Julia R

[stratobuddy]

My symptoms began well before the first wave.

People had started dying of covid, but it was long before the lockdown, there were no restrictions of activities, and no-one was wearing masks. So I was shopping a few times a week. and in particular, using buses regularly.

I had NONE of the classic symptoms, but started to develop severe muscle aches, which started in my legs and over a few weeks spread to my whole body. I also lost a lot of strength eg I had to use 2 hands to lift a kettle, and I was losing weight.

Walking was difficult, especially going up the stairs, and had great difficulty getting out of the bath. I also had "shaking shivers" and a rash. All these symptoms are now recognised.

Needless to say, I couldn't get a test until about 2 months later, when it was too late to show covid anyway.

The aches gradually subsided, starting from the legs again. But I think I was affected for about 8 months. I am now about 95% back to where I was, but still have a rash and shivery shakes now and again, where I feel very cold, even when the room temp is 21 deg or more.

I've recently had the Pfizer vaccine, with no side effects at all.

 

[Suki 1]

It's put better in the other Julia thread - the Valentine's one - and I think it's around post number 67.
It was what Julia said when Carla said she'd been cooking.
Given that Carla has recently lost her mother, who Carla was very close to, lived with, and cared for... it was a cutting remark, when a supportive one would have been more appropriate, imo.

Thanks maymorgan have read it now that comment was unnecessary

 

[csi]

I remember when a friend of Marie Francoise had just had a baby who was called Luna. Julia made a comment about the baby’s name. I think it was something like “some parents just don’t think”. Whatever you thought of the name you just wouldn’t say anything.

I remember that very clearly Luna. Disgusting saying live on air

 

[loveallthingsitalian]

.yet they go mad reading out those names on the blinking monkeys

 

[Deleted member 21102]

One of which in 2010 was Luna (burgundy colour, apparently).

 

[alter ego]

The scooter has allowed me more freedom and I don’t mind using it. I have even bought a simple folding wheel chair from Argos. I don’t use it much but I like knowing that should I need it we have it in the boot. By the way, my husband drives me around now since I had to stop driving a few years ago.
I have mixed feelings about EMS. No problem with the wires when I am wearing trousers but not such a good look with a dress. I also need to have a belt to attach the control to when wearing a dress. At my next appointment I will discuss upgrading to a wireless version which does away with some of the wires. There is a charge for that I think.
Having moved to the Secondary Progressive stage they are going to take me off my disease modifying dugs, injecting Rebif 3 times a week because it does not help Secondary Progressive MS. I won’t miss that! Hate prednisalone and avoid it but have to take low dose antibiotics everyday, alternating between two types every 3 months.

I do try to stay positive and it’s important and it does make a difference. For obvious reasons I like shopping telly but some of the presenters really spoil it. Just looked up the Atto and there is Craig demonstrating it like it’s a toy and with that silly grin on his face.

Stay positive. There is so much research going on. We’ll get through it. Good luck.

I'd looked at the wireless version, too, but the physio wanted me to have mine a few years before she'd consider it as lots of people give it up within a few years. My friend who I think would benefit greatly from it won't consider it as he's convinced he won't put up with the pain. They'll have to pry mine out of my cold dead hands!

I don't wear mine around the house, though. I stick to a neoprene foot device (can't think of the name, sorry). I don't walk lots during 'house' days so it's not really worth it. I do have an ankle holster that I can use but I get a lot of pain from nerve damage there so usually clip it to my jeans belt loop with a caribiner. The ankle strap may be better if you wear a dress than having to wear a belt if you don't want to. I'm past caring what it looks like these days.

Do you mind me asking why you take antibiotics? I take them regularly for UTIs (when I can get them off the GP who doesn't like giving them despite the MS nurse writing to explain that my history of infection along with the kidney infections I've had means I do need them). I get mightily peed off when my sister breezily informs me she's just had a script for them for a sore throat! I have to fight for mine yet she gets them unnecessarily. She also drags my niece and her grandsons off for antibiotics every time they sniffle. I signed the antibiotic charter and understand what overuse is leading to. My sister reckons it's big pharma waiting until they can charge more for the next gen of them. I'm amazed she hasn't joined Q-Anon or become an anti-vaxxer.

