Recently Diagnosed Fibromyalgia - Fibromyalgia Acti...

Fibromyalgia Action UK

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Recently Diagnosed Fibromyalgia

Eladee profile image
19 Replies

Hi all first post on this forum.

I was diagnosed with fibromyalgia last week but have had symptoms (fatigue, low mood, whole body aches) for ages and took early retirement in December.

I’ve got osteopenia and been prescribed Gabapentin and co-codamol for compression fractures and disc compression but I’ve not been taking as many since retiring

I take thyroxine as had thyroidectomy for graves disease and recent private blood test showed TSH 2.1(range 0.27-4.20)

T4 17.1(range12-22.0) T3 3.94(range 3.1-6.8)

I saw gp who sent me for routine panels and they were all normal according to my gp but I thought I needed an increase in thyroxine, she said no to any increase and said all symptoms pointing to fibromyalgia (my back pain is a constant pain that I’ve been referred to orthopaedic clinic for)

Gp said read up about fibromyalgia, restart gabapentin, she is referring me for physio and and said to consider duloxetine, I’ve got to go back to see her in 4 weeks. I don’t really want to start on duloxetine even though I feel pretty miserable most of the time 😣

Any tips to help with the constant aching low mood and tiredness will be greatly appreciated.

Sorry for long post!

19 Replies
Blearyeyed profile image

Welcome to the forum. You will now see lots of lists of topics and pinned posts that you can look through on the right hand side of your post which will help as you begin to learn about coping with Fibro.Looking at the information on the charity website is also a really good start.

Obviously, you have a number of health issues as well as your Fibro so it's good to keep in contact with your GP and monitor how each thing is improving with regular blood tests and checks as it is better to treat yourself as a whole body and try and keep the symptoms of each of your health issues well managed. You want to avoid one issue triggering symptoms in another.

It would be a good idea to start trying the advice you have been given by your GP so far ,as they seem to be much more interested and proactive in helping you than is sadly often the case.

Garbepentin is regularly used to help the nerve pain of Fibro ,and either Garb ,or Pregbalin, in combination with low dose Duloxetine is commonly used and often gets better improvement in symptoms than just one drug alone.

Duloxetine may have begun as an antidepressant which often gives it a stigma it doesn't deserve. Over the years , research has proven it works well for nerve pain relief and as a nerve relaxant in all sorts of conditions from Fibro to Diabetic and Thyroid neuropathy and even bladder and bowel urgency issues. It is commonly prescribed and successful as what is called an , " off book " medication.

One thing about beginning new drugs , or restarting old ones , is that it's often better to begin one at a time so you don't get confused about which could be giving you side effects and if each is working for you. Starting at a low dose, then tapering up over a number of days or weeks, to a dose that works for you. This helps you work out if the drug is helping , which dose is enough , and if you are having side effects which can either be managed or not which might mean you change the medication.

I would personally start on your Garbepentin again first. Try a few days at your lowest dose ( this might mean one a day) then go up to the dose recommended so your body can get used to the change with less side effects.

You might also benefit from taking the standard dose of Paracetamol at the recommended intervals per day as well to help any inflammatory pain , or non nerve pain , that won't be helped by the Garbapentin but could be present, especially in your back.

You should keep a pain and symptoms diary so you can see how, and if, your symptoms improve, or which symptoms are more common. It's also worth looking at your diet , water intake and supplements as all of your health issues can cause a reduction in nutrients even if your diet is good and drinking the recommended amount of water each day helps reduce the chance of pain and inflammation caused by internal dehydration, which can be happening even if you don't feel thirsty. Making any changes to your nutrition and including supplements can happen during that first month while you start Garbepentin again.

You could choose to wait to start Duloxetine for a month and explain why you did it to the GP. You may find you don't need it once the Garbapentin has had chance to build up and work on your system again. However, if you are still experiencing pain you can't manage you could try Duloxetine from the lowest dose and give it a chance. You could get some side effects as your body adjusts that can take a few weeks to settle but you will at least know that these side effects are caused by the Duloxetine because you begin each drug separately and your body only has to work on readjusting to one thing at a time . You could arrange another GP appointment 4 weeks after starting that and then make a decision based on how well it is helping you.

You will already know about the need to pace yourself and create a good balance between activity and rest each day because of your Thyroid issues. If you also have Fibro it could be necessary for you to look at your routine again , avoid certain activities ,or adapt them , to reduce triggering pain , and possibly slow things down a little bit more. Just like thyroid issues , Fibro is a life time condition , the medication is there to help you manage the symptoms rather than cure them , you use your meds and self care to be pain and symptoms managed rather than 100% pain and symptoms free.

Getting to physio can be good but ask to see a more senior or Rheumatology Physiotherapist because if your comorbidities and only start with slow , shorter sessions taking note of your back problems . You want exercises that are gentle , within your current comfort zone that you can build up from and it's good to request to try the graduated pain management exercise programme rather than the " one size fits all" basics , which never feel basic to a person with Fibro pain. You may benefit from starting physio after the eight weeks of you getting adjusted to medication but while remaining gently active at home.

