New girl

Hello everyone, I'm Nicola, I'm 23 and I was diagnosed with firbromyalgia at 21 after years of undiagnosed joint pain which was put down to anything from "growing pains" to "depression".

I have since tried a range of medications including cocodamol, fluoxitine and sertraline. I currently take Amitryptiline 10-30mg ( I control the dose based on how bad I feel), Gabapentin 200mg 3 times a day, Paracetamol 1g 4 times a day and I have MST and oramorph on prescription but that's because I also have Crohns disease.

I recently had an allergic reaction to an infusion treatment I was receiving for my Crohn's and since then things have really kicked off. My main points of pain are my lower back, my hips and my knees, along with inflammation in my hands. I went to the doctors last week to try and address this before it went out of control but she couldn't be sure if its the Fibro causing my pain or if the joint pain is actually related to my Crohns which is flaring quite strongly at the moment. Her only suggestion was to take MST (continuous release morphine) for the next few weeks while I wait to start a new Crohns med to see if it settles. This is alright while I'm in the house but I find it quite difficult to do if I have to get up and go somewhere as the side effects make me feel very drowsy and light headed.

I hope to learn a lot from the people here and maybe make some friends who understand what this is like, particularly as a young person being unable to walk some days. I also hope I may be able to help some in a similar position as I learn more myself.

35 Replies

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  • Hi there

    Welcome to the forum ๐Ÿ˜Š I'm sorry to hear that you have a double whammy of Fibromyalgia and Crohns Disease as well.

    I was diagnosed with Fibro at 20 but am now 55.

    My personal opinion is that the pain in your joints and back is Fibro and the inflammation is the Crohns. Fibo does not cause inflammation. However, I am not a doctor and never profess to be one. I'm just speaking from my own experiences.

    I can completely understand that you are struggling with your meds making you feel so groggy.

    One thing you can try is to take your Amitryptyline around 6pm. This really does lessen the grogginess the next day.

    As for the Oramorph if you take it regularly, you should find that after a week or so the light headedness will lessen.

    We have members of all ages here. The more mature ones (like me ๐Ÿ˜ฌ) and the younger members like you and plenty in between.

    You may like to have a look on our mother site for lots more information fmauk.org

    I look forward to chatting with you again.

    Lu x

    Volunteer Administrator

  • Hello, thankyou for the welcome :)

    Altogether I have Crohns, Coeliac, Asthma, Osteopenia (thankyou steroids), too much calcium in my blood ( no-one can tell me how its possible to have osteopenia and high calcium) and a fast heart rate which is currently under investigation. I lucked out with my body haha.

    I was thinking along the same lines, but according to the doctor I saw the other day Crohns inflammation can cause back pain, so who knows?

    I have been on the Amitryptiline for about 2 years and when I was just taking that and the gabapentin I wasn't finding myself feeling groggy, but when I add in the MST I find I'm groggy well after it's meant to have worn off, and I'm supposed to be having it every twelve hours. Unfortunately I'm home alone in the days so I haven't been able to start taking it in the mornings as well as the nights yet as I just wouldn't be able to function.

    As a younger person, I hate the look of judgement I get on buses etc when I'm unable to stand up and let an older person sit down. Even if I have my crutches with me people tutt and glare, but, the people who tutt and glare don't move either. It's tricky having any illness but invisible ones make you feel so isolated don't they. I hope I didn't make you feel upset with what I said about young people! I love talking to people of all ages, but I do struggle finding people who were diagnosed young.

    Thankyou, I will take a look. This is the first UK forum I have found, so very interested and excited to get involved.

    Nicola x

  • Hi Nicola

    Many of us have lots of other conditions as well.

    Of course you didn't upset me. In my head I'm still 21 ๐Ÿ˜

    I agree that it's good to speak to people of your own age.

    I find the whole invisible illness a big struggle as I think many of us do but I completely understand how hard it must be for you being so young.

    You'll love the forum. We have some truly wonderful members.

    Be kind to yourself and as Jan says listen to your body.

    Take care

    Lu xx

  • I've been diagnosed with fibromyalgia and had 2 brain surgeries which might have triggered this off. I'm 25 and I know where your coming from. I used to attend gatheringa and sit on the chair and would see elderly lady come In and I'm in the same predicament. Many ppl don't understand. I've got ppl saying your so young and you have given up now what will you do when you get to our age. You get really hurtful comments and struggle to deal with them. No one will understand til they go through it. Never test a I'll person. Your not alone. We all are here for you.