Does Prednisolone give you energy or make you feel better? My mum felt instantly better on it apart from hating the weight gain. It made me feel so ill from the start I thought I had flu. Aches, truly awful all-over aches, far less energy than the lack of it I already have.

I'm going to look into a folding chair for the boot now. It's time I stopped making excuses and got ready to resume life when life resumes.

 

[Toril]

Crikey, after reading these posts, I’m so thankful that I’m in such rude health. The only issue I have is an underactive thyroid and am on levothyroxin for it. My last blood test showed my levels to be back to normal.

Thankfully as well, I’ve stayed well since this dreadful pandemic started and had the first jab ten days ago with absolutely no side effects at all. The only real difference to my normal life (pre-Covid) is that I now have coffee with friends over FaceTime and I haven’t seen my partner of 18 years since last March, as we don’t live together, and his area has been in restrictions for months. Luckily we do speak most days. Both of us have said that the worse bit about the pandemic is that we can’t see each other (for the moment anyway) but at least we’re both fit and well.

My thoughts go out to all of you on here who are living with an illness or the effects of the virus.

 

[alter ego]

I’m sorry to hear you have MS, Evie. It is a cruel disease. My mother had it, and being a stubborn independent woman, she used to terrify us with the things she would do; and kept her independence until as late as possible. She defied the doctors, raged against her treacherous legs, and gave me the best example I could wish for of steely determination in the face of the challenges she faced on a daily basis. You sound cut from the same cloth

Sadly, she’s not the only one with this in my family. My only cousin on my mum’s side has it. One of my dad’s cousins also had it.

We had to complain though about one of the GPs who misdiagnosed mum. He had just written a prescription for Valium, rather than listen to her. Unfortunately that was in the days when women were dismissed as hysterical,and shoving tranquillisers at them was the normal response

Twilight, thank you for being an avenging angel, and support to your daughter and your pupils who have been targeted by bullies. I loathe bullies, and had the misfortune to be bullies twice. One by fellow pupils and later, and more horribly, by the deputy headmaster of my primary school. Fortunately, not only was I wholeheartedly supported by my parents and my gran, but my gran effectively replaced the school when I couldn’t face going in. She taught me a damn-sight better than the school did. I only saw this hateful man one time after I left that school, and enjoyed blanking him as he tried to smarm up to me and my dad. My dad blanked him too, and it gave me pleasure if it embarrassed him in front of his companions. It helped me to close the book on that part of my life. I am so sorry, May, that you had a traumatic reaction to encountering one of your bullies, but it’s totally understandable.

LIAM, I’m using the Zoe app too, and taking part in another survey being run by Imperial Healthcare Trust as well. In a situation where it’s easy to feel helpless, this helps me to feel I’m doing something which can help us see the back of this beastly virus.

I was diagnosed by a neuro in the early 90s but the GPs apparently missed that in my notes. I'd had weird symptoms and went completely blind in one eye for 6 months. I was told to go away and live my life as there was no treatment. Which I did. A decade later I started visiting the GP with more weird symptoms - relapses. I was told a variety of things like lose weight, exercise more. Then I was told I was depressed and given anti-depressants.Then came painkillers because, according to the GP I was in a circle of pain caused by depression that caused more pain. I KNEW it wasn't in my mind so we finally paid to see a neuro privately. She found my old notes, sent me for a MRI and re-confirmed the diagnosis I'd had in the early 90s - this was 2015.

Twilight's hit the nail on the head. GPs are, especially now, doing diddly squat. Not that mine were doing much before Covid but maybe that's just me. I paid to have a copy of my notes a few years ago. £40 well spent. I have at least three other people's notes mixed in with mine and MULTIPLE mistakes. I've asked about them being updated but was told no.

