Recently diagnosed by msk but given no information and no treatment. Suffered since July 2020 after getting covid in March 20 and GP very little help. Had xrays bloods checked for arthritis long covid MRI for back neck and shoulder pain skin conditions boils nerve conductivity test neurology appointment pain in knees hands fingers ribs Brian fog fatigue random aches and pains in muscles and bones . Have given up on going to GP as so many individual issues but obviously all related to fibro. Only 47 but feel 77. Any time I have a normal day when I'm feeling well it wipes me out for a week and recently started to have fever and chills at night. Sleep is severely disturbed and I only go out when accompanied to go shopping and drive everywhere as walking would wipe me out yet can't get a disability badge from local council. Taken 3 years to get here and has been a constant battle. Sad it is fibro but glad I know as its worse not knowing what it is and keep having so much health issues and no one help you or tell you what it is.
Newly diagnosed: Recently diagnosed by... - Fibromyalgia Acti...
Newly diagnosed
Hi. I'm 59 and was diagnosed with fibromyalgia, osteoporosis, osteopenia and osteo-arthritis last February (2022).
I see you had Covid. I was admitted to hospital in July 2021 with a femur (top of my right leg) fracture. I tested positive for Covid in a &e. Its a long story buy I went into a coma for 5 weeks after the op. Put in ICU etc. It was when I went into the nursing home 2 months having been transferred to learn to walk that I started having joint pain.
It started in my hands and spread. I had NEVER EVER had any joint pain before.
I had a rash all over my body - still not fully gone. I kept dialling 111 as the pain was agonising. My gp FINALLY referred me to rheumatology who diagnosed all these things. Total shock. Do you think Covid has something to do with this.
I'm so sorry you feel terrible. I went to bed at 5pm. Just about to get up. I feel about 100 most mornings. It takes me a while to get going. My feet as the day goes on are awful. Pain, ankle swelling. Even my toes hurt and just putting a foot on the carpet - painful to walk.
I do hope you are OK. I try to have a positive mental attitude always but its hard sometimes.
I didn't mean this reply to be about me. I sound so selfish here. I just wonder if this could be Covid related.
It's 22.46. It's morning for me now. My hands hurt, pins and needles. Just a bundle of pain.
Hope things improve. My best wishes Golly. Sorry for the rant x
I think covid triggered it and all the issues followed it. I have my ups and downs and at time feel sorry for myself as before I was very strong lots of stamina and now soon as I do anything that I would previously did it wipes me out. Was beginning to think I was a hypochondriac as the number of different issues were simply inconceivable but have now resided to the fact that this is my life now. It's a hard pill to swallow and I just want to be my previous self but I know that will never happen and life will never be the same again. I feel so sorry for my partner as she is so understanding and compassionate and I want to be able to do things with her but it's so hard to plan anything as you don't know 1 day to another how you will feel or be capable of. Its really tests you mentally.
Hi. Yes, I know how you feel. Sounds like you have a lovely caring partner there who really loves you.
It does test us mentally. I think it makes us stronger too. It's not our fault that we got this. I agree I think Covid triggered this too.
Just do the best we can is all we can do. I had a course of CBT last year and that really really worked for me. I was overwhelmed with everything. I think that changed my outlook on this. I would highly recommend doing a course of CBT. It taught me to be and remain positive and to pace and space. Slow down in a way and not beat ourselves up over things anymore. To not feel guilty as IT IS NOT YOUR FAULT.
It taught me that "I CANT CONQUER THE WORLD IN A DAY - IF I JUST ONE COUNTRY TODAY, IT ALL ADDS UP.
I was totally overwhelmed with everything at the time. My house was a tip. I couldn't cook. I couldn't even lift a full kettle. Once I just did a country even if I just cleaned one worktop, it all adds up in the end. I find there is a lot of frustration with this. Don't you. And I feel really really pissed of are times too.
But at the end of the day, it is what it is. Could be one helluva lot worse. I just do what I can and I don't beat myself up anymore. And yes, my house is still a tip but I did clean the kitchen worktops and do the washing up today. So I did achieve something.
This fatigue is a killer. I'm in another timel zone at the moment!
Thanks for your reply. Don't forget, it is not your fault. X
Thank you and I do what I can when I can. My house used to be immaculate. Everything had its place and I was quite regimented of how and when I did everything. Lol now I'm lucky if I hoover once a week and my ironing pile is getting bigger and bigger. There is dust everywhere and it's not how I live and who I was but I guess it is who I am now. My partner has her own home and works full time so mostly only see her weekends but she is a great help and lifts my spirits. I do feel blessed to have met her but feel bad for her.
