newly diagnosed and very confused!

[SaaraMc]

Good morning!

I received a diagnosis last week from the GP after having been going round in circles for a few years having my pain blamed on various things like vitamin deficiency, anaemia, my alcohol intake, my lack of exercise, depression..

She said yes, I fit the criteria, gave me a leaflet and suggested we don’t make any medication changes right now but to look up Duloxitine and see if it was something I might be interested in.

I have an occupational therapist appointment soon for other reasons and she said they can help too, and that the main treatment is lifestyle changes and exercise.

Then I go online, obviously, and see that there’s a huge variety of people who are medicating from vitamin supplements all the way up to morphine.

I’m already on 30/500 cocodamol four times a day (for back problems) plus most of the vitamins mentioned here (thiamine, vitD, vitB) and antidepressants, and those keep me functional most of the time, but the pain when it comes is bad enough that those don’t even touch it, and my hands and feet tingle and hurt all the time, and I’ve recently started having constant migraines.

I can’t walk the length of a football field on a good day, but they want me to start exercising?

Duloxitine sounds awful, I’ll be declining that. I imagine I’ll get told to just do some exercise and see how I get on, my GPs are useless. She was very dismissive and I’m not sure she believes how horrible I feel.

Not even sure what I’m asking here tbh. I’m just worried and confused. What do you take, how long did it take to get medications sorted? How can you exercise when it feels like your knees are snapping when you put any weight on them?

[CheetieCat]

Sorry you're having such a hard time right now. I've added a link to a very recent post/thread from someone like yourself who has just been diagnosed, you might find it helpful

healthunlocked.com/fibromya...

[SaaraMc in reply to CheetieCat]

Thank you, I will have a look

[Ferndale]

Going into unknown is very stressful and limited knowledge from gp's is frustrating .everyone's symptoms are different and gp seem to think going on a 6 week course of self help is all you need..

I've no faith in nhs concerning fibro and the horrors it brings..

Wish you luck on finding some way to ease the pain.

[Cat00]

People with fibromyalgia often don't respond to painkillers, so overall they are considered to do more harm than good. If you have chronic back pain I believe you are put in the same bracket as fibro anyway in regards to the NICE guidance on pain killer use for chronic pain, so if are on cocodomol you are already being given more than the protocol would like and therefore would be very unlikely to be given anymore pain killers.

Painkillers all the way up to morphine had no effect on me so I don't take anything for fibro.

Can you swim? That might be the best place to start regarding exercise?

[SaaraMc in reply to Cat00]

Morphine worked great, my friend gave me his when I had Covid last year and was screaming in pain from it. But it’s possible the reason it works is because I’ve rarely had it.

I’m completely non-functional without the cocodamol, the first dose is in the morning and I can’t make it down the stairs until it has kicked in. Doesn’t do a lot for the burning under the skin pains but helps muscle and joint aches enough that I can at least move my legs and hands.

I can’t swim in a pool, my skin can’t take the chlorine (starts burning on contact, unfortunately because I used to love swimming). I have a friend who goes fresh water swimming and I did consider that. Scary though 😅

[Cat00 in reply to SaaraMc]

Yes I swim quite a lot but have loads of problems with the chlorine so it's not ideal. The local hospital has a pool that doesn't use chlorine but you can only get access to it if you work there which is a shame.

A lot of people with fibro have reduced availability of opioid receptors and it is thought that maybe thats why we respond to painkillers less, morphine has no effect on me at all so that chimes with my experience at least. I guess if you respond to morphine you wouldn't be in that bracket. That and they just don't like narcotics for long term use.

I wonder what might be an appropriate exercise for you, maybe armchair yoga?

[SaaraMc in reply to Cat00]

I’ll have a look at armchair yoga. I could probably actually do some actual yoga exercises as long as they don’t involve bending my knees when there’s weight on them. I’ll just try adapting everything to be done lying down instead 😅

[Cat00 in reply to SaaraMc]

People are always telling me I should do yoga but I'm not very flexible!

