Break from meds for 6 months as agreed with doctor as I had got to a good place , wish I ha dnt as now having a flare

[carol789]

Break from meds for 6 months as they affect my skin with hives and I'm all scared badly on one arm, now having a flare as expected. Knees and lower arms and feet burning and stinging/throbbing, scatter headaches and tmj . weak, tired, fed up.

Spoke with doctor, really hard getting in touch, had to wait 4weeks for appointment and could only have phone. Asked to go back on gabapentin or similar and doc said no will give you co codomol as it sounds like flu or perhaps covid? Explained it's same pain and symptoms I've had for years and that I have covid lateral flow tests which I take for work and they're negative, but nope, just co codomol. No offer for face to face apt . I know they're busy, but I've had fibro diagnosis for over 12 years took about 8 to get any diagnosis before tgat. I can feel it getting worse all the time and scared will become really bad flare with me ending up in wheelchair again just to get around.

[Yassytina FMA UK Volunteer]

Sorry to read of this, 4 weeks is an awfully long time, I would ring again and say if doctors are busy can I have an appointment for one of the practitioner nurses ,you don’t want phone consultation. You might get seen quicker, I do tend to see mine now rather than go through waiting so long for the doctor s , my surgery normally gets them to triage you over the phone 1st and then go in for an appointment. Say your getting very anxious that symptoms have got worse, fingers crossed you can push for this and get seen, take care xx

[LisaSnow FMA UK Volunteer]

It certainly doesn't make sense to me what he gave you. However, if you cannot work around it why not just try it for a few days and if it helps, follow the complete instruction (stop when you should) and see how you respond. If it doesn't work after a try, call back immediately and said you did what he told you but it failed so please give me my old med back.

[uggycat]

Hi Carol if you read my posts i am off all meds, still suffering withdrawals. lf your doc tor made you stop Gabepentin suddenly you will get withdrawals. If you feel to bad you can always turn up at A and E and ask for an assesment and explain your situation

[carol789 in reply to uggycat]

Hi Uggycat 😊

My own doctor told me to come off them (gabapentin and sertraline) slowly, before starting duloxetene . It took 6 weeks to scale right down and then I thought well I can handle this, as Covid going on I could work from home and things didn't seem so stressfull, as this was January this year. I was then scared to start the new meds, I had put lots weight on with gabapentin and sertraline, and felt awful,also my arms had really bad like hives and permanently painful and itchy they are really scars now. and

This all made me scared to start a new med and i thought weighing up what I could handle more the pain or the bad reactions to the meds. As feeling I could handle it , I've really tried to not go back onto any meds, thinking wow I'm doing well, maybe perhaps I'm really better, but think it was due to less stress and less exertion during vivid as working from home, obviously big mistake as now having flare, I've had worse, but the pain is getting really bad also my movement and concentration, so I think big flare coming. I'm still working from home, definitely could not manage work otherwise at this point.

so I now don't feel brave coming off them, feel stupid !

I managed to speak to receptionist told her and she said will take ages for appointment with doctor but she would get someone to speak to me. I then had a call from pharmacist who visits surgery, lovely lady, she said that no harm in starting theduloxeten but would need to book an appointment with doctor first and can take weeks, so need to ring in Monday even though I was speaking with her on phone when she is in the surgery ? . So no nearer. I'm now scared about starting new medications and what effect they can have on me, but know I need some help to reduce the pain. So many people around me friends and famiy say it's in my head, need exercise, get out in fresh air, the more fit you become the less you'll think a out it! This is what also made me want of medication, but they're wrong, how can you get to do more exercise if your body feels heavy like lead and burning pain and pins needles, legs arms feel like they are bruised, scatter headaches, and you can't sleep so always tired.

Sorry having a rant as so confusing, don't people get that we don't want to feel like this! Cruel when people don't understand. They see you well one day and then if you're Ill the next it's all in your mind.

Sorry came in here to say thank you for replying and as feeling sorry for self ended up having a rant. Thank you and everyone who has replied, don't wish this on anyone but glad to know I'm not alone with this fibromyalgia.

[uggycat in reply to carol789]

Hi Carol that is terrible to be left like that. coming off morphine was different for me had no choice because when i called ambulance and ended up in A and E they told me my behaviour was due to Morphine. Also morphine was poisioning my body.. But remember if pain gets to bad can call ambulance. as i said i had a lot of good advice from hospital because they examine you thouroughly. good luck

[Makie-Uppie]

You are the patient, you have the symptoms or the condition to which someone gave a name, the doctor or someone gave a name to that which you have that is all they did. Persistence is the answer and if you can not do it get someone who can, the opiate bandwagon is over and the new nad wagon is mental health, pain and suffering is bad for your mental health, so on you go, but get some help, wish I could help you but I am just about over for the day.Don't forget to tune into tomorrows episode of Fybriod with a Keyboard.(plays jaunty jingle)

[carol789]

Thank you all, really grateful for all the replies. I do have anxiety so do get down especially when having these flares, took me a long time to come to terms with fibro. I also have cfs was diagnosed too by rheumatologist. This doctor I spoke to isn't my normal doctor at the practice think locum not spoken to this one before. I'll ring again to see if nurse can do anything and perhaps I can speak to my regular doctor fingers crossed, they take ages to answer their phone though, I expect very busy with covid and such. Thank you all again, I'll keep trying , I've been trying to rest since last Friday and not getting better. Have a restful night all, even my blankets are heavy 😞 night night.

[Hidden]

Oh my hun you are so brave to do that in the first place! I don’t think I could do that! I wish I could help and give you some magic cure! All I can say is be persistent with your dr good luck Carol789 you deserve a medal 🏆🎖🥇🏅🤪