Advice needed, please: Hi everyone, quite shocked to be... - NRAS

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Advice needed, please

Crazyfamily profile image
26 Replies

Hi everyone, quite shocked to be looking here as wasn't expecting my doctor to tell me she think I have RA!! And just worried I have and worried as I dont really know much about it, sure I should wait for results, but I'm really anxious if I have.

I will probably bore you with my problems but here goes.......I went to see my doctor for a normal check up, I have a prolapse womb and bladder and chronic pain due to mesh put in and I suffer will deep depression and anxiety, not that it related to this page but my doctor likes to keep a eye on me, shes brilliant, so were having normal catch up, I said instead dr can I just not talk about that stuff because I've been feeling really terrible for months and i never mention it as keep thinking its down to everything else so I told her, I'm feeling really weak like proper exhaustion needing to sleep alot, go up 15 stairs to my bedroom and feel like I've been running, arms feel really weak like I have no strength, have to keep opening and closing my hands when u wake up cause of the pain, I thought I'm sleeping with punching hands, I said just everything hurts needing to really stretch my legs when I get into bed my calfs hurt.

She looked at my hands and said they are really red I said yeah and my toes are too!

She said it could all be down to stress as I have 4 children, one teenage autistic, mum has cancer, kids dad had throat cancer last xmas nursed him better now just been told he has lung cancer 😢 and normal day to day living too!!!

But given that I do normally cope with stuff it might be it's that but she sent me to the hospital for quite a few bloods and xray on my hands !! I asked what for and she said she would like to investigate for RA as I'm showing all the signs of it!!

Boom, wasn't expecting that, I mean I probably have so much going on it's all caught up with body, but this has been going on since early November and I just can not get it out my system.

I like to keep a clean tidy home and it's just not happening, its so much effort, I've noticed I've started to drop the dog lead and dont even feel it drop🤦‍♀️

I'm laying in bed now just worried, all my muscles really ache and I'm getting pain in hands feet with niggles in knees and shoulders, I mean please I just want to feel normal again, what ever that is!!

Please any advise, I know I should probably wait till results when she calls Friday but my minds wondering away as I don't know much about it

Please help!!!!

Thank you for reading

Xx

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Crazyfamily profile image
Crazyfamily
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26 Replies
K3-2 profile image
K3-2

Hi there , sending a big long hug. 🤗🤗🤗

You’ve been through a lot and and managed very well. There’s nothing you can do until Friday....but you’ve found the most supportive and helpful community here. Though we can’t give medical advice but can share experiences and offer practical advice .

You are not alone ❤️

Crazyfamily profile image
Crazyfamily in reply to K3-2

Thank you for the hugs much needed 🌝

helixhelix profile image
helixhelix

All I can say is don’t worry, and DON’T GOOGLE! There’s a lot of rubbish out there on the net which will scare you witless. But the reality is that for the majority of people it is a manageable disease. If it’s been caught early, and you respond well to treatment then you may well like be be back to normal by the end of the year. (Or actually from what you sya, you may well feel miles better than you do now!).

Try to be patient, and fingers crossed that it’s something more temporary.

Crazyfamily profile image
Crazyfamily in reply to helixhelix

Thank you, not googling that much, I know you can write a small thing and then end up thinking your going to die buy the time you've finished browsing 🤣

Stayloose profile image
Stayloose

Just want to say I'm sorry you are going through such a tough time. Well done for telling the GP as it can be difficult to bring up something else. There's tons of love and helpful experience on this site IF you need it when Friday comes, or at some later point. X

Crazyfamily profile image
Crazyfamily in reply to Stayloose

Thank you, I think this site is good when you feel like your going mad, for me i dont want to add more worries to my family and here people here understand weather you have the illness or not, just tapping and and getting advice helps🌝

People have given you some good advice here. Unfortunately our advice is minimal until you have a proper diagnosis.

Your story is so similar to mine it is uncanny. I too had a prolapsed womb and bladder had to have a hysterectomy and a mesh which I’ve had numerous failed operations on. I nursed my mother with throat cancer and was her main carer for11 years until she died of lung cancer.

Your GP is much more proactive than mine. I went to the Gp for many years with all off your symptoms and told I was depressed and made me feel like I was going insane. I was eventually diagnosed 4 years ago. Treatment initially worked and I had 3 good years. Things changed last year and I’m now starting to get back on my feet.Dr google will frighten the life out of you. There are so many success stories although it may take time.

Friday seems so far away . It’s very easy to say don’t worry so I won’t but I’m a believer in dealing with things when they happen but not before.

Please let us know how things go.

Good luck

Crazyfamily profile image
Crazyfamily

Omg, poor you, sorry for the loss of your mum.

