Today the ‘single thread of hope’ was taken away from me …….

liz458

I tried to paint a picture of how I really feel, but I could not find the colours to make it all seem real. Not one colour hot enough to show the burning pain, not one colour bright enough to make me wince again. Not one dark enough to show the isolation. In the end all I saw was one thin line, worn, frayed and almost broke, to my mind that one thin line is a single thread of hope …….

Poem by Bear Peterson

I have osteo arthritis and fibromyalgia for 12 years now, I am 65. The last 2 years the pain has got so much worse. My life is so restricted, I cannot walk, play with my grandchildren, go anywhere. I have general all over pain like I’ve run a marathon without training and pain in my knees and feet with osteo arthritis. I have fatigue and am like the bunny in the Duracell battery advert, I am the one without the Duracell batteries. If I use all my energy, I literally cannot move, it is like someone has cut off the power. I am very lucky that my husband does the shopping and cooking and we can afford a cleaner and a gardener. After exercise the pain in my hips and thighs is acute and the pain meds I have been given naproxen, paracetamol and codeine at night don’t touch it. I have been doing graded exercise but the pain has got so bad that I’ve had to stop. Today I saw my Rheumatologist who basically told me she could do nothing more for me, there were no more pain meds to try. Only ones that would make me drowsy or put on weight, neither of which I would want she assured me.

In that instance she took away the only thing I had left - ‘the single thread of hope’ that my life would get better eventually and this I have I lived with for the past 12 years. If there is no hope then there is nothing……..

Im not proud to say, I cried in her office telling her this is not living it was existing but that just spurred her on to tell it to me how she saw it, she was direct and straight to the point. Perhaps she thought I needed a stiff talking to to pull myself together. She talked about graded exercise, as if I didn’t know, of physio therapy as if I don’t have any, infact I have physio once a week, of managing my fatigue, I’ve been doing that for 12 years but the icing on the cake was when she told me to take time for myself. My reply ‘ my whole life is time for myself’!

I came home and sobbed. Where do I go from here?

anitarae

I’m so sorry, that sounds awful. I’m new on here waiting for diagnosis of RA. I wish you all the luck and healing cures. One thing that springs to mind, could you see another rheumatologist? Get a second opinion?

Woofy

https://community.versusarthritis.org/discussion/60260/today-the-single-thread-of-hope-was-taken-away-from-me

Could you try acupuncture? Tens machine? I am sorry you are going through this.I do hope you find another way. don’t let this defeat you. There will be a way.

liz458

Today is a brand new day and having had time to think, I know it is not the end of the road. Yesterday I was upset, today I am angry that someone in that position could wipe out any hope I had in a sentence. Thanks you for your k8nd suggestions, I will look into them

liz458

@anitarae thank you so much for your kind comments, yes of course there are other specialists and now I need to pick myself up, dust myself off and start all over again.

mouseymouse

I really feel for you, I’ve felt exactly like that myself and the Duracell bunny analogy is spot on, once your energy has gone, it’s gone. Sometimes I feel too tired to just sit there, as if even the effort of having my legs at right angles to my body is too much to do.

I want to offer at least one thread of hope. My sister is doing her last year of her degree in herbal medicine and she is specialising in the gut, or the microbiome. A lot of research is going on in this area, the mix of good bacteria in your gut (your microbiome) is a result of those which are hereditary, those which are environmental and those which are derived from your diet. Likewise the gaps in your microbiome are just as significant. The really interesting thing is that they are starting to link the microbiome with just about every aspect of your health - physical, neurological, mental, medical and emotional. Often there are family traits which aren’t genetic or a responsible gene isolated, and the research now is finding that the microbiome you inherit from your parents is just as responsible for some of these as your genes.

for instance my mother sister and I have always suffered from frequent anaemia with no discernible cause. The bacteria missing from our microbiome is responsible for the guts ability to absorb iron effectively from our food or oral medication, resulting in frequent bouts of anaemia. It’s not a complete blockage, it’s just a bacterial imbalance.

i recommend you do your own research, my psychiatrist was very supportive of this as she had also seen the research on the micro biome affecting psychiatric disorders. There are more and more herbal doctors practising now, everyone on the course with my sister is a GP or doctor already, so perhaps one thread of hope might be to do some research on local practitioners and consult them on this. I’m pretty sure the first step is an analysis of your existing microbiome to identify the gaps.

