Do fibro symptoms change

[Buildashed]

I have had fibro for 5 years, I have come off my meds due to side effect, I take vit D and cbd oil, when pain is bad it’s bad but I am lucky I cope. Since January I have had hissing in ear, light headed, blurry eyes, unstable on my feet and this awful tiredness, I have had blood tests which came back all clear, my GP said it’s symptoms of fibro, but is it? I would be grateful if anyone could share with me if they have these symptoms, I am getting so depressed crying every day, which isn’t like me. I get up after a good nights sleep 7 hours, (I do wake a lot) and all I want to do is go back to bed, so I lie on the settee most of the day, everything is an effort and to much trouble. I feel ashamed. I keep saying to my hubby surely this isn’t right? If any one can help me I would be so grateful I am at my wits end. Many thanks xxxxxxxxx

[JayCeon]

This c'd be fibro, which won't help you much, but what about the CBD oil? I was very tired in the daytime after taking 3 drops of 10% CBD oil for 5 days, so I stopped that, but trying 1 drop last night seemed OK. So: what is it like when you don't take it? Generally since fibro I need an average of 9-10h sleep (net!), I wake up 3-4x in seldom good nights, but usually 6-9x. I've found if I can't continue sleep enough in the morning that I can often make up for it in the afternoons, 1-2h if need be without that disrupting the next night.

[Buildashed in reply to JayCeon]

Hi JayCeon, I wonder if it is the CBD oil that is making me so tired? I never give it a thought, I take it throughout the day every day. I have never felt so tired in my life, and tearful. I really appreciate your help, I will leave it off for a while see what happens, and I feel better knowing it’s not just me that needs so much sleep. Many thanks x

[JayCeon in reply to Buildashed]

Yep - I prefer a bit more pain and sleeplessness to that tiredness and tearfulness all day! Leaving it off c'd give you first clues then you c'd try to adjust the dose up slowly...

[Buildashed in reply to JayCeon]

Hi, yes that makes sense, I will let you know how it goes. Thank you

[MaggieSylvie]

Amitriptylline is an antidepressant that is often taken by people with FM. It does make me sleepy and want to stay in bed until mid-day but it is helpful to some people. I have just gone back on it after many years' break and am waiting for my body to get used to it. I'm only on 10 mg. It doesn't help to have your sleep broken up so much that you are tired the next day, so I would suggest getting that sorted out. Amitriptylline might help or there might be something else you could take.

[Buildashed in reply to MaggieSylvie]

Hi MaggieSylvie, thanks for your reply, I tried amitryptline doctor took me of them, but I can’t remember why lol. I think I have been taking too much cbd oil? I’m leaving it off for a few days see what happens. I just get depressed as every week i seem to have something different. I need to get my head round it all. I’m so grateful for this site it’s so helpful. Thanks again.

[MaggieSylvie in reply to Buildashed]

You're welcome. Hope you have a good week.

[JayCeon in reply to MaggieSylvie]

I got 8 side effects after 4 months of amitriptyline, and after weaning it off (suggestion from my neurologist) I realized it wasn't really helping my sleep at night, but making me tired at daytime all the same - same as melatonin and CBD oil, the only meds that make a difference at all. I definitely need my average over 9h, my body does not get used to less, I w'dn't be able to work at all otherwise.

[MaggieSylvie in reply to JayCeon]

I went to bed so late last night (having got up very late) that I forgot to take the amitryptyline. I still feel dopey today, having got up about 11.30! So perhaps I should take it every other day! This morning I forgot to take my lansoprazole, which has to be taken about 1/2 an hour before eating, so I really am doped up.

