Just been diagnosed

Hi Joe thank you for your lovely response. It all started with what they called a virus which led to quinsy. After being referred to the ENT at the hospital they decided to remove my tonsils due to the fact the quinsy wouldn't go. Antibiotics galour and months of being really poorly my tonsils were finally out. Brilliant I thought until 6 days later the Dr found I had sepsis. So after kissing death and a very long struggle to get back on my feet I spent more time at the Drs and being told it will take months to feel normal again. So I left it a few months and couldn't deal with things so went back. I actually thought I might be going through early menopause because of the night sweats and exhaustion.... if in doubt blame my hormones lol. I have had tests every week for months bloods, scans etc and according to my results I am really healthy and normal. No food allergies, no vitamin deficiency, no kidney or liver function issues etc. And that's when he said CFS. In a way I am relieved I finally have an answer and can now deal with it and after reading more about it I feel like I am more in control in a way. Has anyone else got a nose like a sniffer dog and gone off favourite foods and started eating stuff they never liked? Now I'm just rambling sorry so many questions lol

Just read about your battle with sepsis. A horrible and serious thing. Any wonder you are feeling so bad. Your body has gone through so much.

Yes I have a very strong sense of smell some days. Some days can't taste or smell at all . It is another common symptom .

Try to keep yourself hydrated. Drink plenty of water. We seem to dehydrate easily and that makes the fatigue even worse . The night sweats , another common symptom . X

Hi Janet. Because I had sepsis I have blamed that for everything. The pains, the sore throat from tonsil op, the sweats I thought was early menopause and I put the food and smells down to hormones. I've always had a bad back so I was blaming most of the pains on that or thinking I had slept funny. Not once had I considered cfs/me. It's like I can remember everything from years ago but not what someone just told me. Not sure that's a symptom or just me hitting 40 lol. Again thank you Janet x

You definitely have CFS/ME Ruthy . I was trying to say the infections you had then the full sepsis is what led to it. The cognitive issues are so frustrating aren't they . The shot short term memory , concentration etc. I completely empathize with you . Take care x

Hi Janet that's what my Dr thinks triggered it. I read somewhere about the immune system over acting which I'm sure was more than likely with everything and also not being able to eat for 9 days.

Janet is this a UK site or are people all over the world?

Also how have you coped with this for 21 years? You're one tough cookie... you may become one of my new heroes. Take care of yourself and thank you for all your help xx

It s UK based but some folks are in the usa .

I sometimes wonder how I have got through all these Years too. The last three have been incredibly difficult since moving from south of north. Never recovered really. Then my dear mother died. Surrounded negligence. I had three major complaints to make . I have spent the past two and a half years dealing with all that . Has been a nightmare. Almost done with now . I haven't been able to grieve properly so far. My mother was an amazing lady. Never complained , Heart of shining gold.

Thank you for your lovely words. Please feel free to private message me anytime . Take good care x

I'm in the UK. Doesn't matter where people are from I just wondered.

Aww Janet it's no wonder you are struggling as stress will make everything worse and set you back I'm sure. You do need to let yourself grieve but I understand why you haven't properly as yet. I hope you get the outcome you need and deserve and it comes quickly to allow you to grieve and start the healing process mentally and physically. In times like these I always believe someone will hold us up and give us the strength we need. I haven't done a healing list for some time now as I've not been well enough to but I shall send you some healing prayers and ask for some extra support for you.

Why do bad things always happen to good people ... bless you Janet stay strong lovely xx

Awe so kind of you . my friend does distant reiki too. She did loads for my car mia who died . and our other cat dexter completely transformed . his story is on her website. Sometime she wants me to write about mia . she did do a short article for an American magazine she was involved in for a year. Like me she is in UK. She has also written a book. Her aim is to set up holistic care centres for animals. She plans her first one next year .

I only wondered where you were because referrals etc are a bit different in the USA. And sometimes people ask or say things and they have different facilities etc .

Concentrate on yourself for now and don't worry about me. You are really thoughtful and kind . you do learn to be a bit selfish with this disease. I call it self preservation ! And it essential . it does seem that bad things often happen to good people doesn't it. Is lovely chatting to you . take care x

Ooh she sounds lovely what a fantastic friend to have. I wouldn't actually send like I used to I would just be asking for it to find it's way to you. Kind of like rather than me giving you a lift in my car if be ordering you a taxi lol.

