Different Diagnosis: Hi everyone, so I... - Fibromyalgia Acti...

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Different Diagnosis

hannahjane1308 profile image
26 Replies

Hi everyone, so I've been to accupunture recently and I've had cupping and the needles and he said I have bad kidneys and a bad heart/lungs. I'm extremely worried as all my doctors have told me my kidneys and lungs are fine but my pain started after a kidney infection 2 years ago and I'm really worried that after abusing my tablets (Amitriptyline, Gabapentin) I've done some damage inside or they've missed something, but my doctors say it's fine?

I don't know who to believe and it's really stressing me out.

Please help, anyone

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Rosepetal60 profile image
Rosepetal60

This is traditional Chinese Acupuncture talk and NOT the same as in your organs of liver, kidney,lungs etc. Don't worry. It's just a total different way of treating your body as a whole and getting the energy of where it needs to be to help you and your body. The words you have been given do not relate to NHS terms. Try and relax and know you are being treated in a different way.

hannahjane1308 profile image
hannahjane1308 in reply to Rosepetal60

Okay thank you Rosepetal60, that makes me a little more calm

When you have acupuncture as the needles are removed they are said to tell tails! I believe this practitioner who claims to have found such detailed problems should write to your g.p and advise him/her without delay, ask for that to be done... It just might be the aftermath of the infection you had, kidneys repair after disease but not 100% and if you have over done your meds that will also show up on liver & kidney blood tests, none of our organs stay at 100% as we age they use up their life span BUT are still good for someone who has complete failure to have transplanted. Can you say why you felt the need to overdo the meds? Good old paracetamol added to your prescribed dose can always be a top up as long as you are not on anything else that contains paracetamol ingredients...There is always the our of hours services like 111 or whoever covers your g.p surgery when its closed; they will give good advise on using other pain relief if you are in real unbearable pain and failing that, A&E is always there, we are not put on this earth to suffer endlessly... Keep in touch hun..

hannahjane1308 profile image
hannahjane1308 in reply to

I didn't know I could ask for a scan but I will do, I've had my scans a few months before acupuncture so I'll ask for another one. When I first became in pain I took paracetamol, then ibuprofen, naproxen, cocodamol, codeine, then Amitriptyline and then gabapentin. I've abused them all as they stop working for me after I take them for a week or so. All my medication for pain doesn't work anymore as I've either used it too much or used too many, I go to pain management who prescribe me painkillers but they took me off gabapentin as it makes my heart beat fast and makes me really dizzy. The next one is pregabalin but they can't give me that till im 18 so I have to rotate cocodamol and a couple others but they only work for 10 mins at a time. I'd feel too silly ringing 111 or going to A&E.

in reply to hannahjane1308

Honey can I say to you-If you take too many pills one will work against the other and so you get No relief just a lot of side effects, gabapentin and pregabalin are for eplilepsy but have been found to take away pain after an episode and so more medics are now using them when conventional drugs fail, and YES they do make your heart race.. What is your pain hannahjane? Fibromyalgia? ME? or something else.I am very surprised your g.p will continue to prescribe you so many meds if you use them up so quickly, they are obviously not keeping an eye on things.Dont take codeine with cocodamol as the codeine is in the cocodamol. Have you ever been to a Rheumatologist or neurologist?

1Dog1Kid profile image
1Dog1Kid in reply to hannahjane1308

Hi sweetie I bet you are finding it really difficult to get pain relief of a useful strength just because you are under 18. It could also work for you as you have the right to be referred to a paediatrician. Instead of your Gp being very reluctant and maybe unknowledgable about medications for under 18,s you will have more of an expert. I know this as my surgery will not prescribe anything for my son until a paediatrician has prescribed first. He has two Genetic disorders,profound sleep problems and has had 6 heart operations. He of course doesn't echo any of us on this site but the Gp wouldn't even prescribe iron when discharged from hospital after a blood transfusion, simply because they hadn't written the dosage down. Mad hey. But insist on seeing a paediatrician and stress the urgency. If you are depressed,can't sleep,feel anxious they will prioritise you.

Good luck x

hannahjane1308 profile image
hannahjane1308 in reply to 1Dog1Kid

Yes definitely! I've been through all the painkillers I can have and now I have nothing, very stressful sometimes. I will definitely ask to be referred and I'm so so sorry to hear that! Thank you.

Al10 profile image
Al10 in reply to hannahjane1308

Hello Hannah Jane

Medication not working is part of the pattern of Fibro. Best to give it a wide berth unless it is being truely useful. They are just poisons after all. A fit preson wouldnt take then would they?

I suspect most of us have swallowed too much meds over the years with no benefit.

We know the ones we really cant touch anymore!

OK I'm gonna put my two penny worth in. Not interferring, but on account you say you are struggling with getting help on the medical pharmaceutical front.

Tummy not working and absorbing? Anti biotic use for Kidneys? First thing I would do, is sort out that tummy naturally with Probiotics. Good bacteria. Read up or pay a good therapist. You will be sick in your tummy at least, (and likely all over) untill you fix your gut biome. Bugs are not optional. Read up about it. Even Crohns sufferers are often seen to have a poor gut biome with children even recovering entirely using the dreadedly revolting sounding foecal implant!