Try little gentle strolls and stretches at home , or in the fresh air if the weather allows, a few times a day for only a few minutes each time to reduce the pain and fatigue and boost your mood. Try looking up breathing and mindfulness techniques to try at home too which also really help you control your pain , fatigue and other symptoms as part of your self care . See if there are any way you can improve your bedtime routine or if you would benefit from getting supportive pillows to improve your rest , this can make a huge difference to all chronic conditions.

And post as many times as you need to with as many questions as you have until you feel confident , you'll get great tips and support from the members here , take care , Bee.

Eladee profile image
Eladee in reply to Blearyeyed

Hi Bee

Thank you so much for your detailed reply, the fibromyalgia diagnosis came as a bit of a surprise as I was convinced my thyroid medication needed increasing, my gp is supportive and said if we looked back in my history I’d got the symptoms in 2021 but thought they were due to menopause then after X-ray for back pain I’d had 2 compression fractures in thoracic vertebrae so she started me on hrt and Adcal D3 supplements. I’ve still got the body aches fatigue and low mood all the bloods were normal hence her diagnosis .

I don’t know much about fibromyalgia so I’ve got a lot of information to look at.

I’ve got a diary so will start making notes of symptoms etc and what meds I’ve been taking.

I was working part-time 3days a week but was finding it exhausting and getting stressed because of the brain fog - does it ever improve ? I thought it was work making me feel so bad but I’d obviously got the fibromyalgia underlying as well as the other conditions 😣

I’m going to see how the symptoms are with just gabapentin and paracetamol or co-codamol at the increased doses and hopefully I won’t need to start the duloxetine.

Thank you so much for your advice it’s really helped 😊

Blearyeyed profile image
Blearyeyed in reply to Eladee

The symptoms can improve , just like with thyroid issues when you get your balance right if activity , diet and medications.If work is new it can trigger your Fibro symptoms and brain fog to get worse , so in a way work is responsible.

You may find adapting your work role and the return to medication will make it easier.

The brain fog does get worse with pain and fatigue.

Don't forget Stress isn't just a bad thing or the same as Anxiety . It's any activity, mental or physical , good and fun or bad and sad that means your brain and body are trying to do more than they can cope with at your current level of health. So going back to work may have been a bit too stressful in one jump.

Reducing hours or building in one shift at a time , allowing yourself hourly minutes of rest ( or little strolls and stretches if the job is sitting ) until you find your limit is recommended.

Plus , you also need to consider the impact of jobs you do at home like cooking , cleaning , child care etc . so going back to work often means making sure you get more help with jobs and you take proper rest time when you are at home.

I personally recommend trying paracetamol before codeine based drugs . This isn't just because I'm very allergic to it and do an impression of the girl in the Exorcist within ten minutes if taking it.

Codeine can cause severe rebound pain and headaches when it leaves the body , even after just a couple of doses . This codeine cycle is generally the reason that people find it hard to stop taking it or become reliant on it. The codeine also causes the pain.

It is also harder on the stomach and can cause more acid and less absorption of nutrients . If you do go back to cocodamol , make sure you protect your stomach with a few spoons of natural live yoghurt which you can sweeten with a little honey to reduce stomach sensitivity, which can be more common with Fibro for many .

Eladee profile image
Eladee in reply to Blearyeyed

Hi Bee Thanks for your reply I’ve noticed more recently if I’ve been out e.g shopping or meeting a friend at the pub I feel drained afterwards, I went to a work meal last week and actually felt really hungover the next day and only had 1 glass of wine, it was almost like it was too much for me to cope with as I felt out of sorts all day, is this common or was I just having an off day I don’t know but it spoilt the next day for me!

Also I have the best intentions to do things then don’t feel up to it and do nothing 😣

Sparklingsunshine profile image
Sparklingsunshine in reply to Eladee

Just to say we have an excellent Thyroid board with some extremely knowledeable members on Health Unlocked. It might be worth joining. I also have hypothyroid and your TSH is too high for someone on replacement thyroid hormones.

Yes you could have Fibro, but undermedicated hypothyroid can mimic Fibro symptoms very closely. It would be a shame to start on some very powerful drugs for Fibro if its not Fibro you have.

Eladee profile image
Eladee in reply to Sparklingsunshine

Hi sparkling sunshine

Thanks for your reply, I’m on the thyroid forum and they said the same as you about my TSH being too low and to try and get my thyroxine dose increased but my GP said TSH was perfect! and was adamant it wasn’t my thyroid causing my symptoms and wouldn’t increase my thyroxine incase it caused heart problems so I’m a bit stuck.

Maybe I need to see a dr who would look at my TSH T3 and T4 results but the gp’s at my surgery are all of the opinion if the TSH is in range all is well 😖

I’ve got enough 100mcg Levothyroxine that I could take 100 on one day instead of 75 ( increase by 25mcg weekly)

I think my thyroid is partly if not fully causing my symptoms but gp won’t increase thyroxine 😣

Sparklingsunshine profile image
Sparklingsunshine in reply to Eladee

You could try self sourcing some extra Levo just to see if it makes a difference. As I said the Fibro drugs can help some, not all, but they have a lot of potential side effects and if its thyroid related then it makes sense to rule that out before trying Fibro meds. Ask on the forum as I know some members have bought their own Levo.