Been lovely talking to you but I must try get to sleep now. Take care and speak to you soon lovely xx

Indeed . my eyes are boggled !

Hope you can rest well. Chat again soon. Take care x

I’ve never related to something so much .. I to blamed myself for doing too much and my back pain on ‘always being there’ ignored every symptom thinking it was me being over dramatic or my body taking its time to fight whatever’s virus it has concocted. I then went through blood tests repeatedly for months and had doctors tell me they we’re “worried” because they “can’t find anything wrong” with me .. (never nice to hear from a professional!) it was in fact my own research that even got them on the track of ME.. every year for the past four I’ve been tested for allergies and glandular fever.. this time was different. This time I would feel find an answer whether it killed me. I was studying at university, working 30 hours a week and painting the town red of a weekend .. figured it was no wonder I was so bloody tired all the time .. but at twenty? Twenty years old? Some days I couldn’t get out of bed.. and the less I ate the worse my symptoms became.. being ‘alone’ at university was terrifying I never felt so alone and so scared didn’t know what was going on and I had no family there’s to understand or support me. So I gave it up.. moved house, to be nearer to my family for those awful Dayan we’re all so familiar with .. and FINALLY a visiting doctor mentioned ME, I’m now being referred and waiting to hear about the next step. It’s so nice(burn so not) to hear someone has recently been diagnosed just like me .. it’s all so Very scary doing it alone - because nobody truly understand what you’re going through unless you’ve got it.  Hope you find what you’re after and feel less alone xx

Hi wknight and that's for your reply. I have read about pacing and wondered if it actually worked. I don't want to give up work or my life as I am a social butterfly so I think I will try this. So basically if I work that day that's the only thing I do? And only go out on my days off? (I only work 30 hours a week so some shifts are only 4 hours) I seem to find that in one day I can go through absolute exhaustion where I am dizzy, sick and feel like I can't go on, to talking to myself saying you can do this and I have a ping of energy yet my eyes feel like i have rubbed vaseline in them and everyone then comments I look tired and should get to bed on a night. I have started keeping a diary of foods, how I feel etc to try find a pattern but any advice is more than welcome.

Hi agentdove and thank you. I need to be strict with myself. I've always been 100 mph and need to learn to just slow down and be kind to myself. I do meditate and have lots of crystals. I'm also an aromatherapist so I'm going to look into oils to try and help. I pop ibuprofen like Smarties and it's no good but they take the edge off the pain but avoiding stronger pain killers. Have you ever had any alternative therapies that have helped?

Be careful with ibuprofen Ruthy. It can irritate your stomach and cause problems. Personally I can't tolerate any painkillers so don't take them. The ME specialist may well put you on something else for pain like gabapentin. I am on that but it doesn't do anything for my nerve pain. Did put my severe migraine to rest though. Antidepressants are often given too for pain. The dose usually being smaller than when given for depression.

There are various non drug things that can help pain. Reiki , self relaxation techniques. Different things help different people. I constantly have a hot water bottle on my back for example. Helps with pain. X

Hi Ruthy

I do use copious amounts of lavender, be it bed sprays or essential oils. I also subscribe to head space (free taster) (look on android/apple store or pc) it is not cheep for the full version but the taster is good. It has really helped when things get bad with pain and guilt!

I also have regular sports massage and my masseur is very knowledgeable, again not cheep but works for me.

It really is just a case of getting in touch with your body and be willing to listen! What is good for me may not be right for you as we are all very much individuals in our own right.

I really do wish you the best as I know this is not an easy journey you are on. Please do get back to me if you have anything you would like to ask!!

xx

Hi Janet I try not to take them if I don't have to but I have terrible pain in my neck and shoulders that just won't shift at the moment so they are just taking the edge off. I always eat first though even if it's just a banana so at least they aren't going on an empty stomach. I am Reiki attuned so do a lot on myself since the sepsis but my auntie is coming to visit soon and she does alsorts of alternative therapies so I will let you know of anything helps. Im looking into a few different essential oils, I'm an aromatherapist so I will experiment and share my findings. I also make crystal bracelets for ailments and had great success with my friend who has fibromyalgia.... never thought I'd be making one for myself. I'm always the friend that makes people better x

Really good you have these alternative things to turn to. I have spondylosis in my neck. Get dreadful pain. Also like electric shocks down my arms and legs. I use the hot water bottle there too. Had a frozen shoulder for two years. which left some issues too.