[Yassytina FMA UK Volunteer]

Hello, did you tell your doctor about feeling down ? I got a diagnosis of CFS but the diagnosis of Fibro came 1st , not easy as both conditions can be similar, but chronic fatigue, lots of sleep and feeling down I couldn’t get understand what was happening , I understand being at your wits end , but I persisted and my doctor made the call of the CFS after he had diagnosed the Fibro. Seek help again at your surgery , mine was a change in doctor . I find taking each day and doing things when I feel I can , I don’t beat myself anymore like I used too as I eventually got answers, it didn’t happen overnite but a doctor with some patience and empathy does help. We do understand it’s trying to get answers so you can deal with things, even the right meds helped me as totally anxious/down , been on duloxtene 4 years and been so much better for my mental well being , but certaintly trial and error till something worked for me.xxxx

[Buildashed in reply to Yassytina]

Hi Yassytina. I haven’t gone back to my doctor, he said blood test was ok and he thought symptoms of fibromyalgia, to be honest I get embarrassed about keep calling him, each time I get something new he sends me for tests and says it’s all fibro, I might try and pluck up the courage to call him if I don’t feel any better in a weeks time, I just feel drained, which is making me upset. I really appreciate your help and kind words. Many thanks xxxx

[glochessum in reply to Buildashed]

In my opinion it does get worse with time. I’m definitely more disabled now than a few years back. I very rarely manage 4 hours sleep a night but your body gets used to it. I also have CFS, you just have to adapt and manage the best you can. I think being in lockdown has been detrimental to my mental health, I to get really down. Hopefully it will help as things get back to normal and the weather picks up you’ll feel a lot better.

[Buildashed in reply to glochessum]

Hi glochessum, thank you for your reply, it’s so kind of you to share your thoughts and symptoms. When I was first diagnosed I hadn’t heard of fibromyalgia, that was 3 years ago, I have suffered 5 years, The pain was the worst ever I never thought I would cope, but I have learnt to adapt. This year has been different symptoms one after the other, it started with blurry eyes followed by distorted vision and light headedness, blood tests negative, then hissing in my ears, weird smell occasionally, my optician said it’s silent migraines, he said it could be another symptom of fibro? Then came the fatigue omg I have never experienced anything like it, I was convinced the doctor had missed something, more blood tests came back negative. Hearing from lovely people like yourself really gives me reassurance, obviously there is more to fibromyalgia than pain, which is bad enough when it flares up! Thank you for your kind words xxx

[JayCeon]

After about 10 years of build-up I came into and have remained in a full flare of fibro since Oct19, leading to 10 months of sick leave and now struggling back. Generally, pacing and pinpointing symptoms as well as acupressure have got my pains well under control, so that's a positive change. Sometimes new problems crop up (like feet arch pain and calf tenseness at the moment), but I stay on my toes - pardon the pun - and get them down somehow, often with short gentle stretches. My Ache, exhaustibility and sleep haven't got better and are at a limit that I can only work 30-40% re. my longer activities per day are limited to about 2. My docs and I aren't reckoning with much change, it's just learning to pace better that makes life better.

[Buildashed in reply to JayCeon]

Hi JayCeon, I am so sorry to hear you have been in a flare for so long, I took a early retirement to look after my husband as he’s not been well, but to be honest I know that I would not be able to do my job any more. I too feel that I have my pain under control, ache never leaves me but I can cope with that.The feet and calf pain sound painful. I am trying to pace myself too, I think it’s trial and error, and I am beginning to come to terms with this awful fatigue, but it’s never ending, I dread what’s next. I’m so grateful for your time I am learning everyday on this site. Again many thanks

[Rainyru]

I had CFS from 2005 then after an ankle replacment 2010 which was botched so has caused so many back problems and knee and is as stiff as a board I also developed Chronic pain syndrome I then developed more symptoms which led to FIbro diagnosis 2017 over last few years and in particular after bad bout flu 2021 my fibro has never settled my doctor said its like I am in a permanent flare now .its exhausting Iv had tinnitus for years but that is bilateral and more severe I have to have maskers I am older also and I do think that has an impact on us too ....I cannot pace anything anymore and never had any support from clinics just a diagnosis and my fibro has made me super sensitive to chemicals(odours /contact) and intolerant to medication I pray you get respite. Try not to let it frustrate you as that will make you worse , taken me long time to accept that this is it , but I am still thankful of every morning God Bless you I pray you settle and get some peace soon x

[Buildashed in reply to Rainyru]

hi Rainyru, goodness me you sound as if you have been to hell and back, my heart goes out to you.