I’ve just tried to clean the inside of my front door 😩I’ve managed half and it has completely floored me ☹️so enough for today. I know now when to stop! Dust everywhere too and it is so infuriating not being able to keep your home the way you did or would like to but I am so very grateful and lucky to have one of my daughters who comes and gives the place a thorough clean every now and then when she can, bless her. I’m lucky to have her. Perhaps if you apply and please god receive PIP or do already maybe look around for a cleaner, preferably someone that someone you know can recommend and have to have trust in of course. I understand especially the way things are right now in particular it may not be possible as daily living is a nitemare re finances to most of us especially atm. Just a suggestion as with brain fog that we all seem to have the little things don’t always occur to us, believe me I know first hand 😊xx
so sorry to hear what you have gone through 🤗xx
Thank you x I'm sticking in there I'm trying not to give in to it yet and do what I can do when I can. Don't want to get anyone in yet. Maybe its my pride and stubbornness lol
😁🤗everyone deals with things in their own way and so they should 😊I would be the last person to push someone into something that they aren’t ready for or don’t want to do so you do what you can and need to for you and know that there are people always here for you 🤗xx
Hi, I'm 52 and suffered for the last 10years with pains like you have described. Back and forth to the GP who treated me for depression, osteoarthritis each time and and didn't look at the bigger picture of wide-spread pain. Was referred for physio several times and 3 different consultants before the GP referred me to long covid/cfs service where I was diagnosed with chronic fatigue/ME/fibro in May 2022. I've since had CBT which helped a little with accepting this diagnosis, but I've learned a lot about 'pacing' which is the key to not being wiped out as much, planning activities and planning rest times. It's hit me hard as I have four teenage girls who love to shop, a busy family life, but I simply can't do it any longer (or as much as I did). My husband has been very supportive the last 12months (wasn't previously), but for me the key is definitely learning how to pace yourself and not do too much all at once. I hope this helps a little. Much love to you xx
I try to pace myself but its hard as when you feel OK you just do things as you would have previously and you feel like you that you where and enjoy the moment then pay for it later lol it's still hard to find that balance as you don't want to admit defeat. I've always been the one that did everything for everyone and still have to do a lot for my mum who is 87 as I'm the only one that is local to her. I know that I need to do less when I'm well but I enjoy being and feeling like myself if that makes sense? I feel like I need to cling on to that as I know it is a degenerative condition and heard how limited some people become re their ability so want to cram in as much as I can when I can. My partner is a trained councillor and is aware of how to deal with it all. Only been together when all this began to develop and I feel she is being cheated by not getting my best. Its so hard to navigate x
So with you. Its been really hard for me too, not wanting it to beat me and trying to find the balance when you do have that burst of energy. X
It's also the fear of not knowing how bad it will become. I try not to think about it but it is always there at the back of your mind. So I try to do as much as I can when I can. Arrr I just want to be me again x and I know I'm not the only one going through it and some are much worse off than me. Booked a holiday to Tunisia for end of April. Want to be exited as 1st foreign holiday in a long time but also afraid as don't know how I will be feeling and what I will be able to do there. Don't know what to take. Do I take my walking stick I'm case my back and hip pain kicks in? If I don't take things and need them what will I do? Its a 5* all inclusive so I guess if I'm not well I can relax in the hotel but I know when I'm there I will want to see everything and that will wipe me out. Everything is such a challenge now and you have to think before you do anything now x
I can relate to you absolutely. Yes this is like myself . I have bean diagnosed with fibromyalgia also inflamtory arthritis. I have medcation for both. I am lucky to have a good doctor. There was one at my surgery who was not very nice about it. I do think it is not spoke about enough or the medical treatments are still being looked in to. I wonder if your able to see a different doctor. But I really feel for you.
I have little faith in the doctors ATM as having lived with the condition for 3 years I kind of know what I can and can't do so I try to deal with it all holistically. High strength manuka honey black seed oil vit c vit d vit b complex iron and zinc and plenty of fruit and veg and a good balanced diet. I can't exercise but try to go for a scenic walk when I can. Hope now its getting warmer I will be out more often and the pretty nature and warmth makes it rewarding and easier. Doctors don't seem to have much understanding and just read up on it but its not a condition that is the same for everyone so you can't treat it the same way unfortunately.
