Hi there Brothers and Sisters Dr called yesterday she's not concerned about my blood results telling me I should learn to live with Fibromyalgia am trying
she said she wil call again in 2wks Thanks to those who encouraged me to contact my surgery stay safe all ...
Hi Pf 🙂🌿🌸🦋
I’m sorry your doctor wasn’t much help with the answers you sought.
This condition is one of mystery to the medical profession…I was diagnosed over 50 years ago when all they knew was to use your description of function and not being rested after sleeping plus the pressure points test.
I literally was given the diagnosis and nothing else. I’ve had to live the experiences. As time has passed and with the blessing of this site I’ve learned that our experiences are as unique as we all are as individuals. The commonality being fatigue and widespread pain especially if not pacing ourselves.
You can always ask questions whenever you need/want to. These lovely people won’t judge because we all are going through this together.
Please take care and I’m here whenever you need me.
Love and prayers,
EJ 🙂🤗♥️🥰🙏🕊🌿🌸🦋
Same here; Been diagnosed about 20 years.
Cheers,Midori
Hi Midori 🤗
I’m sorry that you went through the same experience. When on our own with a new diagnosis/condition we become pioneers while enduring the unknown.
I was born sick and therefore never known anything else…just more sickness every year. I’ve always pushed through everything until I couldn’t after an unfortunate permanent spine injury in 2014.
I think the worst part is the judgement placed on me/us for looking perfectly normal but as we all know …not.
I send you my best wishes in all things and keep you/everyone in my prayers regarding all things especially better health and quickly getting treatments needed to attain good health and quality of life.
Take care sweetie and I’m here when you need me.
Love and prayers,
EJ 🤗♥️🥰🙏🕊🌿🌸🦋
Many thanks for your good wishes; I'm a tough old bird, I get by.
Cheers, Midori
I'm so glad to hear someone besides me say that.
"No, I am not up to doing that, no matter what you think."
fire that dr.
It's such a shame a GP give such a negative comments. There's lots your doctor can do for you.
She can put you forward to the pain clinic who will help you understand pain in all different ways. Plus there courses living with long term illness 🤒. These teams give you tools to work with and understanding your changes in your body.
You can put yourself forward to talking therapist website for your localcommunity. This team allow you to talk about your situation and much more they have great advise. Using A tens machine will also help you.
Unfortunately doctors today don't offer these services unless you high light them.
You need help to live with this illness and emotions linked to your lifestyle changes due to fibromyalgia.
Please keep pushing to get support because you will achieve so much with these teams and feel more comfortable living with a long term illnesse.
Stretching is something you should do so many times a day to support pain.
Look on YouTube there a few on there that will help you . Look at your vitamins levels and diet you can buy vitamins for Fibromyalgia on amazon and they do help. The key messages is for you to stay well and healthy. Look at foods which could create flare-ups. Understanding fibromyalgia is hard at times so start with simple information and build strength from the lifestyle changes you might make.
Your not on your own and many members on this site will support you. Keep moving and drink more water its good for your muscles and pain.
Because the quality of your lifestyle is very important 👌 push to get the best for You. Because Your worth it . Just because you have fibromyalgia doesn't mean there's no hope of improving your health.
Take care 🙂 xxx good luck and let us know how things go. God bless x
Hi Nippers 11 I have been taking vitamin D3 and k2 I feel it is helping with the burning pins reaching my bones most of the time if that makes sense I was refferd to a social prescribing team who sorted counciling and a assment at a balance clinic I also have PAD because of this my the main artery in my left leg is blocked and to risky to operate...
You stay big smile...
Where do you find one of those pain clinics that helps you understand pain in all different ways! My pain clinic told me I was faking to get away with something. I was too clueless to know they thought I was drug-seeking. (I wasn't.) I left crying.
I've looked and looked for courses living with chronic pain.
Do you have any YouTube suggestions?
Thanks!
Your GP would forward you to pain clinic course's who call you once a week and go through a video link with others who have the same problems and share knowledgeand selfhelp ways for you to understand pain throughoutyour body and how your family might also be affected by your illness. No pain clinic would not advise you of what was said to you as no one can see pain it's a overall symptoms that comes from the mind and anxiety and nerves/muscles and movements and much more symptoms.
I feel upset that whoever said them unkind words need to be reported to your local authorities it's there job to give you a better understanding of pain and energy levels and so much more to give you Support.
This just isn't the pain courses I am talking about. If you look on your local community website for talking therapist they will be able to advise of courses available through referrals. You can put yourself forward without talking to your GP . While you are waiting there are many podcasts about pain and how to control it and understand it. Plus there is information on understanding fibromyalgia and better ways to live with it.
There is loads of information linked to researching the facts on this site . Because GPs are going to cut back on giving out long term painkillers it's important you push your GP for more ways to live with your concerns.
Your mental health and confident and life-style and attitude all changes when living with long term pain. These are life changing Challenges 😌
There is simple chair exercises on YouTube which will help with pain . They keep the muscles moving and building strength. Plus it good for your mindset.
My courses were provided by the local community and long term plans to support myself which was very good for you to make changes throughout your lifestyle.
