Anyone else suffering from Fibromyalgia ? Doctor thinks I have it and prescribed some Amitriptyline. Would like to hear anyones experience

[ianwoowoo]

After been GF for 2 years and 2 previous years feeling tired and run down all the time I returned to the Doc's today for another moan. Anyway this time he thinks I may have a mild case of Fibromyalgia. Aparantly it has a wide range of symptoms but is usually related to other illnesses such as Coeliac disease. If anyone has any experience of this illness and Amitriptyline I'd be keen to hear your stories.

[urbangirl]

I had fibromyalgia for several years before being diagnosed as gluten intolerant. Within a few days of being gluten free my symptoms disappeared and were completely gone within a month. I hadn't realized how little energy I had and how difficult it was to get anything together, my whole body ached and I was so lethargic. This is probably not helpful to you as I was diagnosed with fibromyalgia before being diagnosed with gluten intolerance and being GF has got rid of the problem. If you are eating haribos they have glucose syrup in them and as I said earlier I react to this. Maybe check this out?

[ianwoowoo in reply to urbangirl]

Thanks for your reply, the doctor said that a lot of people are diagnosed with FM first and this prompts them to go looking for other causes. I read on the Gluten Free Travellers bog that she was still feeling rubbish so cut out anything out of packets and tins and stuck to only whole foods she knew were deffo GF, since then she has felt loads better. I have tried to do the same in the last week or two but as yet still no improvement.

[urbangirl in reply to ianwoowoo]

Fibromyalgia does make you feel rough so I sympathize and hope you get better soon. I fit the profile your GP presents. It was this time last year that the Fibromyalgia was bad and I began to have permanent gluten intolerance symptoms. That was when I was really worried that I had something seriously wrong with me. This was a learning process as I didn't realize just how many products contained gluten. Once I cut out the gluten I then discovered other things that made me ill like the haribos! But as most stuff that did this was not in my regular diet and I only occasionally ate something dodgy I managed to keep well and felt so good without the fibromyalgia and gluten symptoms. The other day I ate some chick peas that were not organic and I was really ill. I read that they could have been processed in a facility that also processes wheat products although I don't think it said that on the can. Maybe it might take longer for you to get better as we are all different. Do think about glucose syrup in products as that really affects me. Good luck!

[ianwoowoo in reply to urbangirl]

Great advice. I never had classic Coeliac symptoms such as stomach pains and toilet trouble so it is always difficult to know if I am being glutened. I am religious in checking and always avoid unless I am 100% sure but as you say we are all different and maybe things like glucose syrup and the like could be having some effect. I wonder if dairy could do the same ? I am eating lots of yoghurts and drinking lots of milk to try mend my bones, again without any stomach issues, but maybe that's affecting me too ?

Maybe a fruit and veg diet for a month would help.

[urbangirl in reply to ianwoowoo]

I do eat some dairy but can't eat hard cheese as it contains potassium nitrate nor bacon for the same reason. I can't eat eggs either. One of the things that really helped me was FODMAPs because I was able to identify the culprits that made me ill. It is a hassle and it was good to have supervision eg a dietician for advice and support. I have not been diagnosed as coeliac only gluten intolerant but I am so surprised at what sensitivities I have. Now I eat fresh fruit, veg, meat and fish. I thought I ate a good diet before diagnosis - which I did to a certain extent but as I said it was the little things that slipped in such as stock cubes, stuff in drinks and other confectionery. I really hope you can solve the fibromyalgia with diet. I don't know if this is any use but I have a regular massage. I do a lot of swimming and other exercise and massage has helped. In fact the sports therapist who does my massages noticed how ultra sensitive I had become with fibromyalgia and noticed the difference since it has gone. Keep us posted.