It is the actual frequent use of nsaids like ibuprofen that can cause gastric problems . Even if you take them with food. Do you have any gastro reflux at all ? I have it . On omeprazole . But I have to take aspirin as I have atrial fibrillation . Another gastric irritant ! The omeprazole protects the stomach lining x

I have a friend who is a reiki master. All it ever does for me is relax me. It's amazing how she picks up where my pain is the worst on that occasion. She did amazing work with my cats ! Communicated with my poorly cat . Was truly heart rendering. X

Hi agentdove yeah lavender is one oil I always have it treats so many ailments but I'm just not a lover of the smell lol. I will try anything though. What is head space? I'll take a look.

My main issue at the moment is I need to talk about it. I've gone through the emotional crying, denial that the Dr must be wrong and he's going to ring and tell me I'm allergic to cheese or something (I know this isn't going to happen because I asked him this when he gave me the diagnosis and he showed me the test results for allergies and food intolerance and all fine) I've been pretty angry today at some people's reactions. I'm guessing this is part and parcel and you've been there and bought the t-shirt?

I've started a diary of foods drinks and ups and downs to try see of I'm most lively at certain times or after certain foods. This week I seem to be worse than ever with brain farts and just this absolute exhaustion to the point I could cry but maybe because I've been emotional finding out it's drained the life out of me.

Do you ever get the feeling like you've got Vaseline in your eyes and can't quite see. My eyes seem to go pretty blood shot when this happens and soreish. This is the point people tell me I look tired and to get to bed on a night. Is this something you've had? Xx

With you on the lavender smell ! Can't stand it .

My eyes feel really boggy at times. Sounds like your Vaseline description . Blurry at times too when totally wiped out. And stabbing pains in them x

Do you have any alternative therapies Janet? Maybe once I find something that works for me like a bracelet or oil I can send you a little thank you for your help prezzie. Or give you the recipe/Crystal combination.

I don't have any reflux but then again being such a foodie I very rarely part with anything from my stomach lol.

I'm not sure what spondylosis is so I shall Google it but sounds terrible xx

My reiki master actually had ME and fibromyalgia and I used to massage and blend oils for her. She unfortunately passed away from cancer a number of years ago but the day I got my diagnosis her ring that she gave me suddenly appeared. Was so upset that day I never thought anything of it but with you sending this message I have now got the message ... thank you Janet xx

Yeah mine are like that when I feel like I can't go on and I'm going to flop the eye thing is a very strange one. I'm glad I just have Vaseline and not your stabbing pains though that sounds awful xx

My pleasure to try and help Ruthy. I have several chunks of amethyst . Several bracelets too. Amethyst, turquoise., Rose quartz. Some crystal necklaces too.Have a set of different crystals in a purple pouch. I love purple ! And turquoise.

I do auto relaxtion sometimes. Tried a little pilates and yoga but as too much for me .x

How lovely her ring appeared . Hope it has given you some comfort. It is often the little things that help isn't it x

It's an inflammation type of arthritis in the cervical spine ....neck . also causes pain n shoulders and down arms . and can affect legs too. I have pain in legs but also have hip problems ! Trapped nerve . sciatica but also muscle and joint paint. X

All those are great for fibromyalgia and flourite is one I used for my friend too and also magnetite hematite seemed to help her. My friends ring is lapis lazuli I had to add that so maybe you should try it as she wore it all the time for her fibro xx

Wow Janet it's no wonder you're house bound lovely. Do you take glucosamine? It's very good for arthritic pain but you have to check with Dr if it's ok to take with current meds as some it doesn't agree with even though it's only a vitamin type supplement it's just better to check as you don't need issues taking it xx

No never taken it . my friend gives it to her cat though with some effect !

I used to be on mega hypoallergenic vitamins but found no improvement or good effects. And oral magnesium doesn't agree with me . I am not great tolerating meds too well either. Basically just take what I really have to . currently on vit d again. X

I used to have some lapis ear rings . my reiki friend gave me some aventurine . she believes in colour a lot. Gets up each day feeling which colour she will wear. I am similar some days. X

Ruth if talking is helping then chew our ears off!!

I am glad to say I do actualy enjoy the smell of lavender ... maybe that is why it is my go to smell!?

