Hi everyone. I'm new here. I've read lots of posts which are really inspiring.I was diagnosed a few days ago by rheumatology. I asked GP what happens next. Was told to do my own research and make life style changes that work for me? I've read so much information and feel like my head is spinning. Some says exercise others say not. I don't know where to start. Also I can't seem to regulate my body temperature, my legs feel tight like they will snap, my arms and shoulders burn if I try to lift anything or hold my arms up, when I get extreme fatigue my throat feels sore and my glands in my neck swell, have also developed a rash on my cheeks. Is all this usual with Fibromyalgia? I'm so sorry for the long post. Would be really grateful of any advice and where to start. Thank you. X
Just diagnosed: Hi everyone. I'm new... - Fibromyalgia Acti...
Just diagnosed
hi
welcome to our lovely forum, I know it’s all a bit overwhelming and confusing, did your doctor discuss any pain medication?, the best thing we can all do for ourselves, is pace, light stretching in the morning, try and keep active, if possible, but not to feel pain, try hot and cold or one or other on your shoulder, and legs, a lot of us use heat pads, and those, like me, that can’t tolerate the fm meds, pain cream, I personally use Movealate, we have to listen to our bodies, and not to push to much,.
There are lots of people on here, that can help, although we are not medically trained, we all try and help each other, so if you have any other questions, feel free to jump on.
Take care xx
HiThank you so much for taking the time to reply, I really appreciate it. Its definitely overwhelming and a lot to take in. No the doctor just basically said got on with it. I've really tried to read lots of information but I just can't seem to take it all in yet. I will get some of that pain cream and give it a go.
Once again, thank you for yor help
You are very welcome, it takes time, and if you get too much pain, speak to your doctor about meds.
Kat791 has mentioned about your rash, please check all your replies, when you can.
Hi Moominflower
Body temp is awful isn't it, our thermostat is totally wonky. Loose clothing, layers for easy stripping on & off (although I never seem to get to the layering point before blowing a gasket 🥵) and natural fibres are good.
Stretching exercises works well for me, little and often throughout the day. Also find magnesium oil/lotion helpful. Epsom salts in your bath too if you can have one.
For burning, anything menthol or peppermint especially on the legs and feet. Freeze sprays are good too. I get the throat issues, affects the voice too sometimes.
I would check in with your GP though regarding the cheek rash and anything else you're unsure of. Hope some of this is helpful.
Take care x
HiThank you so much for taking time to reply. Yes, the thermostat thing is awful, I'm either freezing or boiling hot. Will give the magnesium and Epsom salts a try, I've just got a peppermint foot and leg spray.
Thank you. X
Hi there,
I am concerned about the fact that you have a cheek rash. That is a classic symptom of lupus. I think you may need to go back to GP/rheumatology, because lupus is not fibromyalgia and will only get worse without treatment. I'm not sure what the rheumatologist did or said to you, but if it was anything like the appointment I had with an NHS rheumatologist then you could have easily been misdiagnosed. I saw them for maybe 15 minutes, and they barely examined me. They tried to take my blood pressure with an automated blood pressure cuff, but my blood pressure was so low the machine could not read it. They still just told me I have fibromyalgia without ruling anything else out and sent me on my way though. Please, please get yourself checked out again, if you can.
Also, have you been checked for issues with your thyroid? Hypothyroidism can cause your thyroid to swell (which is in your neck) and cause fatigue and can cause you to feel cold when you shouldn't.
HiThank you for replying to my post. Sounds like you've had a bad experience with your appointment. I wasn't in long at all but they had looked at my notes and diary I had kept for the past year and a half before seeing me.
Had every blood test possible done. Thyroid all fine. Thought I had rosacea but apparently there is a thing known as fibro rash. I have mentioned the lupus thing but apparently that's butterfly shaped and goes across the nose which mine doesn't. I'm going to make another appointment and have a discussion with my GP.
Thank you. X
Hi Moominflower.