Eladee profile image
Eladee in reply to Sparklingsunshine

Thanks I’ve ordered some more through gp as I usually do, (awaiting approval) there should be some 100 mcg which I could use as I only take one per week (75 mon -sat 100 on sun) Slowdragons calculations showed me quite under medicated so I think I should go for the increase before starting other medication aswell.

Acocoa profile image
Acocoa in reply to Blearyeyed


You advice and guidance is on point. Nutrition and vitamins help. Also, triggers of stress and anxiety. I'm so glad to be part of this forum with supportive and lived experience people 💓

Yassytina profile image
YassytinaFMA UK Volunteer

Hard too know what too do medication wise and it can be trial and error for sure, I am on Duloxtene over 5 years now , for me personally it has been brilliant for low mood and it’s still doing it’s job thankfully, glad too see you post , always good too have a chat , get friendly advice x

Eladee profile image
Eladee in reply to Yassytina

it’s a minefield, not what you want when you don’t feel well!

Acocoa profile image


Sorry you are going through a lot of pain. I do have experience with Gabapentine. I am currently taking it for a flared up of my spinal Stenosis pain and nerve issues.

My regular medication for fibromyalgia is Amitriptilin 50mg at night with low dose cocodemol. But as from today after seeing my doctor, she recommended stopping Amitriptilin, can't take together. I am taking Gabapentine 600mg ( 300mg morning and afternoon because I work and I drive during the day. Then 600mg + cocodemol at night).

Gabapentine is helping with the nerve pain and Fibromyalgia. But I add gentle exercise such as pilate and aerobic exercise in morning daily. It does relieved pain in the day to carry on with my work and parenting responsibilities.

I would advise keep taking the Gabapentine and add gentle exercise as when/fit and able you can. There is no one size fit with fibromyalgia and other chronic problems, but you have to try things offered to get the right one for you.

Hope you find some help and relief 😊 Wish you God's divine blessings and healing 🙏🏾 💜

Eladee profile image
Eladee in reply to Acocoa

Thankyou for your insights, it’s helpful to know I’m not on my own, this forum has given me much more information than my gp has !

Milton2328 profile image

I would say don't just take the fibromyalgia diagnosis it's the easy way out for GP's once your labelled with it it's very difficult to get anywhere with doctor's as they like to blame everything on the fibro they are very quick to start putting you on medication after medication and because you feel desperate and don't have any understanding of fibro you take it then you end up on several strong meds for years that really don't help much infact for me the meds caused more problems for me in the long run i have a rectal prolapse that doctor's blame the medication for fatigue again doctor's blame the medication for skin issues doctor's blame the medication for i could go on but think you'll get my point i am nearly 9 yrs in and at the beginning of last year i decided if i wanted to get anywhere with the medical professionals then i needed to come off the medication it has been a really long hard process going through withdrawals and pain increases having to learn how to cope on less medication and i am still only half way there but i did 8yr of being on medication that really didn't work and if i want to be taken seriously then the meds have to go i have to try another way i just wish i knew what i know now when i first got diagnosed but that's the thing with having fibromyalgia it's just a case of learning over time and because GP's aren't the best at giving you the information you need you basically have become your own doctor through research and learning to listen to your own body and there's no one size fits all either everybody experience is different hope you find something that helps you x

Eladee profile image
Eladee in reply to Milton2328

Hi Milton thanks for your reply, I agree and am a bit scared, I don’t want to be dosed up with loads of medication. Have started increasing vitamins water and exercise to try and help with the fatigue and low mood but have to be careful because of my back. I also think my thyroid medication could do with adjusting but gp thinks it’s perfect so that’s not going to happen. We have to try and listen to our body and do the best we can. I’m sorry to hear you’ve had a hard time but hopefully you’re on the right path now and will feel better soon 🙏🏻

Al10 profile image

You could try relaxation and meditation to help your pain and mood? Find a nice guided meditation or music?

Meds are good for some people but not for all. It's up to you what you swallow. Read up before you decide. I do feel some people feel pressure to do what their GP tells them for fear the GP wont want to help them otherwise. Likely there is truth in that but it's not a reason to do what you don't feel will be good for you.

Hope you feel some relief soon.

Eladee profile image
Eladee in reply to Al10

Thankyou I’ve got more time now I’ve retired to do more meditation and relaxation.

I’ve got a lot to learn particularly about pacing, I went shopping couldn’t concentrate and forgot what I needed then felt exhausted and aching afterwards 😣

Al10 profile image
Al10 in reply to Eladee

Oh dear, I know what you mean. Not much for tea that day, hey?:Pacing is really hard. Becomes a stick to beat yourself with. Trying to do everything just causes overwhelm which is hopeless because it makes you feel so useless and silly. Meditation can help so long as you don't go judging how rubbish you are at it🙄 best to enjoy the music, peace, cosyness( I generally have my blanket to ensure max snugness )and forgot if you are doing it just so.

Eladee profile image
Eladee in reply to Al10

Good advice Thankyou 😊

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