I did try Rakhi some years back but it did little for me.

I noticed you put that you are a giver and helper. It is sad to say that this illness (ME) defentitly seeks out the kinder hearts among us!

I attended a group a few years ago run by the hospital where we would learn how to manage our symptoms. I have to say the room was made up of teachers, nurses and care givers. Maybe it is not neurological at all and it is due to us all having such big hearts xx

Like you, I was diagnosed after a viral infection that wiped me out for 4 months. Sadly I have another neurological illness that sets my ME off, so trying to manage it most of the time is out of my hands. But I would deffinetly stick to the route of trying alternative approaches, rather than heading for the prescription stuff. I'm my opinion you will probably get more joy out of the alternate route xx

Also the brain high and vasaline eyes are definitely a ME symptom. Some days I feel as though I am getting early onset alzimers! It drives me crazy... but hey it is life.

As for the haters you will find them lurking in all sorts of places. My approach now it to not even bother trying with some of them...as it just wastes my energy...and as we all know we need to reserve that for things we like 😉

I do love my crystals Janet. May be me getting this illness is a way to steer me back to jewellery making. I'm a great believer in things happen for a reason. Colour therapy is a wonderful thing, usually how I'm dressed tells people what sort of day I'm having. Bright colours attract people and attention and people chat to you more where as today I'm in grey because I'd prefer the plumber wasn't here banging and clattering at 9am lol xx

One of my first main symptoms was the cognitive issues agentdove. And like you I thought I was getting early onset dementia . I would be losing conversations all the same and felt really embarrassed . even horse as time has gone on but I have learnt to deal with it. People who know me well as e used to it . and with new people I tend to warn them !

It really is helping agentdove thank you. I feel like I'm moaning when I talk to my friends which I'm not I just feel I need to talk and dissect it all at the moment.

The lavender for you is brilliant. It's too early for me to get my words right but you can train the brain into relaxing when you smell a certain smell. It's all to do with the olfactory system but I'm buggered if I can remember right now what it's called haha.

The truth is I'm happy when I'm helping someone. I've always gone out of my way to help other people and find it really hard to ask for or accept help. That in itself is going to be one of my biggest challenges.

My auntie is coming to visit just before Xmas and she does a therapy which the name escapes me but it's to do with tablets that you tape to certain parts of your body and she also does Reiki so I'm sure she will have a go at helping me out.

People are ignorant and if one more person tells me to get to bed on a night I may scream lol.

Maybe us that are helpers get this because we can handle it. I'm beginning to wonder if it's all part of a spiritual journey as so many are open to the alternative therapies, crystals etc. Xx

Is it the therapy with pebbles your auntie does Ruthy ?

Just take no notice of the uneducated ! They know not what they say ! And if they say well you don't look ill .Just say well you don't look like a doctor . or I like to say , to pointless suggestions, well thank you for your input professor .

I am the same wanting to help others. The caring nurse will be forever in me. No be can take that away. Not even ME. I won't let it .! X

Navy blue and brighter blue jumper today. I often wear purple though. And wear black a lot too.

Would be good to get back into your crafting. I make cards . well takes me a while . plus they are quite detailed. And being a perfectionist is a killer with this disease. I have had to compromise with myself and accept I cannot be as perfect as I would like ! X

Hi Janet no I don't think she does hot stone massage but she works with crystals but also something where she does something with little white tablets that you then have to tape to places on your body in a particular order and at certain times. I promise i will find out what it's called and let you know. I'm sure she does it online because I remember her sending orders out. Sorry I should know more but she's an 8 hour drive away lol.

I love the you don't look like a doctor one I may have to pinch that one haha you do make me laugh xx

I'm trying to do nothing today. I have my works Xmas doo tonight and then have an 8am shift tomorrow. The sensible in me would not go tonight but the stubborn git in me has decided that this was a plan I made before my diagnosis so one last reckless stint and deal with the repercussions later. It's like impending doom haha.

Yeah I will get back to making jewellery. At the moment I'm working and when I'm not at work I'm on the sofa. It usually takes me my 2 days off to be able to deal with the following week xx

My friends always tell me I don't listen to them. I do listen I just don't seem to take it in especially if I'm beyond tired or they fire too much info or ask me too many questions at once. I also can't multitask like I used to.

Do any of you start losing your voice and have a stupid cough like a slight cold all the time? Xx