Hello everyone, its misery guts again! Its been a couple of weeks since II was finally diagnosed, but for the past 3 weeks I've struggled to get out of bed , the thought of getting dressed seems miles away. Is this usual to have such a bad bout or am I being a woose! I'd love to hear from anyone who has the time for a chat, some advice, anything really . Alexis.
Hi Alexis,
My first few weeks after diagnosis were pretty much the same as yours, I still have days like that now. Sometimes one or two a week. It can be very draining but it is good to push yourself to get out of bed and take the world head on. Have you been put on anything for the pain yet? Or are you taking a more natural approach?
Leimodnunewra
Hi Leimodnunewra, thankyou so much for your reply. I am currently on 75mcg fentenyl patch, 10mg oxynorm, 5mg diazepam, gabapentin1800mg a day. But i was on this bafore i was diagnosed. I'm waiting for the pain clinic doctor to send my gp a letter regarding quite a drastic change over of meds which i must say is making me a tad jittery. I've been on the above meds for around 7yrs , yet only just been diagnosed! At times i thought i was loosing the plot. I hope you dont mind my asking but what meds are you taking? Are there any you would advice that have really helped you or done the opposite?
Currently I am on 125mg of Lyrica twice a day. I have had to up it quite a lot recently but when it works for me, it really does the job. However, I know a lot of people don't like Lyrica. I am also on 25mg of Amitriptyline a day to help with headaches and to help me sleep, that has been doing the job perfectly since I was put on it. I also take 20mg of Citrol which I was prescribed for the anxiety side of things. Overall a lot of people seem to turn to alternative treatments on top of their medications to help. Have you gone to physio? My physiotherapist recently recommended acupuncture to me, which a few people have told me worked for them. I have also heard that TENS machines help with the pain too, I have only had the chance to try one once and it really helped with the lower back pain I had at the time. Other than that, heat is my best friend. Going out in the cold just aggravates the pain so you really need to wrap up.
Is there any chance you can get your pain clinic doctor to get on to your gp quicker? I know how frustrating, and nervewracking, waiting around can be.
Hi also a bad time of the year always make you feel worse cold dark and winter. Just go with it don't fight it , being in pain is awful a hot bath water bottle good. Have you got fibromyalgia ? Jo
Awww hi Hunny no it's normal I have plenty of days where I feel just the same hands and fingers numb stuff as a board hurting all over hurts to stand on my feet hurt every where, skin burning weird feeling anxiety depression itratable legs my jaw it goes on and on im 49 feel about 80 and I'm sick of hearing my own voice moaning about our condition it's a ruffles condition and I feel for you all I have applied for P.I.P waiting to hear from the my life has changed so much age is creeping upon me scary as hell xxx so your not on your own sweetheart 💖💗 jackie
It is normal. Most people with fibro have Ben bedridden from it at some point.
Hi alexis10. I am sorry you are struggling, I know from experence it is very difficult I was diagnosed with fibromyalgia 7 years and RA for 4 years. I was on gabapentin but it didn't help. I am also in agony at the moment but thankful we can come on here and get support.
Do you have a good GP if so talk to them. If you are in the UK call care direct and ask for the reablement team. They can send a helper to assist you with everyday task unit you are back on your feet. The great thing is it doesn't cost anything. Hope this helps take care
Hello
I were diagnosed 3.5 years ago, and I just take each day as it comes. Today is a very, very painful day and dizzyness too. But I don't lie in bed I just potter around slowly.I think lying in bed will make you feel worse. I used to take Pregabalin but weaned myself off them because of the terrible side effects. I just take Oramorph and Paracetamol it takes the edge off..Its a horrible disease that we all on here have, but each of us have different ways of dealing with it. My left side today is so sore including my shoulder blade so I have just taken Oramorph and are using a heat pad as we speak...its so warm... Keep well, and come on here every day for a chat and maybe new ideas..Regards..Anne..