Diagnosis this morning

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Overcomer

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Good morning everyone I’m new to the forum. I basically have pain in my upper and lower back, shoulders, neck, elbows, wrists, fingers, hips and knees. Also brain fog, I wake all through the night and feel exhausted whether or not I have a better nights sleep. It’s 24-7 only some days are more excruciating than others. I’m sure you are all familiar with these symptoms. I fractured my spine in 2 places 4 years ago and I blamed that. But with mobility becoming a huge problem and pain increasing I finally decided just before Christmas to see my GP. He sent me for X-rays and I received a msg saying I’d get a call today about the results . He told me that he thought I had fibromyalgia but he wanted to rule out everything else. Previous blood tests ruled out autoimmune diseases or rheumatoid problems. Sadly he was off I assume unwell and I was called by a different GP. She has put it down as what she called widespread chronic pain and said in other words fibromyalgia. I’m not sure what she will put on my records and because I’m struggling so much I hoped to put in a PIP claim. I tried before without a diagnosis and I was turned down. So o don’t know if I will be successful this time. That’s not my priority though my priority is trying to help myself. I refused to take the amitriptyline they offered. I said I only like natural medication. I’ve started taking high dose of turmeric, garlic and black pepper supplements, magnesium and zinc and I also take moringa to Lee my blood sugar in check after they told me I was diabetic. I try to eat well too. They referred me to the pain clinic which I previously turned down because I don’t agree with cbt after experience with these types of approaches with a loved one. But apparently they offer more than that. I do not suffer with my mental health due to my faith although I used to in the past.
I have a very demanding home life having 3 children. They are pre teen and teens, which is demanding in its own ways. One has dyspraxia and needs extra help. I also home educate. I’m married but unhappily. I won’t even bother explaining that situation. I do all of the cooking cleaning, shopping etc etc in the house the majority of the time. I also have pets. But I’ve started asking my children for help. I also home educate. I continue doing what’s needed despite the pain, then suffer later on. Most evenings I can’t move. I’ve told my family I’m really suffering because of it. Both my gross and fine motor skills are highly impacted. It’s so hard literally not being capable of the things I used to do. I was so strong fit and healthy.
That is it really I just wanted to know people’s thoughts about everything please.
 
Greetings Overcomer, and welcome to the forum. We are glad to have you here and will do what we can to help.

I want to say first that I think you are doing excellently well in your handling of this and I respect and commend you for that. I am impressed by your attitude and your ability to carry on in such challenging circumstances.

I also applaud your refusal to start off by taking drugs. Drugs such as SSRIs and pain medication are necessary for some people and at some times. But they are not the be-all and end-all and I always like to see a person try natural methods first to see how far that will take them before they turn to chemicals.

I have linked to my advice post at the end of this post. It is my best suggestions for many things you can try to see if they help you. I and many others have, through our own experimentation, found many things that help without using medication. I very much hope that something there will help you.

You say you are taking supplements, and that can be a great thing and very helpful. But it is usually not wise to take vitamins or minerals such as zinc or magnesium in high levels without knowing for sure that you are actually deficient in those, as having too much of something in your system can cause s many problems as having too little. If you want to approach the supplement thing in a methodic way, get tested for your levels of vitamins and minerals, then take supplements for those you are low in. If y ou are not low in anything, try taking one supplement or vitamin or mineral at a time, for three weeks or so, and see if you experience any difference. If not, try something else. Of course, if what you are taking now seems to help, then carry on by all means. Turmeric won't hurt you in any case.

I am also not a fan at all of cbt or of pain clinics. In general, pain clinics don't know to do anything but offer prescription pain medication.
If you are not having any mental health issues, you are ahead of the game already. The next step is to find out what things you can do to help yourself. Reading about you and your situation, I feel quite confident that you will find things that help if you work at it, and I believe you will work at it.

Whatever we can do to help, you have only to ask. There are many people here who are supportive and helpful and full if ideas. People will tell you what worked for them. This is all good information, but of course there's no one thing or set of things that works for everyone. As you experiment and learn, we are here to support you all the way. You are not alone.