[sallydogsmum]

Hi, this is a difficult one! I have autoimmune rheumatoid arthritis, osteoarthritis, Raynauds, Carpal tunnel syndrome (and others) and to cap it all coeliac!! I have been on so many different drugs it's unreal. A few years ago I was really struggling with what can only be described as severe muscle tiredness akin to having to walk through porridge. I was diagnosed with FM and prescribed amitriptyline. I really didn't want to take it, so I researched Vitamin D3 and took it! Within a few weeks all those strange weaknesses dissipated. I suggest you ask your GP if you can try Vitamin D3 at a good therapeutic dose (not a multi-vit) for a few months. It is incredible for muscle weakness and is easier to tolerate then amitriptyline. As you know, FM is often diagnosed with coeliac, so make sure you stay on top of your diet, perhaps review to check you are not more sensitive then you think you are (I can't tolerate anymore then 3ppm) and know if I step over this limit, my muscles (and joints) soon let me know!! Hope this helps (and hasn't worried you!!).

[ianwoowoo in reply to sallydogsmum]

I already take Vit D3 - I take 5000IU a day. I bought them online, they are Healthy Origins brand ? What type and how much do you take ?

[sallydogsmum in reply to ianwoowoo]

What shame......thought I'd provide you with a miracle cure :). My D3 brand is sunvit and I don't need to take as much as you now, I mostly top up in the winter with it as needed. Hope you start to see some improvement with the FM, it's difficult to cope with a feeling of constant lethargy. Another set of research recommends magnesium supplements too to help muscle strength and yet another suggests taking probiotics with D3 to help absorption. Perhaps, as you said in another link, you need to cut out dairy for a while? I only eat cheese as milk and yoghurts make me feel ill - I react to the proteins - and only eat cheese infrequently. As I'm new to this site, it's really eye opening to be in contact with other people who have similar problems to me. I am breathing a sigh of relief that I am not alone. I really hope you feel better soon, good luck!

[ianwoowoo in reply to sallydogsmum]

Maybe I'll try the SunVit ones again, I did use those at first and they were recommended by my doc. My Vit D is back up to normal now so I guess it's not that causing my lethargy. Good to hear your experiences too

[Hidden]

i have had coeliac disease for 17 years and follow a gluten free diet. I also am on Thyroxin and when started to feel tired always thought my medication had gone under and always went for blood test. As i have arthriteous too put up with the aches and pains.But twelve months ago i was sent fo see specialist and he could not rule out fibromyaglia. He said i had a lot of trigger points and i too was put on amytriptaline medication, I did not realise this was yet another link to coeliac.

[ianwoowoo in reply to Hidden]

Thanks for your reply - did the medication help ?

[Hidden in reply to ianwoowoo]

it did but found i was having problems taking it. I now actually take gabapentin300mg four times a day. And am finding this really helpfull. I also have a titanium knee joint and unfortunatley for me have had on going problems. The best all round medication for me is Gabapentin and i would recomend this to anyone.

[ianwoowoo in reply to Hidden]

I'm only in day 3 and as yet no change for the better or worse but I read that it can take 4 weeks, so patience required.

[upnabout]

I was prescribed Amitriptyline for Peripheral Neuropathy a few years ago. It left me unable to function - I was like a zombie. I don't even recall if it helped the symptoms, but I eventually refused to take it. Of the many medications I have had to take, it's one that still fills me with a memory of horror!

[ianwoowoo in reply to upnabout]

Oh not good to hear ! I am only taking 25mg before bed, apparently it helps my body get the right kind of sleep to repair itself. We shall see.

[upnabout in reply to ianwoowoo]

I can no longer remember the dosage, just that it really didn't agree with me. I sincerely hope it helps you. Everyone reacts differently after all! Sometimes though it is helpful to know the negative effects of medications or at least that it is not just you. Medical professionals genuinely want to help and they prescribe things, which for the most part is all they can do. All medications have side effects and quite often they will prescribe something else to counter the side effects which in turn has side effects, ad infinitum. They mean well, but sometimes you really do have to stand up and say enough is enough!

[ianwoowoo in reply to upnabout]

Thanks, I will give it a chance but I would prefer to handle it with diet if that is possible. It does feel to me like something's poisoning me but it's a matter of finding out what it is.