  • Hi Nicola & welcome to the site , I'm sure you will get lots of help & support & love the site like we all do. It's great to have someone really understand what you are going through with all the complex issues Fibro continues to throw at us. Garaunteed to make friends.

    Sorry to hear you are so unwel & although I don't know an awful lot about Crohns I have worked with ppl.that have had it, so I know how painful this can be & i think if you have anything else wrong with you medically it make the Fibro worse because all the pain you have with ie Crohns, arthritis etc. Is intensified with the Fibro.

    Lu has given you the best help by what she has said from her own experiences. So I can't add anything else to that except to listen to your body & rest when it tells you to. Don't force yourself to do anything because it will only make it worse. โ˜บโ˜บโ˜บ

    Peace, luv n light

    Jan x

  • Hello Jan, thankyou for the welcome :)

    It seems like a very friendly site I have to say, some I've tried before have been rather catty which put me off for a bit but I'm glad I found this one :).

    I find it tricky separating out my symptoms I must admit, especially when it comes to pain and energy levels. I never know how much of my stomach pain is pure Crohns pain and how much of it is the fibro making it more intense if that makes any sense to you?

    The past few days have been spent largely in bed or in the bath, and when I was first diagnosed I always felt like I was being lazy, especially with people always saying I should be full of energy because I'm so young. I first started having Crohns symptoms when I was 15 and was still managing to go to school etc and even did college, but things went down hill fast when I went to uni (to do nursing ironically) and since then I've not been able to work ( I lasted 2 months when I did try a job). For a while I felt awful about it because I felt like a let down and a scrounger but now I understand that I am doing what is best for my body. I'm not well enough to be working and my doctors have made that clear, and I accept that now, and i accept that when I spend a day in bed I'm not being lazy, I'm recovering, which I think is a big step. I have learnt not to put so much pressure on myself, and that I will achieve what I set out to, but when I am ready and not before.

    Nicola x

  • Wish I could do the same and allow myself to rest but it's difficult living with ppl who don't understand and expect you to do house chorse and exactly what you said. I've been called lazy for a while now not knowing why I was lazy. It's so hard mentally to deal with it. I don't know because of this I ended up I'm hospital and splured speech and my vision was affected. Since then I couldn't stand noise or light very bad headaches feeling vulnerable at the same time had to deal with people's remarks. Affected my psychological.

  • Hi there! And welcome.

    What a great introduction post, most informative. Sorry to hear that your Chrones has been so bad recently, my hubby has it so I understand the problems. I take amitriptylene for my Fibro, 100mg at night. It takes a while to adjust to it. I try to take it at 8pm every day, keeping things consistent. If I forget for a couple of hours I fall asleep as soon as I get up and sit down with my coffee!

    I have a plethora of other 'ailments' too as do most of us. Look forward to seeing you around on the forum ๐Ÿธ

  • Thankyou for the welcome :) i have been on Amitriptyline since diagnosis, I have wondered recently about upping my dose of either that or gabapentin as I seem to be having flares more frequently. Its good to know there is room for me to increase it if i need to. I have all my meds in organisers and a chart that reminds me what time to take each thing, there have been one or two missed doses but generally it seems to work. I used to set reminders on my phone but I found I'd just turn the alarm off and ignore it if I was busy.

    It seems conditions like fibro never come alone, I don't know why they insist on bringing all their friends to stay too!

  • Lol! Yes, I hadn't thought of it that way, but yes, Fibro brings his buddys along lol. I like that ๐Ÿ˜€๐Ÿ˜€๐Ÿธ

  • Hi Nicola nice to meet you I'm a mum to a 15 year old girl who also suffers with fibro me ibs acid reflux and service anxiety she's really struggling at the moment. You have decently come to the right place

  • Hello, thankyou, may I ask what your daughter takes for her reflux? i used to be on omeprazole but my IBD nurse changed me to Lansoprazole and it's really made a massive difference. I know I'm older than her, but I was diagnosed with Coeliac at 14 and started getting Crohns symptoms at 15, so if she wants to talk to someone who's been in a similar situation at that age you are very welcome to put her in touch with me.