 
Hi thank you for your reply. I actually read your advice post yesterday and agree with what you’ve said. I understand others choose a different path and I respect that but I am extremely careful about the medication I take. I avoid big pharma meds at all costs. I did a lot of investigation when a loved one was very ill a few years ago. I have been careful to introduce things gradually, as you said you have to be so careful. I’m thinking of maybe trying cbd oil again if my current supplements don’t help. I used it years ago but I was in the early stages then. Things are pretty intense now. And have got worse very quickly.

I have come to the point where I literally have to stop when my body tells me. I love taking gentle walks but often suffer afterwards. I think with all of my responsibilities I have to prioritise. I have had to admit to myself that it’s real and by ignoring signals i suffer more. It’s weird because it’s assumed if you are doing things you are fine, when actually because it’s painful 24-7 (just sometimes it’s off the scale bad) you push through and do things because otherwise you’d do nothing. I was told I have to say when I’m in pain. I just laughed and said then I would never shut up lol. My silence isn’t an indication of how I’m feeling.
I used to feel guilty for not being superwoman lol but because people can’t see how we feel we have to be honest and just say no sometimes. I have removed toxic people who will take advantage drain me and who only care about themselves from my life. It’s actually very sad sometimes but we can only change ourselves not others and let them carry on their journey. It’s better to love from a distance and have peace.

I know why I have ended up this way. Both physical and emotional trauma. But I’m a different person now. Content with the simple things, strong emotionally and mentally and full of peace.
Hopefully I will be able to offer support to others using my strengths and I am also grateful for advice from others who have experience.
Thank you for your kind words
 
Hi there, and welcome from me too.
You really do sound like an Overcomer, and know what you're doing and need to do. 👍

I'll try to add a little to the good ideas given....
To me it sounds as if your sleep should be highest priority. For that I'd recommend identifying and reducing all insomnia triggers, trying the many supps which promote sleep, trying what sleep experts like Andrew Huberman suggest, and (like he suggests) using NSDR/Yoga Nidra to replace the deep/real sleep you can't get, because I find it even better than shallow sleep.
PIP from the many experiences I've read doesn't have to do with diagnosis, it's based on what you able to do, so to get it you'd have to make them see that you can't do "enough", also not take no for an answer, cos it's normal for 70% to be refused first time round, @Badger can report more on that.... It may not be your priority, but praps knowing how it works will make a difference.
Good that you refused amitriptyline. I didn't, but it harmed me more & more, so stopped it after 4 months.
started taking high dose of turmeric, garlic and black pepper supplements, magnesium and zinc and I also take moringa
The first 3 are good for inflammation, but I get severe stomach/gut problems from them and similar ones like ginger even if small doses, so I take many other supps for that instead.
Magnesium needs to be a good sort, like malate for fibromyalgia pain, that would also be a not so laxative sort, if we don't need that, and we need to know that the daily max. dose of 250-300mg of elemental magnesium means about 10x as much of the compound of a good sort (e.g. magnesium malate). One of the controversial sorts is oxide.
Zinc can be overdosed, and can also be a problem if we have too much and are actual deficient in copper, like me, so I agree with sunkacola's advice to get the blood levels of "all" vitamins (esp. all B sorts) and "all" minerals checked. My docs long neglected this, but chance findings (phosphate and proteins) and my reading (copper, B2) made my docs and me make sure I get the ones I need to work on checked every 2 months at the moment, until they are back in balance.
I hadn't heard of moringa before, but a 2020 review shows good evidence for it, so I might try it too.
Of course B12 and D3 are most important to check.
And there are quite a few more supps than the ones you mention which people with fibro find beneficial. Dabbling with amino acids like GABA was a godsend to me personally, even though it's complex.
With CBT I don't at all think it's the therapy type that's the problem, it just depends very much on the therapist. In our case they need to accept our pain as a reality and need to have experience with pain coping. I shopped around and ended up with a very helpful Gestalt therapist, which I had to pay for myself though.
However I recommend ACT (acceptance and commitment therapy) as more effective for us. I just did an online course and thought I already knew a lot about radical acceptance, but I still learnt a few more "tricks".
Pain clinics and rheum/fibro clinics seem to differ greatly in all countries, UK too, with the people there and the focus on or a "multi-modal" mix of meds, therapy, a bouquet of physical treatments, incl. relaxation techniques, talks on pain coping/management, it's also different if you go there, or like me stay there for 2 weeks. I don't think CBT in such a clinic is comparable to the bad experience of "yours".
Faith isn't necessarily a help, but very often, so good that it's keeping you stable. Also good if their faith doesn't stop Christians from trying Eastern seeming things like mindfulness, tai chi, qi gong, yoga, meditation.
Brilliant the way you are talking with other people, like asking your children for help, telling your family that you are not well, minimizing feelings of guilt, being able to say 'no' (praps needs to be more tho?) and removing toxic people, loving from a distance.
 
