophagus made a lot of ER runs and one doctor said I don’t know what is wrong with you nobody does that is why your medical records is as thick as a phone ☎️ book 📖 that long story is for another time. I feel like you and I have a lot to talk about. But my husband is in the hospital feeling miserable. Will write more at a later date. Hugs 🤗💕🦋🌸🌿 now if it will send that would work out then. I don’t know 🤷🏼♀️ where the other one went to?
Thank you for your reply, I’m sorry it took me so long to read it. I’m afraid I went into denial for a while and didn’t want to talk about it until I had a diagnosis.
You are amazing managing to keep working for so long. I haven’t worked since I was 25 and became a mother. So many symptoms all acting slightly differently but being part and parcel of one another.
Hi there and welcome, I think you will find joining the forum really helpful as I have really found this helpful chatting and listenening to all our members with our experiences and stories. My you have been through a lot let us know how you get on with the rheumatologist. I know a lot of members do have other conditions with their fibro as if that’s not enough, I have sleep apnea and cfs as well. I do have days where I really see the light at the end of the tunnel and I certaintly enjoy them , then like now I’m on my 4th day of feeling rubbish. Not the best of years like yourself but I do chat here and then I realise how many people live with this condition and I feel re assured again. Everybody is different and lots say trial and error with meds , im currently taking duloxtene 60mg found because I got anxiety due to changes with my life it helped calmed that down a lot, it is supposed to help with fibro, I also take prescription codiene up to 60mg a day but doc says try and leave it off when I can as can be addictive. I really feel for you with having young children I read a lot now when our bodies go through childbirth , trauma ie car accident, stress related, can actually trigger off fibro. We have lovely members who have already replied so hope to see you posting again xx
Hello! I got a massive intense period of denial after my post grew months ago.
I’ve finally been seen by rheumatology. I’ve been diagnosed with CFS , Hypermobility and Fibromyalgia also I have gynaecology issues still and ptsd. I’m relieved to have a diagnosis, I’m 3 days post diagnosis and still in a bit of a fog (aren’t we all always?) I think this community is going to be really useful to me, it’s so helpful to hear other people’s experiences and reassuring to see so many of us are having the same symptoms.
I’m just so so so tired, keeping up with my toddler is hard work. I’m doing it though and he’s happy. I long for days in bed and think without these children I would be much worse off .
I’m in gabapentin 600mg a day and codeine + mirtazipine for sleeping. I think it’s making it manageable I’m not sure though, I’m not sure if the gabapentin is helping. I’ve got weird twitchy eyes sometimes. I know it’s early days for me, I’ve been ill for over a decade but only had a name for it for 3 so I’m trying to be kind to myself . Which is hard because I want to chastise myself for being lazy a lot. But I know I can’t help it. Xx
Hi Holly welcome you are not alone and you’ve come to the right place. I’m sorry you’re in pain. I think you need to go back to your dr/ Rheumatologist to get you medication readjust to find one that suits you. Sending gentle hugs 🤗
I’m finally in a place where I have a diagnosis and the right referrals have been made, so now is a waiting game to see the pain team and physio.
I had a three month period of denial but I’m welcoming my diagnosis into my life now and trying to figure out what it means to my life xx
As others have said, a referral to a rheumatologist might be helpful.
I was told I had IBS for 30 years and eventually I realised it was gluten affecting me. I ditched all gluten, take a good probiotic daily and avoid all other foods that I know disagree with me ( there's a long list !) I've managed to get rid of the pain and bloating.
I've had problems with medication side effects so don't take any prescription meds. Took a while to find an OTC painkiller that works. I also take turmeric, selenium and the 4 supplements recommended by Dr Myhill ( if you google dr Myhill Fibromylagia you'll find the info) I also take hemp oil daily. I reckon if each little remedy I take helps 5%, adding all the 5%s up is making a difference. I'm managing quite well without prescription meds BUT fibro affects everyone differently plus I'm retired & live alone so pacing is easier, I've no deadlines to meet. Still have bad days when washed out and in severe pain but I have noticed they're fewer and I seem to recover quicker.
Take time to look at how fibro is affecting you and work out any little things you can to help your symptoms.
I think I’m slowly getting an idea of what foods make me suffer with my ibs. Garlic, onions, and oily food are definitely on the list. I went vegan a little over a year ago so my diet is already incredibly healthy. As you say though- certain foods are definitely triggers.
I’ve been terrible at pacing myself- always pushing myself to be “fun mum” which ultimately comes to my detriment. I’ve got a diagnosis though now, so it’s a start. All these years of being told @ibs, depression , hormones “ and all along it was fibromyalgia, CFS, Hypermobility and pcs. I’m glad I have an official diagnosis, because no doctor will tell me I need peppermint tea again. Have you ever tried the fodmap diet? I was going to try it with the help of a dietitian but my other issues got in the way. I’ve got some good probiotics and I’m going to make the effort to take them daily. X
I’m so sorry I’ve not been back in this site for a while, I went into a period of denial. Then I went to rheumatology and got my fibromyalgia confirmed. I’ve also been told I have Hypermobility and ME so I’m very lost at the moment .
Vindicated in a way as I knew something was wrong with me all along. However it’s a lot to take in and I wasn’t expecting such a huge diagnosis. In fact I’d prepared myself to be sent away with nothing again.
I’ll reply to everyone who has been kind enough to share their time and knowledge with me very soon. Thank you everyone x
Hey Holly, I feel ur pain babe. I have been in severe pain for 3 years. The doctors make me feel like I'm making it up. I'm on oxycodone and tramadol which just make my pain tolerable 50% of the time. They just tested me for addison's disease and I was fine. You are not alone. If you want to complain or b*tch I am here to listen. I understand
I do want to complain and moan and bitch, no one realises how shitty I feel and how hard I fight to appear normal. I wear a lot of make up so everyone thinks I’m ‘ok’
So they say things like “great that you got a diagnosis “
Really?? Is it great that I have hypermobility, CFS & Fibromyalgia oh yeah not to mention pelvic congestion syndrome.
Or “it could be worse” which is totally insensitive because it feels pretty awful to me to be in pain all the time.
Or they say “don’t the pain killers make you worse” like I’m taking them for fun, totally negating the fact I take them because I’m in pain. For the last 2 years I’ve been treated like an addict by my doctors. It’s so hard and so lonely being in pain. Why do people prefer to think your making it up than actually validating you and empathising? I always try to be mindful and give so much sympathy for people when they have a cold or toothache and everyone seems to be so blasé with me. I wish this illness would go away
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