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Crohns and fibromyalgia

Hi everyone. Just been diagnosed with fibromyalgia and wondered who else might be coping with both conditions and how you manage. Would greatly appreciate your input. Many thanks in advance :).
 

nogutsnoglory

Moderator
Hi liz I also have fibro and so does valleysangel92. It definitely adds on a layer of paranoia because it's hard to distinguish pains that are signs of internal issues from just fibro pain which hurts but isn't dangerous. I'm still learning how to cope. Thought I was having a heart attack yesterday, fibro pains mess with you big time.
 
Yeah I know what you mean, there isn't a day that goes by when I'm not in pain and I'm really fed up with it all. Sadly I can't tolerate the meds used for fibro so I feel quite at s loss atm.
 

valleysangel92

Moderator
Staff member
Hello lizbeth

As ngng says I also have fibromyalgia (thanks for the tag no guts) . I had my first symptoms aged 12 but have only recently been diagnosed. Like you I am still learning to manage my condition. I can tolerate amitryptiline, but have recently been trying another med that's a type of antidepressant used for fibromyalgia but it gave me terrible mood swings so I've paused it for now and will try again in a week maybe.

I agree that it can be hard to manage the combination of crohns and fibromyalgia, I often find it hard trying to work out how much of my pain is what I would feel of I just had crohns and how much is the added sensitivity those of us with fibro have.

I know you say you can't tolerate the fibromyalgia meds, but there are a wide range of them, what have you tried? You can also enquire about other forms of treatment such as physiotherapy which can be beneficial to some and I personally use a tens machine and heat when my joints are causing me pain.
 
Thank you for your reply Valleysangel, I remember reading that you had fibro and I thought that it was a relatively new diagnosis too, it made me sad that you are so young and have to deal with it all. Who helps you manage your fibro,, is it your gp or a consultant? I've been left to deal with it on my own. I saw a rheumy on Tue for the first time who gave me my diagnosis, I was then given a booklet and name of a local charity and that's it. My gp is great but admitted that he doesn't know much about it so I feel very much alive with it.

I'm currently on gabapentin, have been for approx 4 years, recently tried lyrica instead but couldn't tolerate it and was on amitriptyline but couldn't tolerate that either,, my consultant was very wary of trying any anti-depressants bc I'm not depressed and I wasn't very happy about using them either bc I seem to get the nastier side effects of meds and didn't want to have to deal with mental issues as well. Nothing else was suggested except go away and educate myself about fibro.

We have a local support group so I joined it and they are being very helpful and I've been doing some reading. I do have a tens machine so I could look into trying that more and I was recommended to a yoga group where everyone has health issues so I'm going to try that on Thu. I just feel that the drs have let me down, I thought that rheumy would help me but that's not happening, the only help I've had is from the specialist physio who referred me to them, she's been giving me acupuncture and that has helped but she can only provide so many sessions but I can't afford to pay for it. I'm finding it really difficult to accept this new diagnosis and the impact on life it's having.

Sorry for the long moan, I'm floundering and don't know what to do with myself.
 

valleysangel92

Moderator
Staff member
I was diagnosed by a rheumy and then sent back to my GP and have felt much the same as you, that I have been left to deal with things by myself. I saw my GP the other week and told them I'd had an increase in symptoms and they suggested the new med, but I'm not keen on it. I don't have depression but when taking those meds I constantly felt like I wanted to cry with no valid reason. The only other medication I've been given is amitriptyline and that's it.

I feel like fibro care here is very patchy and its very much up to the patient to keep on at doctors and make something happened. My GP admitted to me that because there are no tests they can do to see how bad the fibro is they have to rely heavily on the patient coming forward when things get bad. The issue with that is that while some doctors will take a patients word and listen, others will simply tell you to deal with it.

I can totally understand how you are feeling, there are still times where the weight of the different diagnosis's I have hits me for six and I think that's just natural. Feel free to rants to us here as much as you need
 
Fibro care seems to be the same here,, or where I live, 60 miles away in Belfast patients are looked after by rheumy and I don't see why there should be a difference, but hey hoe just going to have to accept it and move on. I'm very lucky that my gp does listen to me and has been very good so I know I can go to him when needed.

I didn't want to take any anti-depressants bc of the reasons that you have experienced, I'm scared that they would cause any depressive state to happen, I think I have enough to cope with without adding depression too. The gabapentin for help with the pain, maybe it's something you could try?
 

valleysangel92

Moderator
Staff member
By 'here ' I meant the UK, I've heard some people here get great care and then others like us feel quite unsupported and alone with it. Unfortunately it seems to very much depend on a person's individual doctors and what effort they make, there doesn't seem to be a structure for them to follow like there is with other long term conditions.

I will have to look into that, it's not something I know a great deal about myself. It very much depends what doctor I manage to get in with what I'll get.
 
I'm in northern Ireland and there seems to be a great difference in the level of care atm, our assembly is having a financial crisis and they have put a halt on all surgeries that they had farmed out to the private sector,,I was due to have shoulder surgery at the end of Dec but have been told it will now not take place until after Apr, so it doesn't really surprised me that there aren't enough resources to provide a consistent service :(.

Gabapentin is in the same family of drugs as lyrica which are anti-seizure meds but have been found effective in treating nerve pain, my consultant said that they do appear to be beneficial in treating pain associated with fibro. I've been on it for about 4 years, it was suggested that I tried to come off it but when I did my symptoms got a whole lot worse so I went back to my usual dose, this was one of the reasons that my Dr diagnosed fibro, the fact that it helped when other things didn't.
 
This is my first time on this site. Having a bad night. I don't normally let it get me down but letting it get the best of me right now. I'm so surprised to read that there are others out there with the combination of Crohns and fibromyalgia. I have never been told that there is a connection. I also have issues with my spine. Ive been through the medication routes, , natural meds, glutton free diet, surgeries. My biggest struggle is letting myself get to stressed out and overdoing it. Besides the stress and eating the wrong foods, does anyone out there know how else its triggered? Had it most of my life and still in the dark.
 

nogutsnoglory

Moderator
This is my first time on this site. Having a bad night. I don't normally let it get me down but letting it get the best of me right now. I'm so surprised to read that there are others out there with the combination of Crohns and fibromyalgia. I have never been told that there is a connection. I also have issues with my spine. Ive been through the medication routes, , natural meds, glutton free diet, surgeries. My biggest struggle is letting myself get to stressed out and overdoing it. Besides the stress and eating the wrong foods, does anyone out there know how else its triggered? Had it most of my life and still in the dark.
Welcome and sorry you are struggling. It's definitely stressful but maybe keep a journal of what works and Durant for you with both Crohn's and fibro.

There is no formal link between crohns and Fibromyalgia but it's not uncommon for people with autoimmune conditions to have multiple ailments. Many people here gave co-existing conditions and it makes managing IBD more complicated. We need to have a good medical team, patience and be open minded to trying different runs to see what works.
 
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