[fibrogirl41]

Bless you, i was worried to start with i didnt have much support from doctors i have had hydrotherapy which is good because you are in warm water, physio i hope you get somewhere ive had it for 2 and a half years i hope you are okay x good luck x

[CheetieCat]

Vibration plate might be good for you if you can cope with it, I know some people can't. You can do as much or as little, whatever suits you.

Sit and just put your feet on it or just stand on it for a few minutes every other day. Build up to doing exercises on it using the cords for a bit of cardio - or not 🤷

I've used them for years and find them so good for my leg muscles, might be worth trying?

[Vontrap]

Hi. I don’t take any meds now. I was on Duloxetine and it was good. Like a lot of drugs you get used to them. Started at 30 60 then 90mg. I had to wean of them as I believe that was the highest dose. And my body was getting used to them.

[SaaraMc in reply to Vontrap]

Yes, it’s the withdrawal that scares me, and that it can interfere with sleep, I already don’t sleep well. Looking at the different medications that are used for fibro I think some of the others look like a better fit, although they all sound pretty terrifying tbh. My mental health is a bit of a mess at the moment so I don’t even know which is the bigger concern, the doctors keep asking what I think would be helpful and I’m just sat there crying and saying ‘I don’t know, you’re the professional, just help me!’ 🙈

[Sparklingsunshine in reply to SaaraMc]

I have chronic vestibular migraines which cause dizziness, balance problems, visual issues. When it suddenly struck last year I was almost completely dysfunctional. I tried 7 different medications and couldnt tolerate any of them.

But I desperately needed something to stop the migraines. I belong to a really good migraine and chronic dizziness forum and saw Venlafaxine being mentioned a lot. Its similar to Duloxetine in that its an SNRI.

I was dreading taking it as I'm very drug sensitive but its been a huge help and I hardly get migraines now and my dizziness is much better. It might be worth considering not only for migraine but your depression as well.

The only real side effect I had was nausea but this has now gone.

[Vontrap in reply to SaaraMc]

Hi Sara. You will find that Duloxetine amotriptyline etc are used for depression and nerve pain. It’s every individuals choice. They don’t all suit everyone. It’s trial and error. Amitriptilyne made me feel like a zombie. Duloxetine made me feel normal and dulled the pain.

[Ellenindigo]

After the first three weeks of feeling really odd, Duloxetine (just 30mg a day) had changed my life - don’t discount it I would say

Cocodamol didn’t help my FM pain - I thought it doesn’t but may have got the wrong end of the stick - Naproxen occasionally however does

We’re all different though - good luck with your continued attempts

[SaaraMc in reply to Ellenindigo]

Some of the side effects of duloxetine sound really off-putting, especially the sleep related ones, I’m a terrible sleeper and not because of pain, it’s always been that way. And withdrawal. So many horror stories of people just not being able to get off it. Reading up on them, I think gabapentin sounds like a much better fit, it has benefits for some of my other struggles as well apparently. Or amitriptiline maybe. I have a psychiatrist appointment coming up soon so I’ll talk to them first as no faith in my GP, she thinks a gentle walk fixes everything.

In the meantime I might just try hibernation with a heated blanket and ice packs for my knees and wrists.

Cocodamol doesn’t do anything for the burning and shooting pains for me, or the pain under the skin iykwim, but it does help my back (I have a genetic back problem which is what it was prescribed for initially) and takes the edge off the joint pain so I’m reluctant to give it up, having had to fight really hard to get it lol.

Reading back my post and my responses, god I sound like a complete mess 🤣 need rubbed out and drawn back in again. If I was a car, I’d get written off, everything’s broken.

[Ellenindigo in reply to SaaraMc]

it’s OK - this is a safe space! we all ended up here as we’ve all ended up in a position of despair at some point.

I take a v low dose in morning and weirdly it’s hugely helped with my sleep

I had bad reaction to amitryptiline and norotryptiline - was like I was sleepwalking and huge weight gain (well appetite gain that I was unable to master 🙈)

I have PCOS as well - and OA - so you are seriously not alone in feeling overwhelmed

Keep talking - bottling it all up makes it even worse as most of us have a glorious history of masking pain anyway 🙄

x

[Sparklingsunshine in reply to SaaraMc]

I tried both Pregablin and Gabapentin for Fibro, couldn't stomach quite literally either. The SNRI family are a bit weird,many find them quite energising and struggle with insomnia, however this is usually temporary, but some, me included, found they made them quite sleepy.