[jillylin]

Hi,

I had been given my Fibro diagnosis then almost a year later my then GP suggested cutting down on gluten would help tummy problems, which it has done. I have amitriptylene for nerve pain.

Hugs

Jillyxx

[ianwoowoo in reply to jillylin]

Hi Jilly, it sounds like the FM diagnosis often comes before CD and other hidden diseases. For me it's the other way round. I went to the doc's on and off for 2 years before I pointed out an Asda magazine article about CD and the doctor said it was worth testing me for.... I was hopeful this was the cause of my lethargy but I really don't feel any better.

[jillylin in reply to ianwoowoo]

Hi,

I did find it took more than a few months to reap the benefits of being Gluten free so you may find the same.

Hugs

Jillyxx

[Dona]

hi I have type 1 refractory coeliac disease and take amitriptylene two tabs to take at night its not used for depression but research states its a very good pain killer for which i take it for and it does work

[ianwoowoo in reply to Dona]

Thanks Dona, I don't have any pain to cope with thankfully, just tiredness.

[myrab]

I had Polymyositis to start with after several years has left me with Fibromyalgia, also Diabetes ,Psoriatic Arthritis,

Skin Psoriasis, and a few more to boot. I had Amitriptyline but was doubled with Gabapentin., for pain relief , now on pregabalin and Ibuprofen. But all down to an Immune System that was damaged by Polymyositis, now find myself, with yet unconfirmed Coeliac Disease. Seems a hefty link there.

[ianwoowoo in reply to myrab]

Blimey you are dealing with a lot, makes me feel like I'm moaning about nothing !

Thanks for your feedback, the list of linked disorders is never ending.

[Hidden]

Hi Ian, well I am sorry for you and even tho' I don't have Fibromyalgia, I read the symptoms and many members have issues with some of the symptoms like IBS, aching, restless legs and regulating body temperature, which have come up before.

The other thing that really interests me are the comments on controlling it with diet and the comments about processed foods and glucose syrup, the reason that this interests me is because you and others may be having a reaction to additives made from wheat so it is wheat and not just the gluten that affects you. Those who have an intolerance to wheat don't just avoid gluten they avoid fizzy drinks made with artificial sugars, caramel colour E150 and even citric acid can be a wheat derivative. So here's a list of E numbers and bear in mind that if the source is sucrose then it could be a wheat derivative. dflock.co.uk/colitis/foods/...

Lastly give the Amitriptyline a chance to work and I hope that you start to feel better soon as you've said before about still not feeling well. And good luck to you.

Jerry

[ianwoowoo in reply to Hidden]

Thanks Jerry, I hope so too. I don't drink fizzy drinks any more and only occasionally eat sweets but I certainly haven't tried to exclude Glucose Syrup completely. As Urbangirl suggests maybe FODMAP diet may be a good starting point to see if that helps and then wean myself back onto things slowly. Thanks for the info. on E numbers I'll have a good read of that.

[FionaGFG Administrator]

Ian what are your exact symptoms? I ask as aches & lethargy alone aren't enough for a diagnosis of Fibro. I myself had the same symptoms as you and I discovered 6 mths after diagnosis that I was severely VitD deficient (I was 15 when it should in the 100s and ideally 75). After 3 years of vitaminD shots I began to feel better but still had lots of tiredness and aches and pains. Doctor suggested I had chronic fatigue (which I knew was tosh as I was a very energetic person but kept feeling like I'd been trampled on all night long and ached most days). Long story short ended up in A&E as an emergency after many trips to GP waiting for physio for back & leg aches and pains and was diagnosed with a central prolapse (slipped disc L4/L5). Complete agony and 4 days in hospital. Months on crutches & 3 months until I could sit down again. Still having physio a year on. The moral here is do not give up chasing your Dr. Do research on the net & keep asking questions here. I seemed to have classic slipped disc symptoms and am still v annoyed this was missed. But sometimes Doctors are easily focused on Coeliac instead of what else maybe going on. So keep an open mind. Get your vits and bloods tested at the docs and take things from there i.e. when was the last time your thyroid, iron, B12, ferritin, calcium, VitD and even magnesium levels were checked by the doctor? And Amitriptyline is commonly used for IBS, peripheral neuropathy etc. So if you have such symptoms your Dr needs to work out why rather than dish out such drugs esp as they space most people out even in small doses!