Ask the GP to refer you to a pain management clinic. If I remember rightly, it's a six week course, I did it on zoom during lockdown but I think it's a group meeting now. You learn a lot and can ask any questions you have. They will send you a really informative booklet which I occasionally refer back to still. It really helped me. Best wishes 🙂
Hi.Thank you so much for your reply.
That sounds really good and would be really helpful. Will ask my GP when I next see her and hopefully she will refer me.
Thank you. X
Hi sorry to add, for me, the pain clinic was dreadful, less than 5 mins. The consultant was rather rude. My point is you are in the right place here with people who have lots of different experiences, pick and mix, see what works for you,best wishes 😊
That's sad you had that experience, however, I think you are talking about a consultant appointment whereas I meant the group meetings which last for around 2 hours (with a break) and are for six weeks. They are very informative and you find out things from the others in the group who are suffering like you. Have a look into it, they are very helpful. Best wishes 🙂
Thank you I was offered this by a physiotherapist. It was for one hour for 4 weeks unfortunately it was much too far away. I'm just recovering from an 18 month flare and now just happy to be able to get out and do some gardening 🌻
Oh gosh you poor thing, that's a terribly long time, must have been awful for you. Normal people do not have a clue do they😔. I am glad you are a little better , gardening and the sunshine are such a positive for us. Just wondered if they still do online courses, because like you I would have found it very hard to attend a physical course. I hope they do and I wish you all the best. Take care of yourself 🙂
It is very overwhelming dealing with something that affect everything about you. It taken me years to listen to my body and researching what the best options for me and i am still Learning how to make my symptoms less stressful in affecting my life. After many years of taking many pain killers i decided to take myself off my pain killers and look at using other options to improve my mobility and symptoms. After reading the side effects on each pain killer i understood that some of my symptoms were linked to the drugs.
I think you should look into asking your GP to put you forward to your local pain clinic these groups help you understand how to live with pain.
The next thing is join the talking therapist on line and talk to this group about how your feeling.
Look on YouTube for chair exercises to keep you moving . Look at your diet and lifestyle. Some foods can affect your symptoms. Drink enough fluids everyday . Think about how you do things and what needs to change to improve your symptoms.
Take fibromyalgia vitamins you can buy these on amazon. Eat fruit that support your immune system things like strawberries and blackberries and blueberries. Take vitamin C . Use a Tens machine for pain.
Write you symptoms down this will help you understand if there is any changes or improvements.
There are a few groups your GP can put you forward in your local community. You will read lots of stuff about this illness the best way to take advice is to get to know your body and symptoms first.
Your mindset is key to understand you will get hold of these changes ahead. You been brave enough to look at how to help yourself which is the way forward.
The more knowledge of your symptoms and illness is Important to improve your lifestyle. Stretching exercises is also key to help your pain levels. 🙂 remember you are going to make changes and come through this .
understanding the messages your body is giving you.
There will be ups and downs however you will come through this. I hope some of my suggestions will help you .
Look at ways of cutting back on stress as fibromyalgia is affected by stress.
Listen to storybooks or music or podcast to make you relax . Take warm baths to relax muscles.
Keep moving to maintain your strength 💪 and mobility. Good luck and let us know how things go. Good luck. Big hugs 🫂 🤗 ❤️ take care xx
Thank you for your reply. I am grateful for the help and advice.I've been looking to find a local group but have only found online ones so far, will keep looking though. Havent looked at talking therapy so will check that out. I definitely don't have enough fluids so that's a good tip. Really need to work on my stress levels, I've noticed that if I'm stressed my symptoms are worse and it wipes me out. Have just started to listen to sleep stories before bed to help me drop off.
Thank you for all your suggestions. Going to take everyone's advice on board.
Wishing you well. X
HI Moominflower. You are obviously overwhelmed with the diagnosis of fibromyalgia. We can all understand how you are feeling. Nobody wanted to join this club!
However - you will get lots of help and advice from the fellow sufferers on this forum.
I can only tell you what I have discovered. It’s taken a long time and I’ve been down lots of trial and error routes. Medication doesn’t work for me. Exercise helps - stretching and pacing are good. Diet is the most important factor. Eliminating sulfites/sulfates are crucial.
