Guidance/ advice.

[Cygnet73]

Hello everyone I’m new here.

After over 20 years struggling with osteo lumbar/ neck and nerve route compression I’ve managed to struggle on in a 16 year job( no benefits/help/ support). Recently made redundant and not entitled to additional support so living on my own redundancy payment only which is scary. I’ve become really ill following this announcement, recent traumatic bereavement x2 and escaping a violent relationship after 11 years. I’ve been going to the GP with extreme fatigue, pain and a thyroid goiter amoungst other issues and am experiencing the following attitudes:

* It’s psychological- all in my head . Recent consultations I came out in tears. I have constant migraines and have fainting/ panic attacks after.

*Tested for Lupus, I’m borderline anaemic but treat this as it’s nothing new.

* Been prescribed all sorts of meds all of which have made me dizzy, forgetful and really ill and not improved my symptoms. Amitryptaline, Duloxetin and an array of antidepressants. I take none now as feel 💯 worse on them.

* Funally have had a review of my GP notes and now it is being said” it might be fibromyralgia.”

Doing my own research I literally have all the symptoms. Reading people’s stories on here has also been helpful.

The most recent GP appointment made me feel as though I was a hyperchrondriac and was basically told to exercise and my symptoms are because I’m not relaxed and stressed and it’s a combination of psychological. This has devastated me as managing continual severe fatigue and pain is horrendous and I know this is making me feel depressed, not the other way round. I was spoken to disgracefully and intend to complain.

I would like to find out about PIP as atm I have no income other than a redundancy. But how do I go about getting a firmer diagnosis? My first step is going to be complaint against the doctor he made me feel dreadful and it’s really set me back. I’m finding “ not being heard” the hardest thing. I’m also worried as accepted a conditional job offer but I know deep down I’m really not well enough. Any support / suggestions would be massively appreciated.

Thankyou…..❤️🫶🏼

[Dizzytwo]

Hi and welcome, you don't need a fibro diagnoses to claim PIP. They basicly need to know how you feel on a daily basis and how you cope both mentally and physically. You may like to get in touch with our benifits team for further help. You can do this by pressing on the link below xxhealthunlocked.com/fibromya...

Momo

[Cygnet73 in reply to Dizzytwo]

Thankyou so much for taking the time to reply to me. I GREATLY appreciate your kind reply and will follow this up early next week kind regards.

[Dizzytwo in reply to Cygnet73]

Your very welcome. Good luck 🤞

[Cygnet73]

Aww Thankyou Ajay for your advice. I must start to look into this. I appreciate the time taken to reply. 👍🏻💯🫶🏼

[AliMS]

You mentioned thyroid goiter? You've had a scan?It might be worth making sure its definitely a goiter, and nothing else.

You have been through a lot.

Wishing you well.

[Cygnet73 in reply to AliMS]

Thankyou Ali

Yes it’s in hand Thankyou for asking!!!❤️❤️❤️❤️🫶🏼🫶🏼🫶🏼🫶🏼🫶🏼I’m finding out Tuesday if it needs an op . Had another ultrasound on Thursday last week. It’s a growing nodule. But non cancerous so far. X

[fibrogirl41]

Bless u, i know how it feels to be depressed over an illness and having fibro, i have had antidepressents and they made me feel worse so came off them, you might benefit from hydrotherapy or something and there is a number to phone for pip it is on the government website and they will send you a form. I hope you get some hope through this horrible condition x

[Cygnet73 in reply to fibrogirl41]

Bless you Thankyou for this. Although it’s tough I’m glad I’m not the only one who doesn’t respond well to antidepressants. Thankyou for yr really kind reply and I wish you all the best. Cxxx

[Yassytina FMA UK Volunteer]

Sorry to read your experience, what a horrid doc 🙁differently seek seeing another GP as saying it might be Fibro, but you need a definite answer, some doctors will refer to rheumatologist. a helpful reply from Dizzytwo for you moving forward. Such a shame people are spoken to like this , I hope the next doc you see is much more understanding, even if it means changing surgeries. Sending you my best wishes x

[Cygnet73 in reply to Yassytina]

Yassy

Thanks for your kind reply. I’ve moved forward with a complaint and I will be definitely changing my surgery after 40 years if there is no further support or way forward for me. Being in this amount of agony in a daily basis is not normal and I think I know it’s not in my head!!!!!!!🤬🤬🤬it really makes me so sad that it seems a task snd half these days just for respect, dignity snd a bit if empathy and belief.