I do have a great doctor shes been there for me through all my difficulties,

It tough trying to cope with it all even if you have good friends and family around you you can feel lonely,

It's just so annoying my head wants to do stuff and my body cant or struggles to do it, my whole body is really aching and I didn't do much yesterday 😤

Roll on Friday I hope it is just things catching up with me but also if I have something in bloods it will explain everything instead of me feeling rubbish for months and haven't imagined it!!

I let yous know what results are

Thank you

RosieA profile image
RosieA

Oh my goodness, what a lot of care and responsibility fall upon your shoulders. It is wonderful that you have such a good and responsive GP, a treasure. Worse case scenario, is that it is confirmed that you have RA. That said, many on this forum will testify that the treatments on offer are very good. It might take a little while for the treatment to work but once it does you have every chance of finding the old you. The NRAS advice line is an amazing service and you might find it greatly beneficial to give them a call. Their knowledge , advice and caring is exemplary. Wishing you all the very best and do let us know what happens on Friday.

janmary profile image
janmary

Feeling for you . Hang on in there , and hang on to that GP - shes a rarity, whatever happens on Friday.

-Mii profile image
-Mii

Even if it is RA there is Hope! As I , like you , was in a bad way and now with new drug Rituximab I am feeling totally normal again! In strength, hands , feet, Please don’t despair there’s hope yet! X

It is irresponsible to give desperate people advice like this, which has not been scientifically researched. In fact, I think it is cruel to raise people's hopes groundlessly. The most you can legitimately say is that your mother found frozen wild blueberries and celery juice helpful. RA is an autoimmune disease. Was your mother diagnosed with it? There are forms of arthritis that are caused by viruses, but RA is not one of them.

in reply to

I agree very irresponsible. No proof viruses cause this disease. My grandma had this disease (70 years ago) I think they may have found a connection by now

nomoreheels profile image
nomoreheels

Hiya Crazyfamily, welcome to us here at HU NRAS. You’ve received sensible advice from those of us living with RD, I've little to add except I do hope you're ok whatever Friday brings. You sound sensible enough not to heed the recommendations of the last but two reply, there's plenty of proper advice & we'll happily regale our experiences should you find you need them. My fingers are crossed that it is stress related but don't hesitate to come back to us if need be.

Until then you could try either heat or cold on your worst affected joints to see if that bring some relief & I’m sure your GP, who sounds on the ball, will be able to prescribe something for the interim if necessary. Try to take a little more care of you & rest up when possible, even though it does as though you have plenty going on please don't forget you. 😊

Crazyfamily profile image
Crazyfamily in reply to nomoreheels

Hi nomoreheels, I am going to be waiting for doctors results and advice!! I came on here just to get it all off my chest as I have a very busy house and thought there might be people who can relate, just the not knowing and waiting is hard, I just want answers to why I feel like this😢 and if it is ra I know I I have a reason and can deal with it, cause if it's just stress related that's hard to deal with as it's like you can get past!! Helping your self look after yourself but with my life that's so hard to do, seriously, the only peace for myself is walking the dog !! And then I walk back in the house to it again 😤

Just roll on Friday!!!

Thank you for taking time to read and reply

Xx

nomoreheels profile image
nomoreheels in reply to Crazyfamily

I think that's sensible & I'm pleased you found us to discuss your concerns, it's a safe place to do so. The unknown is a real issue & can have a dramatic affect on your life as you are finding. But, Friday thankfully isn’t far away so hopefully you'll have the answers you need. Without knowing what you're dealing with the stress levels rise, not good if you are diagnosed so you'll need help at home to reduce them. It's a big ask I appreciate with your particular circumstances but even walking the dog can reduce those stress levels.

Please keep us updated, we as a group will be concerned for you until then.

Mmrr profile image
Mmrr in reply to Crazyfamily

Best wishes for Friday, do let us know how you get on ?

Mmrr profile image
Mmrr

Your mum sounds 1 in a million who go into spontaneous remission.

Or perhaps she was misdiagnosed.

But drinking vegetable juice did not cure her RD and RD is an autoimmune disease , not a virus based infection.