I still get no help from clinics GPS etc, I am still trying to accept that I have fibromyalgia, I seem also to be in a permanent flare, I have recently been having awful achy pain in both my groins and lower back which has been going on now for over 6 months, my GP has told me it’s Fibro but I have insisted for X-rays just in case.

There is always someone worse off than me so I do thank god for every day.

I do visit a support group once a month and this site has been a godsend.

Thank you so much for your kind words, God bless you too. Sending lots of love and gentle hugs your way x Edwina

[Rainyru]

hi Edwina sorry late reply not been great ,,,Bless you too I pray this reply finds you doing okay ..Thankyou for your concern and kind words. Like you specialists and clinics are none existent where I am also. And oh my is it annoying when EVERYTHING is put down to fibro, which if it is is not a bad thing , but its the brush off isnt it? Then we are left wondering. I too get the groin pain etc but I would push for xray ?has this been done ? Rainy 🌸

[Buildashed in reply to Rainyru]

hi Rainyru. So sorry to hear your not well. I had a X-ray last week, waiting on results. Got another appointment end of the month with rheumatologist. Physiotherapist had told me my hips are in a bad way. I just want a diagnosis ☹️

Have you had X-ray? I do hope you start feeling better soon. Sending gentlhugs 🤗🤗 Edwina x

[Rainyru]

hi not had any xrays for a good while now. plus I have never seen the rheamatologusts since my diagnosis in 2017 🙆‍♂️... please let me know how you get on and bless you for kind words and gentle hugs 🌸🌸🌸

[Buildashed in reply to Rainyru]

Hi Rainyru, Doctor called me today with results from my X-ray, told me arthritis really bad in both hips, left one is worse, told me I would need a hip replacement in time. I have appointment with the rheumatologist end of the month, doctor suggested I mentioned pain in knees, lower back and thumb joints. And they might do X-rays 🤷‍♀️. He said the pain I am getting is not Fibro pain, probably osteoarthritis. I told him my concern is I am not taking any medication for my bones, he replied, see what the rheumatologist says.

I will let you know what the outcome is. Glad I complained now, hopefully I will get a diagnosis and know what I’m dealing with.

Take care and I will keep in touch, xx

[Rainyru in reply to Buildashed]

Hiya Edwina

So sorry your hips not good , at least you know what you are dealing with there ....there are a lot of trigger points with Fibro isn't there , in the places you feeling pain , so do you think that is open for debate, that the doc says its not Fibro? ...bit yes see what rheumatologist says, Iv not seen mine since diagnosis!.. have they suggested any physio for your hips the hydro pool may do you good? Osteoarthritis seems such a chuck away statement when given out doesn't it like ahhh its just wear and tear .. but its bloomin painful !!..Glad you complained too, sometimes only way to get things done !.. take care and keep in touch yes 🙏🌸xx

[Buildashed in reply to Rainyru]

Hi Rainyru, it’s a difficult one isn’t it with Fibro, all these different symptoms, I just wish GPs wouldn’t just put everything down to Fibro, these lower back pain, groin pain, thumb pains and knee pains have been going on for two years, I know I will have to live with it, but I will need some advice how to look after my bones surely?I honestly feel like they are crumbling away the cracking and grinding is getting worse I don’t take anything, not even supplements. Oh well let’s see what the rheumatologist says, I will mention hydro pool and physio thank you.

Appointments 29th may so I will let you know. Take care xxxx

[Rainyru in reply to Buildashed]

yes please do !

and you are spot on , my bones hurt Im definately more noisy!but with the pain and amount joints etc involved we will be tense and sore and gait and posture will be out of sync, and the amount of trigger tender points we have eh, but I agree it does get rather tiring that everything is put down to fibro xxIv had blood tests and my bones calcium etc is good ,, like you I take nothing xx

[Rainyru]

hi how are you doing ?

[Buildashed in reply to Rainyru]

hi, Rainu

I’m not too bad still suffering with lower back ache that radiates to my tummy. X rays show both my hips are deteriorating so I’m on the list for replacement. I managed to get into the doctors last week, to see my doctor been trying since April, his mom has Fibro so it’s a bit of a bonus if I can see him, he sent me for blood tests I had them yesterday trying to find out what this sensation is in my tummy.