The mind changes when you live with long term illness. Your confidence , your ability your attitude, your plans to go out. Your Personality changes throughout pending on how you feel , at times you can feel lonely and miserable and feelings do the family understand. All of this is talked about.
I found it very interesting to listen to others about pain and there suggestions as to what has supported them.
Stretching exercises everyday will support your muscles and ease pain.
Keep moving and drink more water 💧 to ease the muscles.
Buy a ten machine to support pain.
Loose weight if needed.
Look at your diet. Study which food can create flare-ups.
Take fibromyalgia vitamins on amazon they do help .
Keep your Vitamin C level high.
Take magnesium tablets and use magnesium oil spray to rub into your muscles.
Listen to your body messages.
Listen to fibromyalgia podcast on amazon music.
Keep your muscles warm with a heat pad in the cold months .
Think about how you use your body /movements with pain because you could be making it worse .
I feel there so much more you can push your GP to help you to improve you lifestyle and quality of life. These are just suggestions which have supported me and worked.
However we are all individuals and therefore it's what works for you.
Keep pushing to get this extra help to get a better understanding of the quality of lifestyle with pain. Keep in touch and good luck . Big hugs 🫂 xxx
I feel your pain….literally. I’ve got a blood test checking for antibodies next week as on top of the usual fibromyalgia symptoms I have very dry eyes, mouth, post nasal drip and sternum pain ( not the usual costicondritis pain I have) He said it’s doubtful to be anything auto immune. I despair as we are advised on here to investigate any changes but when I do I have such a battle.
You have had some lovely informative replies so I wish you well going forwards.
Hi I whould like to see if she had it whould she learn to live with it I don't think so people that don't suffer from it don't realise how bad it is everytime I say to my husband how much pain ime in he just says I have pain I told him I whould like him to have fibro pain for one day to see how bad it is he whould soon be screaming out he thinks it's just like mild ordenary pain it make me really mad at people that don't realise how bad we are suffering especially when the pain killers don't work sorry to your suffering sending some fibro hugs to you and all are fibro family 🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗Xx Tillytrots.
It's not just me! You ranted for me. It was wonderful to hear.
Hello, sorry too read your doctor is not much help , if they had the condition themselves perhaps they would be more helpful and kind, I think we help each other here by talking ,I’ve felt lately when I’ve been too the doctors I get a blank look, I had a really good doctor but he has left and training students now so that was a great shame. Our surgery has different people every time I go now , gone are the days when we got too see a regular doctor who actually got too know their patients. You stay safe too.
Hi there. Sorry to hear you were treated so insensitively. When you say you were called by your Dr about your blood test results, what blood tests did you have done? And were the results said to be normal?
In my experience as someone who was incorrectly/incompletely diagnosed with fibromyalgia for 18+ years, can I suggest that you ask for as copy of your blood results with the reference ranges alongside them so that you can look yourself to see if any are actually outside the range?
My bloods were said to be either normal, or not significantly out of range, when clearly there were all the signs of my condition (anti-C1q antibody positive urticarial vasculitis syndrome) in them. Nobody joined it up despite me referring to the test results that weren't within a normal range.
Many other inflammatory conditions can cause the fatigue and pain associated with fibromyalgia. It is always worth checking in with a good rheumatologist and getting checked out. Your GP cannot run all the tests. For example, GPs can't test for the anti-C1q antibody. They can run basic blood tests on your complement system (e.g. C3 & C4 importantly) and should definitely do this for you if not already done.
All my 'standard' inflammatory markers, such as ESR and CRP, were always normal, but this doesn't mean you don't have inflammation going on in the body. 15-20% of people with autoimmune diseases don't make these acute phase proteins and are described as sero-negative. Therefore, the bog-standard blood tests are not as fail-proof as many drs make out.
If you have not had a referral to a rheumatologist yet, please consider asking for one. If your GP is reluctant, push. (I know it's hard when you are ill and in pain).
And by the way, many of the so-called classic fibromyalgia sore points I had actually corresponded to joints where I had bursitis. This was confirmed by ultrasound scans and treated with steroid injections into the bursa. This greatly improved pain in those areas.
Fibromyalgia is a real physical condition, but it might be that something else is actually going on that can be more definitely categorised and treated. You might not get cured, but you might get better help and some relief.
I wish you and all on this site better health and happier days ahead. Don't give up 🍀🤞🏻
Learning to live with it sounds as if your doctor needs to keep up to date on Fibro. Fibromyalgia UK can send your doctor information leaflets.
The trouble with Fibro is that it has many similarities to CFS, MS and Long Covid, and many doctors can't be asked to do the full investigations, Fibromyalgia is a diagnosis of exclusion, which means all avenues have to be explored first before a diagnosis is made. I had to tell my doctors that I wasn't in pain due to depression , but that the depression was the result of the pain!
Cheers, Midori
Hi Midori I have struggled with my mood for years fibromyalgia has made it far worse I get such anger build up my creative spirit is slipping away which has helped me for over 40yrs
Even reading writing pains me even with glasses my optishion tells my eyes no different in my script stay safe Sister ...
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