Hi all, after 6 years of test after test I'm newly diagnosed the fibromyalgia, which given the amount of pain and fact I can't walk more than a few paces without pain and developing a limp, I'm finding hard to accept. I do have osteoarthritis but my consultant said the level of pain I'm experiencing doesn't match what he sees on scans. Apparently the arthritis is mild, but I don't see how when at 48, my fingers are already bent and have nodules. I didn't realise how fibromyalgia can be so debilitating, and I almost feel cheated that my scans and blood tests don't prove how much. I can only go out very briefly if I need to go to the shop which makes me feel physically ill and exhausts me like I've never known. I can't drive the car anymore so my partner takes me everywhere. Sometimes I can't even string a sentence together properly. Frankly, and this may seem extreme, but I keep feeling I death is near, in my head I feel it has to be, because of the level of pain. Is this normal to feel this way with fibromyalgia? Is any of what I've written what others with it experience?
Recently diagnosed fibromyalgia - Fibromyalgia Acti...
Recently diagnosed fibromyalgia
Hiya, welcome to the mad house as that is how Fibromyalgia makes you feel 😏. I'm a similar age to you and I'm trying to accept my best years are behind me, which at such a young age makes you feel cheated 😔. We look pretty normal from the outside so it's hard for others to understand. I don't think doctors know what to do with us as fibromyalgia is so complex and affects everyone in different ways. It also feels like doctors slap the fibromyalgia label on us when they run out of ideas of what else it can be! That's a bit of a cop out I feel but there it is. This site is a life line and there's so much support from everyone. Keep fighting, be kind to yourself and pace, pace, pace. Gentle hugs x
Thankyou for your reply. It is so frustrating xx
So frustrating indeed 😩🤬😭 x
I totally understand all your feelings and frustration . My mobility is also affected by fibromyalgia and osteoarthritis in my knees. The pain when walking is unbelievable at times. I decided it was not going to control me and therefore started walking with two sticks, which supported my knees and pain levels and body . I lost weight to help my knees and movements.Brought myself a sit-down bike to keep my knees moving. The pain level in my knees is so strong, and pain all over my body through fibromyalgia can get me in a spin at times. However pushing forward in small steps has supported me. I can now walk around a shop for about an hour before I need to sit down . Of ccourse, when doing tthis, Iam sweating through pain but keep going where i can .
I attended the pain clinic, which has helped me understand my pain levels and mindset, which has been the best support I needed . Speak to your GP he needs to help you in understanding how to live with these symptoms.
Moving Everyhour is key because of your muscles . There is help out there, and you should speak to your GP and request he puts your name down on the list to go forward understanding your concerns.
Healthy minds are also very important to help the changes that have affected your life. These illnesses take so much away from everyone, and talking about it helps you and family members understand how they can help.
These groups are great at changing the mindset of ongoing problems that affect your confidence. Lifestyle. Mental health.
These changes are always a challenge, and therefore, you need to have help to go through them. Things can improve with little changes to start with.
The main thing is to talk to your GP and push for extra support groups to help you.
Get your GP to overview your painkillers and buy yourself a tens machine they can help. Massage your muscles with warm oil. This will help to relax your muscles.
Stretching exercises every day will help you with pain levels . Sitting exercises on a chair is also easy to do as many as you can .
