Hello Everyone, I hope you’re all as well as you can be in these scary times.
I haven’t been active on here at all because I’ve been trying so hard to ‘get on with it’ because according to the Rheumatologist that’s all that will help and so will exercise. I can barely exercise at all without crying in pain and passing out. I have been to physical therapy twice and the physical therapists each time have let me go early because I have passed out and end up crying because I’m in agony.
I’ve been trying suggested supplements and gentle yoga and just everything that I’m supposed to be doing but I feel like I’m just getting worse constantly. I have managed to get all the symptoms of Covid-19 which is just getting worse too, but none of these things are as agonising as the pains in my joints and lungs.
I’m still getting this rash all over the areas of my body that are in the most pain, I don’t know if you can see it properly in the pictures but I can barely move my hands right now because of how painful they are...
The lung and rib pain hasn’t changed at all, it’s worse now I’m coughing constantly and honestly I’m just completely exhausted.
Is this really just my new normal?
Thank you everyone in advance x
Written by
Wanheda242
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According to my rheumatologist I only have Fibromyalgia no kind of arthritis even though my joints often swell even more than pictured 😞 I’m only on cocodamol and amatryptaline and they do help, but I’m still confined to my bed all day most days it’s so awful
Oh Hun I'm sad for you but glad u posted I get crazy rashes and mottled skin don't fear look typically like fibro x
If the coughing is a new symptom and it's a dry cough, and particularly if you think you have a fever please follow the advice in your area regarding Covid19. xx
Oh you sound SO UNWELL. Please if this is not your 'norm' especially the cough then get in touch with your GP. Just to rule out Covid19.
As for your daily pains and having to stay in bed all day every day, I have had Fibromyalgia for nearly 25 years and have never experienced that ever.
Yes, I have pains all over my body, and in the early hours, especially before getting out of bed my ribs and sometimes my intestines ache. I feel as if I'm 90+ years old and Im actually 58. I have some really bad days, where I can't do anything at all, and sometimes even holding a cup to tea required two hands (due to lack of strength in my wrists, and pain in my fingers) BUT, I do have days where I am not nearly as bad.
I have read that people get different levels of pain from this condition but yours sounds VERY BAD. I do hope that you have family with you who can try to keep your spirits up.
Just incase this helps, my medication consist of Gabapentin (pain relief) and Doluxatine (anti depressant that works on nerve pain). I have tried others but this combination works better for me. Its not perfect and I still get bad days and fibre flare ups but I can on most days manage to at least get about.
Exercises by the way are something that I can NEVER do. If I even try i am exhausted and in pain for approximately a week. I know that we are told to keep going, but there is a difference to keep going within your own limits and keep going by exercise. It does me NO good at all. Take care and I really hope you can find a balance and medication that can help.
I know exactly how you feel. My body swells all over. Sometimes my legs look the same width from top to bottom. Yet when you read any article on fibromyalgia (diagnosed almost 6 years ago) it will say that the patient "feels/thinks" they are swollen in places, or words to that effect. It makes it sound like we are all mad and imaging the swelling. Anyhow, my GP would say to me you're all "puffy" or "fluidy". I can see the difference now as I have a friend with rheumatoid arthritis and her hands get very swollen, almost hard, very stiff, unable to clench a fist because it is actually not possible. Although with fibro it is extremely painful trying to make a fist it is not impossible. My hands are mottled all the time and my legs some of the time. The pain was full on 24/7 for me. You will be told that you need to accept that you may not be able to do what you used to do, focus on what you can do, this maybe is the new you............ That may be true you but you can't just flick a switch and forget about all the things you loved doing and are now unable to. It took me 2 and 1/2 years to come to terms with and being told to get on with it isn't really helpful. With regards to medication getting the right drugs that work for you is key. I'm currently taking 400mg Maxitram, 120mg Duluxotine, 50mg Amitriptyline and 30mg Lansoperazole per day. This combination has worked best for me, it did take a few years trial and error to get here. I do still have a lot of pain every day but I'd say it's only half the pain I suffered in the beginning or when on other meds.
As for the Covid19 symptoms please call the helpline or your GP, it's worrying that you have all the symptoms. I truly hope you start to feel better soon. x
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