Crazyfamily profile image
Crazyfamily

Hi there, well done on your mum finding a natural way of helping her pains, my mum has had cancer for years, terminal no cure, we tried her on green diet, cannabis oil, but what is keeping her alive is her positive think and treatment every 3 weeks,

I do believe what you put into your body shows different results as I tell my children when they want to eat junk food and chocolate, but we do need help with medication too! It has been saving people's lives for years,

So I think a mixture of the both help

nomoreheels profile image
nomoreheels

Was it a doctor or Rheumatologist who told her she had RD? There is no hard evidence that RD is caused by a virus! Without having some further info such as her inflammation levels & advice at diagnosis & current ones to compare it's impossible to understand if her diagnosis was mild or otherwise, or even if she was misdiagnosed. Osteoarthritis may respond better to pain relief, which you are purporting celery juice & wild berries is providing, that would make more sense to me. We don't doubt the forces of nature, most meds are derived from plants but you can't state that juices have rid her of the disease. We can't challenge her pain status as we're unable to see the evidence, we certainly can't accept as true that she no longer has the disease. What is she doing to protect her joints? Reducing pain is great, those of us with the disease could do that with corticosteroids alone but neither they or juicing means that she no longer has this insidious disease, sorry. It could be that she's fortunate & one of the relatively few who's achieved remission or who's disease has simply burnt out, it happens, very rarely. As it is she's not protecting her joints from damage, in fact she's not treating the disease at all, not good in someone more elderly because RD can affect all our vital organs, including the heart, lungs, liver & kidneys. This can often happen silently unless we have regular blood tests to keep track of any changes. I take it she,s not having any, or any other tests such as cardiovascular checks? Please don't recommend as you have elsewhere your sources, the "medical medium" who's books you've recommended, who's proud that he's not medically qualified, claims to be able to "read" conditions. He says he has the unique ability to converse with the Spirit of Compassion, who provides him with extraordinarily accurate health information that's far ahead of its time. What?! We as patients with the condition can't proffer medical advice but, indirectly, you are. His disclaimer on his Facebook page is telling. In short, he advises: His information is not a substitute for medical information or advice. You should never disregard medical advice based on his writing. He is not a medical doctor or healthcare professional. You should speak with a medical doctor or healthcare professional before acting on any of his advice. I take it you did so on your Mother's behalf & this "treatment" was recommended?

nomoreheels profile image
nomoreheels

I'm sorry your Mother is scared, it can be a very scary experience but is there any reason you chose to ignore my questions?

Crazyfamily profile image
Crazyfamily

I didn't suggest your sources did say have green juice and cannabis oil, there are a lot of people out there who have say they have better options of treatment for illness, having family members who are battling cancer you look at all sources available to fight for your life, everyone each to there own choices!!

But to say it's not medication is not a life sentence is wrong as my mum says having terminal cancer IS like a life sentence and she fights every day to say alive and me I am grateful for the cancer research in medicine as it's been keeping my mum alive for 6 years this summer when they gave her 6-12 months to live👏👏 and 🤞it helps keep her alive for many more years to come.

nomoreheels profile image
nomoreheels

If you're not happy to answer my questions that's fine, who diagnosed her, her ESR/CRP levels etc, so no, you you haven't answered them all. You mention her doctor, if this a GP or PC or is it a Specialist? All I ask if is your Mother shows signs of joint involvement please don’t attempt continue to treat her, please ask her to seek proper medical help & advice.

You instruct very poorly people to read this medical medium's books on other HU sites. Fresh berries won't prevent heart failure, it's possible self help such as reducing salt intake can, eating healthily too but otherwise only medication can relieve symptoms or help prevent further damage, or surgery of course.

Crazyfamily profile image
Crazyfamily

What does how she spend her day or project shes working on have any relevance to do with her treatment 🤷‍♀️shes a 59 year old woman who is a great mum and great nan and she lives her life to the full !! Shes recently gave up her full time job as her cancer has taken its toll on her body now,

How ever people spend there day really has nothing to do with anybody, like I said before she gets up every day regardless of how shes feeling and battles through each day as they come , thanks to the help of hospital treatment and good mindfulness shes here to keep being a fantastic mum and nan and enjoying her life.

You have offered us a handful of anecdotes, but remember "the plural of anecdote is not data". Unless these "cures "can be replicated across a large number of patients whose initial conditions have been verified by specialists and as then having been cured by berries and juice, I think we had all better stick to our science-based medicine. People can add berries and celery juice if they wish. I can't see that doing any harm, but misleading people into expecting a cure from them almost certainly will do them harm.

Looking at facts is good, but a fact is not just what someone claims, it should be possible to verify it.

If your mother's RA has not changed, it may still be damaging her joints or internal organs, despite the reduction in pain. I am pleased her pain has eased. Perhaps if she is now a bit more upbeat she could consider taking the medications that have been proved to reduce the impact of RA on joints etc.

nomoreheels profile image
nomoreheels

But as she has Rheumatoid Disease/Arthritis you'd recall if she saw a Rheumatologist? I don't underestimate the power of any foods, I have what I believe to be a varied diet, I eat five fruits a day, veggies maybe 2 or 3 & sensible about all things. I just don't believe for me that my condition could be controlled without medication. As you have your beliefs so do I have mine.

Maybe I should have pointed you in the direction of this before now but anyways healthunlocked.com/nras/pos...

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