  • Thank you I will let her know she's on omaprazole and ranitidine she didn't find lamaprazole any good

  • Hello and welcome to our lovely site.We are one big happy family!! You are young to have these issues but you can get them under control .Hope to see you around the site.Peck๐Ÿค

  • Thankyou for the welcome, I love your username, its so cute! :)

  • Thanks, My husband calls me that... along with all our friends now lol Peck.๐Ÿค

  • Good Afternoon and welcome to the gang.

  • Hi Nicola,I am 50 this year I was only diagnosed with fms in Feb, I believe I've had it since having kids 25+ years,were are you from ?

  • I'm from South Wales, near caerphilly

  • Oh bit far from myself, I am in Scotland

  • Hi

    I understand you perfectly because I am yung marred and have a 7 year boy. Is hard to not be able to be a good perfect mum,wife with Fibromyalgia and IBS. I am taking Pregabalin (Lyca) 150mg and Amitriptyline 20-40mg/day.

    I am doing phisioterapy and I am an Event Organizer for Fibromyalgia group. Is good to have a groop in your area were to go. For socializing, meet people who understands you with out no explenation. Unather important thing is listening you body. It will tell you what to do. Take care and talk to you soon.โ˜บ

  • Thankyou for your response, unfortunately there aren't any groups close enough to where I live for me to be able to attend so its just online groups I have access to, but even talking online and sharing experience that way is helpful to me

  • That's fine is better than nothing. As you already know we are on this site to help each other as much as we can. If you have ani questions I am more than happy to help you.๐Ÿ˜Š Have non pain evening as much as posible.

  • Thank you for the information,I didn't know so far is ok. ๐Ÿ˜Š

  • In Southampton Uk.

  • Hi

    I'm very sorry to hear of you're illness and bad reaction?

    I would take your Drs advice, my aunt has Crohns dis and had some bad reactions to some of the meds, hair falling out, mobility probs etc. Like you she had to keep going back and having tests and different meds, she now has her hair back, and is feeling better.

    Wishing you all the very best. ๐Ÿ˜Š

  • The reaction I had was an allergic one, not a side effect, they say I would have had difficulty breathing very quickly if the nurse doing the infusion hadn't of responded when she did. I do listen to my doctors and take on board their advice but I also question things if im not comfortable with what's been said as Ive had doctors make mistakes before.

  • Ohh that's not good, but good that the nurse acted in time for you.

    I agree that you can question them and they are not always right.

    What I was thinking though is maybe do as she suggests and see how you get on. Fibro treatment isn't the same or has the same effect on everyone, I'm allergic to morphine, codine and all the meds that have been tried on me so far. I am having no pain treatment, other than ibuprofen and herbal remedies etc.

    Good luck in your search for athe right meds.

  • Oh I have been doing what was suggested, Ive always taken my medications etc as directed unless Ive had good reason not to do so. The problem I have with taking the slow release morphine in the day is i am here on my own and it makes me very lightheaded etc, so not good if I need to go out because im surrounded by steep steps and a very busy road and also not good in the bath or trying to cook for myself, so im trying to get used to it at night first. I have been taking it every night though and using the oramorph in between in an attempt to get my body used to it. I have found its been disrupting my sleep as well, and if that continues it may be a case of having to just use the oramorph but the doctor wasnt intending me to do it long term anyway, its only until I get onto a new Crohns treatment and get that settled so we can see exactly what problems the fibro is directly causing and then we will discuss either upping the gabapentin or adding in something else.

    Thankyou for your response.

    Nicola x

  • Sounds like you've got it figured out. I tried my meds at night too, it's a good idea.๐Ÿ‘๐Ÿ˜Š

  • Hi Nicola and welcome to our friendly site I hope you enjoy it on here, it doesn't seem to matter what age we all get on as we are all going through the same thing more or less so can understand, what you are going through I'm from South Wales too, near Port Talbot.

  • Thankyou, im liking it already. My boyfriend is from Swansea :)

  • Got family in Swansea, know it well ๐Ÿ˜ƒ

  • Hello and welcome I was diagnosed at 19 but like u from age 13 was told growing pains etc. We r all here too help. Great support group

  • Hi Valleysangel92

    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 can see that you have been given some absolutely wonderful replies and advice so I will simply and sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you

    Ken

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