The advice about supplements makes sense thanks. I’m definitely going to look into it more after everything you’ve said so thank you.

I’m afraid we will have to differ in opinions about the eastern based mindfulness etc. although I respect your choices.
I don’t think debating it is helpful. A man convinced against his will is of the same opinion still is a great saying.
Which is why I don’t agree with people trying to convert anyone it’s a pointless act, only personal experience makes anything real. For me experience and a direct personal relationship with the creator of all things, life changing, awe inspiring, mind blowing and incredible would better describe my relationship with God/Jesus among many other words which elude me atm, rather than the flippant word faith which I originally used. I devalued what I meant by using that term. I am expanding what I meant due to your reply. I see why others are so opposed to Christianity believe me I’m not your typical Christian. I also run a mile when I meet many myself lol. I also know some beautiful genuine people. What I believe and know is more powerful than you can ever imagine though. It’s not what most assume. I am blessed to have had over 2 years studying the most incredible information which gives me great understanding of many things including the corruption in this world and where it’s roots are ,which is an eye opener, and also what the outcome is going to be. Most people are disillusioned and blind about what’s really going on in the world the church “establishment” being top of that list. I would probably surprise you with how different I am to every other Christian you’ve met. But this isn’t the time or place. All I will say is stable is a word, it’s a good word but most definitely isn’t my only experience. My experience is both humbling and awesome, being of sound mind and stable is a part of it though for sure. I was a wreck before.
I am seeking understanding of the condition to help myself as best I can. But I also know this is just temporary because the future is so amazing and all of this will pass.

There are definitely natural ways to improve health. I am always happy to learn.
Since my first post I’ve agreed to go to the pain clinic. I am sceptical but if it’s not helpful I won’t go back. I much prefer chatting to others who are in the same boat. I find as I mentioned experience definitely out trumps knowledge.
 
Hi overcomer, welcome to the forum ☕🧁 yes fibro is quite a challenging condition, the only thing I can say is listen to your body to what its telling you (when you need to rest and not to push too far) but your doing really really well if you managing those things (cooking, cleaning ect) there are people who can help you with pip and even go to the tribunals with you (if you wanted too) also how did you know what vitamins and supplements to take? (it's just I'm curious cos I take curcumin and zink for my immune system) nice to forum meet you 😊
 
I’m afraid we will have to differ in opinions about the eastern based mindfulness etc. although I respect your choices.
You may have misunderstood me, I can't see it from your reply, because it seems to be on a tangent. What I meant was only that the way these originally Eastern treatments are usually practiced in the West is in my experience and thus opinion stripped of any mindset which could perturb a deep Christian "faith" like yours - or mine, by the way..... Same in my opinion goes for "beliefs" like homeopathy & isopathy. Same as the use/effect of placebos doesn't.
Anything more than that (like quotes etc.) would be stretching our forum rules a bit too far and something at most for private messaging. But you're welcome to disagree of course! 👐
 