I wish you all the best C.

❤️❤️❤️❤️🙏🏽🙏🏽🙏🏽🫶🏼🫶🏼🫶🏼🫶🏼💯

[Lovecavatese]

Hi Cygnet73, I don’t often reply but it sounds like you’re going through the mill and I can really relate to you and your difficulties. Doctors do sometimes trivialise symptoms, we do have to stick up for ourselves as some of them clearly have no clue what other people may feel on a daily basis when under a lot of stress. Long term stress will have a physical toll, our physicality works in hand with our nervous system , I’ve noticed that our society often mentions one and the other separately. Well done for managing to keep going for so long. Sounds like you need a rest. You must do what is right for you, there are no prizes for fighting through pain.

I hope you manage to get all of the help and support that you need. Take no notice of fools, they are not walking in your shoes.

X

[Cygnet73 in reply to Lovecavatese]

Afternoon,

Wow thanks for This!!! A really empowering and pragmatic reply. You are sooooo right there really are no prizes for fighting through, trying to push my self to the limit. Needing an income though😢😩unfortunately as no help so far I have to try and go back into ft on a reasonable salary and i honest worry about that. Just don’t know how I’ll sustain it this time. ❤️❤️🙏🏽🙏🏽🙏🏽

[Nipper11]

I hear your struggles and the way these horrible symptoms are making you feel. It is great that you are listening to your body and trying to get help. I too went through many years of others making me feel uncomfortable about my symptoms and saying I was making it up. I had to be strong and believe in myself. Great that you are doing the same. Stand strong and write down a plan of how to deal with things to make your life easier. By writing things down can be challenging, but it helped me get through them, and I felt better for being in control. After years of being on many drugs I started to read through the side effects of my drugs and could see they were making me worse and took a big step in coming off theses drugs and looking at other ways to support my body and Fibromyalgia .

It taken me months but I feel so much better and lost loads of weight . I am using a ten's machine to help me with pain and taking extra vitamins to build my immune system so far so good. Put yourself first and trust your judgement because your worth it. Believe in you. Stand tall be proud you done so very well so far and let all the things that need to be changed take one step at a time. I wish you all the strength and determination to come through this. Never worry about others . You are the important one . God bless and big hug.

[Cygnet73 in reply to Nipper11]

Afternoon Nipper 11

Bless your heart for this open and honest reply. You could be speaking for me word for word on terms of an uncannily similar experience and tackling things your way.

I have done the same so far and took a step yesterday of putting in a complaint for the way I have been treated and spoken to by the GP.

I too have come to the realisation that self care, vitamins and trying to eat better are imperative. Unfortunately I have no help so I have no choice to try and get back into work but having some support via pip or something would help me. But the lack of belief, support and appropriate treatment of long term pain, nerve and dizziness seems to be a nuisance for a lot of health care providers. Tablets so far have all made me feel seriously ill and spaced out so I’m taking nothing now other than conventional meds. I’m due to start a job soon after a regular one I had for 16 years this is a similar post but really worried how I’ll cope given this recent now 3 month flair that only seems to be getting worse. Lack of family support is also hard. I’m most grateful to hear your story and the steps you have made towards a command of your conditions. Thankyou gif this. It has been helpful and reassuring …. To feel less alone!!!! God bless.

Cygnet

[Nipper11 in reply to Cygnet73]

Thank you for getting back to me. You are the brave one. Your be fine in your new job because you care . Some Families do stop listening and support is small . Your not on your own anymore you have people who understand you. Stick to your plans moving forward because you will get control of your individual weakness which control all of us at times. I can tell you will kick back and get the best out of what you are looking to do. Think about what makes you worse and looks at ways of dealing with these things one by one. I used to push myself to hard and be in great pain later. Today I take my time and can be slow but get there in the end. So I do a bit and then sit for 5mins . I walk with two sticks and find that pacing myself helps me go further. Stretching when you can will help relax your muscles and pain can ease . If you can take the focus off the illness and focus yourself on beating the things you worry about. Your symptoms can be many , therefore you will have a lot going on in your head . Stop and something that can take you away from you anxiety 🙃 listening to music or listening books or something you enjoy it does help the mental health side of this illness. Ask you doctor about the pain clinic couse which is fantastic and they will helped you . It was an outstanding experience for me and came out of that course not to be scared of life anymore .

Keep in touch and let me know how your doing . Send me a private message if you want to . Stay strong lady because your worth it.