When it is working, your tummy will start to feel better. Indigestion, cramping, the foods you can eat.

I'm a queasy sort. DnV as a kid, always feeling sick. Loads of anti biotics. Fibro onset early.

I love fruit n veg but got to the point I couldn't eat them.

I would struggle to afford to have every supplement or even source an organic diet which would be better for my Gut family but I'm doing my best. I always take my probiotics with each fruit and veg rich meal. It is helping. My tum is so so much better. I'm older so the rest of my healing is taking time. My stress is better though.

Crops sprays such as Glyphosate were designed to kill bugs not humans which should have been fine. Except that we humans are not alone. We are host a very necessary bug family. So now the worry is, is, sprayed food is stopping many of us naturally providing the right environment for building up our good bugs and allowing unhealthy bugs to proliferate.

Probiotics and fermented veg is the way forward. Growing our own? how I wish I could dig!

Our poorly tummies affects even our heads as we get depleted in the nutrients to feed and nurture our brains. If this happens we fail to deal with stress, anxiety and are more easlily depressed. We lose our resiliance. The B complex esp B12 is the classic vitamin that is hard to absorb for weakly tummies. B12 is essential for brain health. I take a subligual tablet to ensure I'm not too fatigued and my head is OK.

I don't believe swallowing poisons makes us healthier. Only good food, clean water, exercise, fresh air and sunshine will do that. And putting back what we lost. Our lovely gut bacteria family.

We humans live symbiotically with a myriad of different bugs. In our noses and lungs our skin, everywhere. It is a good thing. Each of them comunicating and helping to keep us healthy. You may like to look this up on the net? It's no longer crazy talk. I do hope you find something that helps you. I understand how trapped and desperate all this pain with no answers can make you feel.

hannahjane1308 profile image
hannahjane1308 in reply to Al10

Wow thank you so much for all the information! I've learned over time that the best way is natural in my opinion. I will def try some of that out! Thank you again.

hannahjane1308 profile image
hannahjane1308

Okay thank you, I didn't know that. I've just been taken off gabapentin as pain management said it was making my heart race and causing my swelling in my hands and feet. My rheumatologist said I have fibromyalgia but I also have malabsorption as I don't retain calories or vitamins. At my worst I was taking 6-8 gabapentin a day and they would give me at least 2 boxes at a time of it, so much more than I needed. I've been to both, I had a nervous scan at the neurologist a while ago but I'm pretty sure that was fine. I'm still with rheumatology and gastroenterology as it's an ongoing thing.

bluebell99 profile image
bluebell99

Hi hannahjane1308

I suggest you take a step back and really go over the way you feel right now. Are you breathless? Do you have a cough? Do you have smelly or cloudy urine or loin pain?

Sometimes we can be persuaded that we have something alarming because we haven't heard the full picture, just picked out odd words or sentences. Then of course we overthink and convince ourselves that we are almost at the point of a serious illness.

If your blood tests are normal and you feel quite well, (apart from fibro pains naturally) I really would not worry unnecessarily. Having a scan would reassure you of course and it is worth asking for one if the doctor agrees. But don't dwell on what might be until you have the evidence! :)

X

hannahjane1308 profile image
hannahjane1308 in reply to bluebell99

Yeah I think so too, I just have so many symptoms. I'm always breathless and dizzy. But yeah, I can tend to freak out sometimes. Thank you! X

rosewine profile image
rosewine

With Chinese acupuncture they talk about imbalances in the body which if you don't understand the explanation can cause you to think that there is something radically wrong. They believe that unbalanced can make pain worse and often work on trying to balance the body before even trying to help with the specific pain.

My Acupuncturist visited my friend and when he took her pulse asked if she felt okay as he said he was sensing a chest infection and she seemed to have a temperature She said she was fine her COPD was just as it normally was and she was okay. The same night she went down with an absolute corker of a chest infection.

If you have had scans and everything came out fine and you are no longer taking too many tablets I am sure you are fine.

Sometimes mixing too many tablets can make matters worse as you can start to have multiple side effects because of the mixture which might make it appear as though your fibro pains are worse. Tension can't help as it will make your muscles and joints more painful so try and relax. Has pain management suggested others means if dealing with the pain like cognitive therapy or hydrothereapy rather than more💊 as both can be helpful. Take care and do have a word with your GP if you are still worried.x

hannahjane1308 profile image
hannahjane1308 in reply to rosewine

Wow that's so interesting. Thank you so much for all the info. I've been to hydrotherapy but it's too hard for me, I also have malabsorption so its impossible for me to gain weight or retain calories, so I'm constantly dizzy and breathless. So I went to physio but my physiotherapist told me to go to hydrotherapy instead so I went there and it's just too hard, it makes me so faint. I haven't heard of cognitive therapy and I don't go to pain management often. I don't have a painkiller now as normal painkillers don't work anymore as I took too many and I can't move onto pregabalin until I'm 18. I think I will talk to my GP at my next appt and see what she says. Thank you again. X

rosewine profile image
rosewine in reply to hannahjane1308

It helps train your mind into another way of thinking about your pain and how you manage it and has worked for some forum members. Good luck.x

The Heart, Lungs, Liver and Kidneys are whats known as the bodys battery.