Anyway I’m only a lay person repeating what my sister has told me during her course, I’m not any sort of expert and I can’t even refer you to someone like her that you can see locally. But I hope this gives you a bit of hope and an Avenue for your research. I might publish this in a post for others to see as well.

xx

jamieA

Hi @liz458

I'd agree with @anitarae and ask to be referred to another rheumatologist - that's what I did. My first rheumatologist was arrogant and dismissive and told me on my first consultation I had to 'suck it up' regarding the pain I was in. On my second consultation I'd just been released from hospital where I'd been seen by a different consultant who said if I'd been his patient I'd be on biologics sooner rather than later. My rheumatologist replied that he 'wasn't taking advice from some doctor I saw'. By my third appointment I'd written a long letter to him detailing my treatment and condition and finishing it by stating that if he wasn't prepared to help me I wanted to be transferred to a different consultant. I copied the letter to my GP - who I'd also written a complaint about but that's a different story. Suddenly I was being referred to pain management, rheumatology physio and rheumatology podiatry as well as being put on biologics. I was also transferred to a different rheumatology consultant and so far my treatment has been far better. So there are better, more compassionate medics out there. My understanding is that written correspondence from the patient needs to be added to their NHS record whereas conversations during appointments may well be ignored and certainly not documented.

A few months later I met a woman with RA who attends the same hospital and had the same issues of arrogant and dismissive treatment and I'll never forget what she said to me. She wished there was a drug that could be administered to these arrogant consultants that would give them the symptoms of inflammatory arthritis for a month - and see how they coped - and maybe changed their attitudes.

I hope you get more help soon.

TLee

I was glad to see your second post expressing renewed hope and determination. Funny, just before I read this I was thinking to myself how up & down life with pain can be. I get very depressed at times and feel like the rest of my life (I'm 63) will just be more and more sedentary until everything just stops. Those are very dark thoughts. I am still trying to figure out if they come as a result of increased pain, or if feeling down makes me more focused on the pain. I also fight pretty severe fatigue, mainly due to meds for heart issues--I can sure relate to your image of the run-down battery! The past week or so I have felt my mood lightening and a spark of energy coming back. I planned and then planted a small vegetable garden, got outside a bit more to run the dogs (they run, I don't!) and started to get my home back into shape (little by little) after my down time. I still have pain and stiffness, and I still get tired sooner than I'd like, but I'm doing much better. Again I wonder, am I feeling better because I'm less depressed or am I less depressed because I feel better? Either way, I remain convinced that physical and mental health are very much related, and when that doctor made you feel hopeless it was a blow to both. Take care of your physical health, but don't forget your state of mind. And remember that, as you said yourself, every day is a brand new day!

PODGE

Morning

I am relatively new to palindromic rheumatism and felt helpless and not heard but anger and persistance got me answers and respect eventually. No way cured but have a fighting attitude now and will hopefully overcome but take it day by day.

I would request 2nd opinion and push for more help use your pain and anger to fight for your right for more help not get you down!

Good luck and keep positive xx

Mommiib

I feel psycotic. I am sure it's rheumatoid arthritis, but a very off-hand doctor refused to listen or look at my latest bloods. He did not look at my latest scans. It's fybromyalgia, you need to get used to that. I have been researching on Google ever since. There are lots of tests it seems that should have been done. I've learned about microcondria and ankylosing spondylitis and Mal absorption of iron. My previous doctor had mentioned vasculitis, I am often covered in what looks like bruises, but Google says they are blood clots. My heart is failing, I'm frustrated and my new doctor has the hump with me because I complained. Apparently I'm depressed. I don't think I am. I'm in pain, exhausted and frustrated. I'm obsessed with finding my answer. I'm scared that so many people I read about went invisible after being diagnosed with fibromyalgia, they all say the same, the doctors stopped looking. So many of these people finally got their answers years later. I agree with them, pain and inflammation always have an underlying cause. I honestly don't know if to stop caring, move on and wait until I die. It's not like I'm really living. I can't go out, sometimes I can't get out of bed, I'm hypoxic more times than I'm not. I'm always pushing myself, but have considerably lowered my goals. Is this my new forever?

Poppyjane

Welcome @Mommiib to the online community

Inflammatory symptoms, as you say invariably have an underlying cause and it is understandable that you want to discover the root of your pain and inflammation. Dealing with constant pain is exhausting and when you do not feel as though your medical team is listening to your concerns, very frustrating.

You have come to a safe place where we will listen to you and will respond with information and advice from people who are experiencing the challenges of living with arthritis on a daily basis. So we hope that by joining us you will not feel so isolated and invisible. We are a supportive group who offer tips from our personal experiences to help others trying to cope with similar concerns.

I attach some information which I hope you will useful.

https://www.versusarthritis.org/about-arthritis/conditions/fibromyalgia/

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

https://www.versusarthritis.org/news/2021/september/arthritis-and-depression-what-you-can-do-about-it/

Meanwhile if you feel it would be helpful to talk to someone you could ring the Helpline

0800 5200 5200 Monday - Friday 9.00 -6.00

We are glad you got in touch and look forward to hearing from you again soon.

Best wishes

Poppyjane