Amytriptyline is often used very successfully for migraine prevention and in low doses as well. It can help even at 10-20 mg. Its probably the most popular medication members of my migraine forum have used. It has the bonus of being very sedating so could be a good fit for you. Taken at night it can help with sleep.

I couldn't take it as it gave me tremors and palpitations, which is odd because I took it regularly for Fibro years ago. The only downside with Gabapentin is it seems to cause weight gain for a lot of people.

[Athensrose]

Hi sorry to hear how your feeling and I understand your frustration. It took me 4 years and numerous changes of GP 's before I was diagnosed with Fibromyalgia then it took another year to find the right combination of drugs as I have a sensitivity to alot of drugs now. All I can say is don't give up keep pushing change your GP if you have to I know it's hard. Good luck

[SaaraMc in reply to Athensrose]

Glad you got there in the end!

I’ve went through every GP at my practise (five of them) plus some locums, thought I’d finally got lucky with a sympathetic one but it turned out she was a registrar on placement and left two weeks later 😢 After another horrible experience yesterday with the absolute cow who is the newest (psych nurse said explain your situation and get some sleeping pills, you need them - she just heard the words ‘psych nurse’ and without even asking me why, point blank refused because she hadn’t had an e-mail ‘from the professional that recommended you take them’ even though it’s something a GP has the power to prescribe no problem), I’m very seriously considering just changing surgeries altogether, they can’t get much worse!

[Dash01]

Helloooooo

I can 100 percent relate to hands and feet tingling feeling. I’ve been recently diagnosed in January however now think I may have rheumatoid arthritis but my appointment has been cancelled twice so who knows when I will actually have my scan.

I honestly feel your pain when they have suggested “exercise” my doctor literally said the same thing “you need to push through the pain”. When I tried to explain I can’t even walk some days I’m in that much pain. “ I have a lot of the same conversation with patients in your condition, they tell me that once they’ve pushed through they feel loads better” yet I haven’t found anyone who has found doing exercise has helped. I felt not listened too either & little bit like it was not another person with “fibromyalgia”. I literally have the tingling feeling all the time & I always feel like I’ve been sun burnt 🥵 it’s horrible but no it’s in my head lol.

my knees are swollen every day but all my joints swell and he basically said I was lying but hasn’t physically seen me!

The fact you have your OT appointment soon is amazing, I’ve been waiting since January which I suppose isn’t too long.

I am on pregablin and naproxen at the moment, it’s no means any better but I know it’s better than before I was on it if that makes sense but I’m still in a lot of pain

Hope you find some answers soon & keeps us updated. X

[Midori]

Yes, exercise seems counter- intuitive, but it is essential in Fibro.

It's tempting to sit around, or take to your bed, but that can leave you in a wheelchair in a few months. It is vital to keep your muscle tone, or you could end up like a spider, legs and arms contracted.

I was in a wheelchair once, I had been on strict bed rest whilst awaiting my first child for 3 months. After the delivery I had no muscle tone and it took several weeks of intensive physiotherapy to get me back on my legs! It was soon after that I started to develop Fibro, and had to give up nursing.

Also, exercise keeps your bones strong, as, if you are inactive, your body will leach the calcium from your bones, leaving them brittle and very prone to breakage. I don't know your age, but I'm going to assume you are female, and if you are getting near Menopause, you will need supplements to help keep the bones strong. Vitamin D and Calcium particularly.

Hope this helps a little, but I don't mean to scare you, doctors don't think to tell you Why you need to exercise. even a short walk every day will help, and it also helps with the pain, I find. Now I'm well over the first hurdle, (14 Years!) The pain is much reduced, to the extent I can get by on Ibuprofen and Paracetamol, OK, I'm now 75!

Another thing; look up The Spoon Theory. It will help you explain to other folk, why you can't always be as active as you previously were. If anyone tells you you are faking, or that they know someone who has it and has been cured, They are not telling the truth!

Cheers, Midori