They are a preservative and added to food and drinks to prolong shelf life. They are also added to swimming pool water and lots of toiletries and medications.
It’s very difficult to eliminate them from your life (well nigh impossible!) If I only eat home cooked food - no alcohol/chocolate/frozen chips/ready meals I feel pretty well. But of course - sometimes I eat out with friends or go to someone’s house for a meal - and then I eat food that probably has sulfites in it - back come all the fibro symptoms.
Over the past few years there has been a lot in the press about eliminating UPF (ultra processed food) so maybe other people are realising the damage these additives and chemicals can do to sensitive individuals.
Just my opinion - but I think fibromyalgia is one of the worst symptoms.
Good luck. Best wishes Dianne xxc
Hi there.Thank you for taking the time to reply.
I'm so grateful to everyone on here for their help. It's nice to know I'm not alone in feeling overwhelmed and struggling to get my head round it all. Seems most people are recommending stretching so I'm definitely going to give that a try. Just had a conversation with my daughter about processed food and eating healthier more near to natural foods.
Think it's definitely going to be a trial and error process.
Thank you. Take care. X
Hello and welcome, I think you will find the forum a good place too have a read , I was amazed too learn so much from people and I’ve stayed with this brilliant forum ever since, take it one day at a time, body temperature can be a problem for some(I am currently struggling with this extreme heat) we say pace yourself as much as you possibly can in a day (harder when a person works) but taking breaks does help as on better days we think yippee keep going and the next day suffer . Extreme fatique I do find a struggle , I do have CFS as well, some do say diet is important and cut out a lot of sugary foods and processed things. eating healthy is a good thing anyway . I do take a soak in the evening with some Epsom salts and I do find this helps me relax and helps my aches. Learn too say no too social events or invites if you feel you need time out, I found I was making myself worse for trying too keep up, what I say too friends now is you will get a phone call on the day /morning , they do understand when I need too take a step back. Xx
Hi. Thank you for taking the time to reply.I am really glad to have found this forum and am really appreciative of the advice people have given me. Its so reassuring. I need to work on pacing, currently if I do happen to have a bit of energy I try and get more done, then end up feeling nauseous and like I have the flu. Finding this part hard to adjust to, I used to always be so active and would be able to carry on with gardening/ decorating etc all day. Have heard others mention Epsom salts, they are on my list to get Tommorrow.
Thank you. X
I think that understanding the mechanism of Fibromyalgia is one of the biggest things that can help you, it’s quite difficult to take it in and accept but when you can your life will change.
I researched the mechanism of why the pain exists without injury or illness and why it was so widespread; the answer was what eventually got me to accept that it was just there, in simple terms basically it’s a brain malfunction that senses you might be in danger, its reaction is to send out pain signals, but as it doesn’t know where the danger is, it sends out widespread signals. Unfortunately this is the reason why it’s so difficult to treat and as yet there’s no cure. Keeping calm, avoiding stress and getting the best sleep you can are all important and a healthy diet is very important, especially concerning free radicals and other oxidants. Avoid processed food if you can and eat a wide variety of different foods. Everything helps, if you can get some simple exercise like daily walks that’s really helpful.
You might find that Magnesium based salts are useful both for going in the Bath and taking as a supplement. I use Magnesium Chloride rather than Sulphate (Epsom salts) because it’s more easily absorbed so needs less, be sure to get a medical grade because the commercial grades may have nasty contaminants. Before bedtime I take Magnesium Glycinate, it’s supposed to help with sleep, I’m not as bad as I used to be since taking it.
HiThank you so much for replying. That's really interesting and makes complete sense. I read somewhere that past trauma can also cause it, which makes sense for your brain to perceive danger. Have just got some bath salts so trying those. I'm working on sleep which is a bit of a nightmare unfortunately, I often only get a few hours sleep a night, will have a look at the magnesium for bedtime. Got a gp appointment this morning, will see what they come up with.
Thank you. X
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