Morning friends

I found out yesterday I now also have Fibromyalgia ,I think my body is trying to work its way through a medical book, anyone who has info on this would be appreciated, especially if you also have coeliac disease , trust me I was very healthy while I lived in west london , then I moved to Brighton 4 years ago and my body has been attacked by lots of medical things which i dont like I want to be as healthy as I was before I moved, Have a nice day friends xx

14 Replies

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  • Hi Jill

    Sorry to hear about the FM. There is a HU site for it.

    healthunlocked.com/fibroaction

    Perhaps have a look at the Autoimmune Protocol from the Paleomom, to see if there is any useful advice.

    thepaleomom.com

    Good luck with dealing with this problem, hopefully there are some plus sides to living in Brighton.

  • Hi Jill,

    Sorry to hear your news. I was diagnosed with Coeliac disease 3 years ago after a long run of feeling tired all the time. This went on for 2 years and I went back and forth to the doctors every couple of months until they finally found Coeliac.

    I was expecting to feel better after maybe a few months but I never seemed to do. I started going back to the doctors again determined to find out what the problem is. I made sure I always saw the same doctor each time to make sure there was some continuity. After numerous tests he decided that maybe it was Fibromyalgia. He prescribed Amitriptylene 10mg to help me get better sleep so my body has chance to repair itself and therefore should feel better. When I started looking into FM I found that its part of a group of non-specific conditions including ME and Chronic Fatigue Syndrome all of which has common symptoms.

    My symptoms are at the very mild end of the spectrum and are more ME type than FM which seems to include more joint and muscle pain related to it. So much so that I am still not convinced that this is the actual problem. I still have bouts of very low energy levels - mood swings/depression - brain fog and I think there is still an underlying problem. As an engineer and an analytical person I find it hard to accept a diagnosis that is so non-specific and arrived at by discounting other conditions.

    As Penel mentioned - the fibroaction group on Health Unlocked is a very supportive group which I joined for a while. After a while though I found that the people on there were struggling with far worse symptoms than myself and I felt a bit of a fraud so ducked out.

    How were you diagnosed ? Do you have the pain symptoms more common with FM?

    Ian

  • Hi Ian, yes sadly I do the pain and its very painfull at times , I struggle with the tierdness and the pain, im trying to find out as much as I can to help myself with this new illness, like getting fit, and letting my body sleep when it wants to rather than fight it because I feel bad sleeping in the day time

  • Hello Jill

    You must be feeling fed up. I had fibromyalgia before I got diagnosed but for me which is different to you, once I stopped eating gluten the symptoms disappeared. It took me quite while to understand there was something wrong but I just ached and ached and couldn't get anything together at all, although I kept up my daily swimming, which I think helped. But I wondered if there was anything in your diet that could be affecting the FM? I cannot tolerate glucose syrup as it probably contains stuff like wheat. As you probably know it is in lots of products that are considered gluten free like confectionery. It's just a thought and I hope you get some advice on how to manage the FM as it is rough.

  • Hi urbangirl, I was interested to see your reply. When you say you can't tolerate Glucose Syrup - do you mean from a digestive point of view or other symptoms ? I suspect there is an underlying cause that give me my issues and I wonder if it could be something like this?

    Ian

  • Ian the reaction to glucose syrup is digestive. Of course I try not to eat it. Before diagnosis I think it was a combination of everything that made me feel rotten because it is difficult to identify any one thing that is the culprit. But I do know that nowadays when I have eaten the stuff I am not well but it tends to get out of my system very quickly and I don't notice any other effects. Whilst I don't have FM any more I do have tendonitis in my hips and have had it in my elbow and shoulders. I go to pilates and have regular massages to help with this. I recently fractured my wrist and dislocated my knuckles and my hand seems to be taking a long time to heal but that could be an age thing! A couple of years ago I fractured some ribs and that took ages to heal.

  • Thanks for your reply. I am always on the look out for potential causes of my continued lethargy/brain fog. I am thinking about going back to basics with a paleo type diet but it does seem to be very restrictive. Thanks again.

  • You are right some of these diets are restrictive but I think they do the job! I eat low carb and cut out as much sugar as I can. But the other day I had a relapse and really fancied some Dairy Milk chocolate as I thought it was okay in the form of Twirls, Wispas and chocolate. I had a bit of chocolate every night for 3 days and then I started to get nausea. On day 4 I got the digestive reaction and spent 2 further days with nausea. That has never happened to me before. As I have done an elimination diet and stick to it I know what affects. I won't be eating this chocolate again!