Do you smoke or have breathing problems ? You are very young to have all those show up on testing.

All the meds you have taken and possibly malnutrition may be the cause of them showing up " as bad " and even hereditary factors might play a part.

Look upon it as a good thing that you have this information now, because now you can do something to change it.

Try not to worry about it, try to think of it as now is the time to start taking good care of you're body.

Start with your diet, you need nutrition, you're body needs water, you cannot survive without it.

This may sound odd but you need to think of you're major organs as You're friends or like little babies that you feed and nuture and only give nothing but the best to, you need to love you're organs and you're body. You could try to picture each organ and ( sounds crazy i know ) tell it you love it and that you are going to take better care of it from now on.

You're kidneys need alot of flushing out, concentrate on getting those more balanced first, ie clear up any bladder or kidney infection first. The urether tube could be irritated and raw and need soothing and healing.

I realise my posts are a little different but thats because i am.

Hope you are soon on the healing path.

Sending lots of love you're way xx

hannahjane1308 profile image
hannahjane1308 in reply to

Thank you ever so much!! I completely understand you, I know your mind and the way you feel/think affects your whole body so I will definitely try to do more of that! I get breathless and dizzy a lot and I don't smoke cigarettes but I do smoke weed for the pain as I don't have another painkiller.

in reply to hannahjane1308

Hi, maybe you could gradually reduce the weed and find an alternative way rather than smoking it as i dont think the smoke is good for you.

Im no expert on weed but others here might have some experience and be able to give you some ideas on other methods for pain relief.

All pain relief does though is mask the problem. Keep going for the therapies to improve health and look upon it as a new start, a new life plan.

I feel sure you can get better, it will take months to achieve balance but small changes gradually are the way to go.

You need a different eating plan that soothes the gut, maybe ask some of the people who have intestinal problems what foods work for them as you really need the nutrients and drink plenty of filtered water.

get a filter jug and only use that to drink from, dont drink water straight from the tap.

Hope this helps a little bit.

you will get there, keep going xx

hannahjane1308 profile image
hannahjane1308 in reply to

Yes I would love to, but as it's the only thing that works as of now I can't use anything else. I will have a look at other options. Yeah I definitely agree. I am going to hydrotherapy and I've been told I might have a lactose intolerance so I don't eat cheese or eggs and I also don't drink milk so hopefully that's helping a bit. All I drink is water so I will definitely get a filter jug. Thank you.

Al10 profile image
Al10 in reply to hannahjane1308

I have read the Cannabis patch is on it's way. A drug that has been proven to be helpful for fibro, Hurrah!! Also helping Diabetic nueropathy so likely it will be really helpful for us as many have both 'normal' pain and nerve pain. Worth asking your GP what he knows? Hopefully NICE will approve?

hannahjane1308 profile image
hannahjane1308 in reply to Al10

Wow I've never heard of it. I will have a look! I will def have a look into it and speak to my doctor about it.

TheAuthor profile image
TheAuthor

Hi hannahjane1308

I really am so genuinely sorry to read this my friend, and I would talk to your doctor about your concerns, as they are more than likely connected to your malabsorption? If malabsorption is not treated then it can lead to malnutrition, and this in itself would show signs of problems with your internal organs. The main treatment is to follow a Gluten free diet, have you been advised to do this?

I have pasted you a link below to the NHS Choices cache on this issue:

nhs.uk/Conditions/Coeliac-d...

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

hannahjane1308 profile image
hannahjane1308 in reply to TheAuthor

Yes, my main place is gastroenterology now. They're trying to work out why I can't retain Cals or vitamins. I had an endoscopy and they said I wasn't intolerant to coeliac but I have a dairy intolerance.. I will have a look though, thank you!

TheAuthor profile image
TheAuthor in reply to hannahjane1308

Good luck my friend.

Natura profile image
Natura

Hi Hannah....try not to panic. Maybe damaged, but not gone. I found out I have scarred kidneys accidentally from a sono that I was getting done looking for gallstones. My GP said just because the report says they are both scarred, doesnt mean they are. (Really?)

I believe many drs really dont understand inflammatory disease.

I look at my bloodwork..if I find numbers close to out of range, i look at those.

I have been wanting to go to an accupuncturist too. I believe we may be born with these problems, and have had all our lives. As I mentioned in another spot, I use to eat a lot of beets when I was a child. I still think I dont have a great liver (beets help liver heal), though my dr did a sono and said everything is fine. For some reason, drs are still on the belief that if it looks ok in a sono externally, it must be functioning ok. I dont agree. And I continue to eat beets daily , and other liver healing foods.

Try to Pay attention to how you feel, and be proactive for your own health.

Question, find answers? You know your body better than anyone else.

hannahjane1308 profile image
hannahjane1308 in reply to Natura

Wow really? That makes me feel loads better.. Yes I agree we are all born with different strengths and weaknesses. Yes totally, I'm a little sick of doctors telling me how I feel. Thank you.

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