There are a few on YouTube. I hope this will help you see that things can get better. There will always be times when things flare up, but having a positive outlook will help you and your family to work together. Good luck 👍 big hugs . There are so many brave members on this site and you are one of them . Take care xxx
Thankyou so much for that reply. I am under a rheumatologist who has put me forward to pain clinic, could be a while waiting though! I too have a stationary bike and haven't been able to go on it for more than 2 weeks due to severe groin and buttock pain! I can't take pregabalin because side effects are so bad, so back in amytripteline, I will take your advice and push forward with moving every hour. It's so hard though as the fatigue with it is indescribable. It's so hard not to wallow, but I'm getting so fed up, I AM so fed up with having my life virtually at a stand still, and I've got to keep helping myself, so thankyou so much for the advice. I'm pleased I found this forum because it's such a lonely isolating condition, and I'm sure some people look at me as if I'm a fraud, which is most upsetting. Big hugs back and thankyou once again. I hope you are having as pain a free day as possible today. Xxx
Hi, I'm sorry to get what you're going through at a young age. It's bad enough in your 60's! In my head I'm 21 😜. Have you been tested for rheumatoid arthritis? I have rheumatoid arthritis and osteoarthritis and was then diagnosed with fibromyalgia four years ago. The problem is, I find a lot of symptoms seem to be the same for different illnesses so it's difficult to know what is causing the issues. I find fatigue the worst culprit but that can be due to fibromyalgia or rheumatoid. There's no harm in going back to the doctor's to say you're concerned about the extent of the pain and asking for blood tests for other things. Stick at the medics , don't let them fob you off, ask for a longer appointment, you can have them when you have a lot to talk about. I hope you get some answers and some help. Sending hugs x
Thankyou so much for reply, (60's is young these days 😊) I've had all the tests they say they can give me. I have osteo in hands feet knees and spine, apparently mild though, and consultant said the level of pain I'm feeling doesn't equate with what he sees on scans. He said it's my nervous system and went on to talk about fibro. My own GP says CPS /fibro. I just can't believe I can have this much pain without anything showing up on tests! I also get rashes up my legs, red, hot toes, and rashes on face. I've shown them pics of all this. Most people would be upset if anything showed on scans but I'd be relieved! Also, I find it hard to accept the osteo is 'mild' when my fingers out out of shape, bent and have nodules. If I could afford to go private I would. I get days when I actually find it hard to speak, get words wrong or find it hard to think of what I want to say. Dozens of dizzy spells everyday. I can't go out properly either, going in just one shop makes me feel ill and totally exhausted!If I wake up feeling good, which is rarely, I get really excited and lap it up, but it doesn't last long. I'm signed off work at the moment, yet again, and will go back on just 14 hours a week, (7 hour shifts, 2 days) spread from one end of the week to the other. I do have pip, which is a huge help, but more than anything I just want my life back. I'm known for being lively and energetic, cheerful, and I am the complete opposite now which I hate. It feels like the old me has gone and now this is the new me. I only saw my GP yesterday, but I will keep on and on. I have to. I hope you are feeling well today, that is, I hope today is one of your good days, or better days. Hard to remember what that even is right now! Big hugs, and thankyou so much to take time to reply, I apologise for the long winded moaning reply! Xxx
Hi Feelinruff, I’ve been reading your replies and you mentioned rashes on your face and body. Have you ever heard of MCAS? I first read about a Dr Tina Peers discussing it. I thought I’d found my answer. It has to do with high Histamin levels mostly (that’s my understanding of it). Check it out, my neurologist did one test (wrongly) which showed a normal response, so I’m dealing with it on my own. But I believe Histamin intolerance is at the heart of my inflammation and ill health. I also have depression and have started taking Duloxetine, which hopefully will lift my mood.
Good luck and best wishes. x
Hi Tullyanne, thankyou for that, I will look it up. That's really interesting. Big hugs xx
Sorry too read this, so much too take on board and dealing with pain constantly, some helpful replies from members , I hope talking here on the forum helps now you’ve had your diagnosis xx
Thankyou, it does as as I've mentioned in a previous reply, it's a very lonely condition. Thanks so much xxx
Hi Feelinruff and welcome. You will find lots of support on here. I agree with what the others have said. I would like to add, please listen to your body and don't push yourself. It can make you worse.
A referral to the Pain Clinic is a good idea. I attended a Pain Management Program with them and it helped me to understand my pain and how best to manage it. I understand that pain affects you, not just physically but mentally - in your thoughts; emotionally - with guilt anger, frustration, mourning the loss of the life you had before fibromyalgia and more ; financially with loss of income because you can't work full time, or at all; socially - as you point out with loneliness, misunderstanding, criticisms, unwanted advice etc., and spiritual.
Some of us have other illnesses, like yourself and some of us have opened up on here about having messy houses. The main thing is not to "should" on yourself. Some members have found it helpful to get a cleaner in, even if only for a few hours a week. I have learnt to lower my standards 🤣
I believe we are warriors, strong men and women, especially together. Fibrowarriors each and every one of us! What we have to struggle with is unimaginable to most healthy people. And to us before becoming ill
I have learnt to change my definition of success. I am a winning if I manage to wash my hair!! 🥇😁
Take care, love and (very gentle) hugs,
Elaine xx 🤗🥰
Hi Elaine and thankyou. Your message made me smile, which isn't a daily occurrence these days! Gentle hugs back xxx
Aww, brilliant, thank you xx 🥰
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