    Another thing ... I was in London recently and needed to get some lunch quickly - went to EAT (may have been Pret a Manger can't remember) and enquired whether their squash and maple soup was GF - yes it was. I had some and didn't feel so good in the afternoon because of course the maple was maple syrup which probably contained glucose syrup. Discovered this when I got home.

    So sticking to a restrictive diet makes me feel good and I try to be creative. I am a very fussy eater so many of the recipes don't turn me on. Sometimes I get bored with food and I think that's why I wanted to have some milk chocolate - I am okay with dark chocolate. I keep making resolutions to try a new recipe every week but fail! Do look up glucose syrup and see what you think. Good luck!

  • Great advice - thanks!

  • I get similar symptoms with dairy. Ur chocolate. Cheese eggs etc etc. but the pain seems to effect my lower right side where as wheat and gluten seem to effect my upper right side I also seem to get lots of joint pain when I have eaten too much dairy. I'm ok if I eat it every other day but not too much at the min. Also tiredness is a big problem but my bloods are still being investigated (iron levels). B12 sorted with injections but folate and ferritin still keep dropping fast when not on meds for them. Hope this info helps too

  • Ian I have just gone onto pinterest and looked at the paleo diet recipes. There are absolutely loads! I am sure there will be lots of room for creativity. I feel very encouraged now. Have fun!

  • I use the supplement ANIRACETAM to combat the brain fog which really worsens in the winter. It keeps me alert and focussed. Also my Fibro was a misdiagnosis of an edocrinological problem. My local nhs also used this diagnosis to deny me further investigations into my pain and fatigue. I was told that I WOULD be tired as I have Fibro so there was little the nhs could do. I am in the middle of a CAB supported complaint due to this

  • These posts are very interesting to me as my 10 year old son was diagnosed at 8 with Coeliac Disease. After 5 weeks on a gluten free diet he was 100% better and did brilliantly for 11 months then out of the blue complained of nausea over and over. He was pale with dark circles under his eyes. He started lying on the couch and lost all motivation to go out because he was so tired. I was worried sick. I kept taking him to our gp but he just said it's a post bug thing he will get better but he didn't. He had weeks off school and I nearly lost my mind. Eventually we got an appointment to see his paediatric gastroenterologist. She thinks he has post viral fatigue syndrome. That was last January and he's still poorly. So that ties in with what you found out Ianwoowoo! These immune conditions are often related. ( I have Rheumatoid Arthritis also auto immune ) . No quick fix I'm affraid. I'm so hoping that my son will get better though, it's hard enough living a life without gluten. We have stopped him having anything with codex wheat starch in it and anything with wheat derivatives like maltodextrin, dextrose and glucose syrup. He misses his jelly sweets like wine gums but enjoys Aero and Love Hearts. We have had to change his bread and soya milk and he can't have shop bought ice lollies or sorbet any more. This has made me look at Paleo diet seriously as we have become obsessed with food labels and it makes us realise there is a lot of crap in our food. So we eat meat, fish, poultry, potatoes, rice and gluten free pasta, fruit veg nuts and seeds. Next we will try to ditch the dairy and potatoes. I would follow others suggestions Ian and look at Dr Sarah Ballantynes Paleo approach. She has an auto immune condition herself.

  • Ian, I have autoimmune liver issues and underactive thyroid. I now seem to be struggling with bread which seems to upset my tummy and I get tired, brain fog and itchy. I am looking into paleo diet too. Just wanted to check with you Ian if you have ever had your thyroid tested. There is a list going around facebook just now with 300 symptoms! My thyroid blood tests went unnoticed by my GP and it is best to have a TSH around 1 or under and a Free T4 in upper quartile of reference range given on your test results. It would be good to get a Free T3 and antibodies done too but some labs don't bother. Please also note that in UK people were treated if TSH over 3 but that has changed and GPs have been told not to treat people until TSH 10 or over. Alas some people can't function with TSH over 4 or 5. Some GPs like mine will treat at TSH over 5 if they have a number of symptoms consistent with thyroid problems. Hope this helps. Sx

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