[urbangirl in reply to FionaGFG]

Interesting point Fiona. When I told someone I had fibromyalgia they suggested that this is what doctors diagnose when they didn't know what was wrong with you. But as far as I know there are some tests that doctors do in the surgery when they diagnose fibromyalgia. I certainly passed those tests with flying colours but in retrospect I am disappointed that the GP made such an easy diagnosis and did not take more time to investigate more symptoms with me. Besides - I have said this on a previous post, I had been having so many xrays to identify other problems such as arthritis which I don't have.

[ianwoowoo in reply to FionaGFG]

Hi Fiona,

My symptoms are: General Lethargy, aching muscles (without exercising), feeling thick headed and tired eyed even after a 7-8 hours sleep, I also seem to be more forgetful, can't concentrate like I used to, also have mood swings for no apparent reason. Basically - no ooompf !

Not debilitating but it really does stop me living life to the full.

My Vitamin D levels were low at first but I was taking SunVit D3 supplements that boosted it and doc says it is now fine. One thing he did say on my last visit was that they hadn't tested my folate levels. He said they had requested it on previous test but the lab didn't do it. Not sure what Folate levels effect but I'll have a google this weekend. I'm going to have a blood test for that next week. I have had blood tests done in the last year and doc says all were fine.

Then I have to go back after 6 weeks on the Amitriptyline to see if its helping, we shall see.

Thanks for your comments.

[FionaGFG Administrator in reply to ianwoowoo]

Ian we have learnt that 'Fine' by Drs covers a very wide range of things. Always always ask what 'Fine' means. To some being at the low end of a very wide range i.e. the low end of Vitamin D is 'Fine' likewise being at the high end of 'Fine' ref Thyroid tests and the low end of others as 'Fine' can mean a diagnosis of Hashimotos thyroid is missed. Ask for tests anti-peridoxidase (ignore late night spelling) - as this is better than the normal TFT (thyroid function test). Do ask about ferritin, iron, folate, magnesium as well.

[myrab]

Hope you get some answers from your next visit and blood test's,

My FM, was an after effect but confirmation done with 2 Muscle biopsies, and Bloods test of CK levels, which should be around 200, mine came back 24.000, a bit high:)). But it was only then the other Immune diseases kicked in, the Thyroid is underactive the arthritis, Angina, etc, etc; Before 2004 We ran our own Hotel business 24/7 lead an active lifestyle, I am a chef so was aware of my dietary needs,(unlike some chefs :))). I even catered for Coeliac's back in the early eighties.

There are so many variables , just keep at the health services till you get a clear diagnosis so you can get the right treatment for you. I was also told FM just meant sore muscles, but it is now a recognised disorder and needs to be taken seriously, especially with your other problems. Myra

[FionaGFG Administrator in reply to myrab]

Spot on Myra!

[Fibroboy]

Like you i have both fibro and coeliac : - (( tried many medications including Amitriptyline but was unable to tolerate them as a sensitivity to meds is also a symptom of fibro but what works for one may not work for another and it is really just a case of finding what works for you. Also prescribed vit d supplements which are 10,000IU and dont really notice and difference from taking them. What a happy little message that was! lol Oh thee joys of ill health..........

[Jacks]

Is that for pain relief? Tricyllics were THE anti-depressant pre Prosac, but you can't keep a bad drug down so the drug companies are encouraging it's prescription for sleeping problems, pain & anything. It horrifies me.

[FionaGFG Administrator in reply to Jacks]

Exactly Jacks v worrying. It's now used for IBS, Migraines and any peripheral neuropathy symptoms too. Often a plastic on a problem. We'd prefer Drs getting to the root of the cause.