Nice to meet you too and thank you for your reply. You are so right and I am finally in the place where I’m listening to my body and realising that no matter how positive I feel the pain is a reality. I know that by trying to do everything I’ve suffered for it and I have people around me who need to recognise that I need help. They will only know that if I ask though. I started learning about natural supplements years ago when I was introduced to a condition called pans/pandas. You may not have heard of it. Also Lyme disease. It opened up a whole new world to me and I realised that natural medicine actually gets to the route of the problem and helps rather than just sticking a plaster over it. I agree with what others have said that seeing a homeopath or naturedoc is the best route. I don’t have the money for that so I learn as much as I can from others and researching it. It was the start of my eyes being open to things not being perhaps how I’d perceived them all my life. I honestly think I spent most of my life seeing but not seeing and hearing but not hearing. Thinking I knew things when I knew nothing. I am grateful that all that has changed. Life throws difficulties at us. But learning from them and becoming a person who uses them to help others or at least be empathic and understanding is so important.
I am definitely new to learning about fibromyalgia I actually blamed my pain on other things. It’s nice to find somewhere where I can chat with others. It sounds like you understand a lot.
I’ve always taken care of others I prefer it if I’m honest. But I will listen to advice about asking for help. Thank you.
 
I think I did misunderstand my apologies. I felt a bit like I had to explain myself and I usually do it thoroughly lol. I’m used to having to defend myself but need to learn that sometimes I don’t need to. I think it’s easy to read things out of context. I always prefer real life conversations for that reason. But at least this seems like a nice place where people behave like adults and explain what they mean instead of arguing thank you 😊
 
I think I did misunderstand my apologies. I felt a bit like I had to explain myself and I usually do it thoroughly lol. I’m used to having to defend myself but need to learn that sometimes I don’t need to. I think it’s easy to read things out of context. I always prefer real life conversations for that reason. But at least this seems like a nice place where people behave like adults and explain what they mean instead of arguing thank you 😊
Hi overcomer, welcome to the forum ☕🧁 yes fibro is quite a challenging condition, the only thing I can say is listen to your body to what its telling you (when you need to rest and not to push too far) but your doing really really well if you managing those things (cooking, cleaning ect) there are people who can help you with pip and even go to the tribunals with you (if you wanted too) also how did you know what vitamins and supplements to take? (it's just I'm curious cos I take curcumin and zink for my immune system) nice to forum meet you 😊
I
You may have misunderstood me, I can't see it from your reply, because it seems to be on a tangent. What I meant was only that the way these originally Eastern treatments are usually practiced in the West is in my experience and thus opinion stripped of any mindset which could perturb a deep Christian "faith" like yours - or mine, by the way..... Same in my opinion goes for "beliefs" like homeopathy & isopathy. Same as the use/effect of placebos doesn't.
Anything more than that (like quotes etc.) would be stretching our forum rules a bit too far and something at most for private messaging. But you're welcome to disagree of course! 👐
I replied but it’s below because I am getting used to using the chat 😊
 
I hearty welcome from me, as well, @Overcomer

I hope you can get some new ideas for coping and managing your fibro, and that they work for you!

Kudos to you for your strong will and great outlook!
 
It's true from what I've learnt that PIP comes down to how you manage tasks and not what you may have been diagnosed with. Another important point is if tasks can be repeated or not, it's recommended to fill the form considering your worst day of the week for symptoms. It is normal unfortunately for many applicants to be refused at first. The attitude seems to be if someone is that bad they will contend the decision. We are entitled to ask for a mandatory reconsideration within a month of receiving our decision. Following that we can go to tribunal where at least the experts are independent. Although stressful I would recommend standing your ground with any future application and take it to tribunal if the result is not fair. Atb
 
Absolutely!, agree wholeheartedly with badger, (if you feel it's unfair you can take it to tribunal, as there are people who can go with you and fight for your claim) also there are people who work AND claim their pip (I'm not not talking fraudsters) I've know some people who've done that, (worked and claimed legally) but whatever feels right for you and whatever it is you want to do, (like your profile pic btw, nice relax by the sea, ⛱️ 🌊💙)
 
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