Hi Aka-ice, I wonder if some of what you are suffering from is long hauler’s COVID. There has been studies done that show it can cause chronic fatigue syndrome which is very similar to fibro. I was diagnosed back in 94 with both fibro and CFS and of course thyroid goiters and hypothyroidism GI issues came along too. Gallbladder stopped working, ulcers, GERD, esophageal spasms etc. this makes you feel much older than your biological age. Seek out any studies you hear about on fibromyalgia to help take the next step for a better treatment or cure. I got involved in 96 in a twin study on fibromyalgia and CFS which went from 95-05 out in Seattle Washington. It was a research study where they wanted a sick twin and a healthy twin and ran a bunch of different tests to learn what the difference was between the sick and healthy twin were to better understand these conditions which showed sleep disturbances was due to alpha waves interrupting the delta waves. Both twins showed deviance from normal but was more pronounced in the sick twin. Stress (physical and psychological) where triggering factors, our EEG’s showed some abnormalities (I don’t remember specifically what it was) massive blood work, psychological testing and fMRI showed memory problems etc. Then I got involved in another study through Patientslikeme and DigitalMe who studied blood deviances variance. The last study was EpicGenetics who did a FM/a test and COVID antibodies test. Seeing the FM/a test (even though it is controversy) gave me evidence on paper that fibro is real and validated it for me. I haven’t run across any other fibromyalgia studies since then in recent years. Don’t give up keep pushing for answers. It gets hard especially when things are off balance in your body. Over the 30+ yrs I have been given different diagnosis like gastroperisis which 10yrs later another doctor said I didn’t have it. So diagnosis come and go while others come. I guess this is normal idk 🤷🏼♀️. My last effort was to do the optimal health wellness program because depression, fatigue and pain has gotten so bad I felt like giving up. They did a wide blood test which showed my body wasn’t converting enough T4 into T3 (thyroid hormones, I had thyroid cancer in 05 so don’t have a thyroid) so was causing me to be symptomatic for hypothyroidism. I finally got on Cytomel which is a T3 hormone. They have me on the lowest dose. It takes 4-6wks to kick in and may have to up the cytomel dose. Sorry for rambling but please don’t give up keep pushing for answers. Oh and if you haven’t already join a fibromyalgia support group. They can help and understand.
The health care system is very different here in the UK and in recent years not only the health care system but all public services have suffered so not really fit for purpose. If I was private im sure there would be much more help but no point going private now as they don't help with press existing medical conditions.
I’m sorry to hear that the health care system has gone down hill in recent years. Here in the US we have both good and bad doctors. Unfortunately you have to go through the bad before finding a good doctor. That has been my experience not just with the fibro doctors but with gastroenterologists, neurologists, endocrinologists and even primary care doctors. Do you have a fibromyalgia support group in your area? Having someone who understands what you are going through helps.
hi Aka-Ice, all sounds very familiar to me and probably most on here. I’m 62 now and have been feeling 20 years older than my actual age since 25 years ago 😣I was told by the rheumatologist when I got my diagnosis approximately 6 years ago that that was all he could do🤷♀️there wasn’t any help or support with this condition, well I left the appointment feeling totally despondent as you will know yourself from experience. I was as you say, finally getting a diagnosis relieved to know what had and was and still is causing all of the pain, so many symptoms that I’d had for years and yet there had never been an approach to dealing with all of my problems as a whole 🙈it finally felt that all my issues had been connected in a circle if that makes any sense and therefore although I was sad that this is what I have and there is no cure at least someone had listened and told me the answer to what I needed and had been searching for for 20 years or more. This site is a great place to find out tips and advice from people who know what you are going through on a daily basis so is a brilliant support and resource to at least off load and know people understand and are not going to judge you. Because as we all know those who aren’t suffering from any sort of long term health conditions are extremely quick to judge 🤷♀️😡as the phrase goes‘try walking in someone else’s shoes’! And see how you feel then!! I’m very lucky to have found a wonderful GP who gets me and takes the time to listen, is non- judgmental and does everything she can to support me 🙏majority don’t! I don’t know what I would do without her tbh. You will and I hope this doesn’t sound patronising as it is in no way meant to be, learn what helps you and makes you feel better to get through each day as time goes on. I really wish I could tell you it will all be marvellous eventually but again being honest, finding what works for you regarding support from wherever that maybe, to sharing your up and downs,(here is a wonderful place for that😁! And which medications/ doses/ treatments, or mix of meds that help to even ease the pain/stress/anxiety all of which seems to be part of fibromyalgia for so many of us along with other many symptoms is the only other advice that I can offer. Please take care and don’t keep it all to yourself as I personally did for so many years. Soldiering on in silence doesn’t help you or those that are close to you to begin to understand how you are feeling. So seek comfort and strength from whoever and wherever you are able to ❤️wishing you all the very best and take care xx
The hardest part is that you look OK on the outside on the whole and it is a hidden disability. People look at you and expect you to be able to move as fast as them or instantly absorb what they are saying or be able to do certain things that you are just not capable of doing anymore. I hated going shopping especially during covid. I had to complain to a shop manager and was in tears when talking to her because of the way the shop staff had treated me. She assured me it wouldn't happen again and she would speak to her staff. It took a few weeks before I felt like I wasn't a freak in there but since then I only go shopping on weekends with my partner so I have some support. And for some reason no one says anything when she is there. I look really good for my age much younger than my years and I take pride in my appearance so its not obvious when you look at me but as the saying goes "looks can be deceptive ”. Think that saying was created for us lol
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