My friend has never been a big drinker, wedding toasts only and always drives. After taking methotrexate for a while she became ill. Her notes state that her liver is wrecked due to alcoholism when liver damage is a known side-effect of methotrexate.

If you have a few quid spare, ask for a copy of your notes and prepare to be shocked.

 

[alter ego]

My symptoms began well before the first wave.

People had started dying of covid, but it was long before the lockdown, there were no restrictions of activities, and no-one was wearing masks. So I was shopping a few times a week. and in particular, using buses regularly.

I had NONE of the classic symptoms, but started to develop severe muscle aches, which started in my legs and over a few weeks spread to my whole body. I also lost a lot of strength eg I had to use 2 hands to lift a kettle, and I was losing weight.

Walking was difficult, especially going up the stairs, and had great difficulty getting out of the bath. I also had "shaking shivers" and a rash. All these symptoms are now recognised.

Needless to say, I couldn't get a test until about 2 months later, when it was too late to show covid anyway.

The aches gradually subsided, starting from the legs again. But I think I was affected for about 8 months. I am now about 95% back to where I was, but still have a rash and shivery shakes now and again, where I feel very cold, even when the room temp is 21 deg or more.

I've recently had the Pfizer vaccine, with no side effects at all.

I've just read an article on Wired about Covid and how the mutations are especially likely in those who have the virus a long time. Not the same as having Long Covid but I'd have thought researchers would love to jump on people who've had symptoms like yours for a good while.

It might also have kicked something else off in your system so it might be worth asking for some blood tests. Mr AE gives blood regularly but has been refused a few times due to anaemia. This always makes him very fatigued and cold. I'm a chronic anaemic so feel like that all the time! It would definitely be worth thinking about some tests, Strato.

I'm glad you had no jab side effects. I had an incompetent 'nurse assistant' do my flu jab last year and my arm is still sore - after she'd squirted most of it over the floor.

 

[Twilight]

Crikey, after reading these posts, I’m so thankful that I’m in such rude health. The only issue I have is an underactive thyroid and am on levothyroxin for it. My last blood test showed my levels to be back to normal.

Thankfully as well, I’ve stayed well since this dreadful pandemic started and had the first jab ten days ago with absolutely no side effects at all. The only real difference to my normal life (pre-Covid) is that I now have coffee with friends over FaceTime and I haven’t seen my partner of 18 years since last March, as we don’t live together, and his area has been in restrictions for months. Luckily we do speak most days. Both of us have said that the worse bit about the pandemic is that we can’t see each other (for the moment anyway) but at least we’re both fit and well.

My thoughts go out to all of you on here who are living with an illness or the effects of the virus.

That is awful. However, it'll be an amazing date night...

 

[Anna]

Crikey, after reading these posts, I’m so thankful that I’m in such rude health. The only issue I have is an underactive thyroid and am on levothyroxin for it. My last blood test showed my levels to be back to normal.

Thankfully as well, I’ve stayed well since this dreadful pandemic started and had the first jab ten days ago with absolutely no side effects at all. The only real difference to my normal life (pre-Covid) is that I now have coffee with friends over FaceTime and I haven’t seen my partner of 18 years since last March, as we don’t live together, and his area has been in restrictions for months. Luckily we do speak most days. Both of us have said that the worse bit about the pandemic is that we can’t see each other (for the moment anyway) but at least we’re both fit and well.

My thoughts go out to all of you on here who are living with an illness or the effects of the virus.

Can I just ask Toril, did you have prickly skin before being diagnosed with an underactive thyroid. I am suffering badly at the moment with this on my lower legs and just above my knee and looking up the symptoms this is listed as one for underactive thyroid. It is driving me bananas. I am also very tired. I am going to have to ring my Doctor and hope I can get through to see if I can get a blood test.

I had the Astra Zeneca vaccine just over a week ago and had to go to bed the next day with tiredness, shivering, sore arm and feeling unwell. The next day I still felt tired and unwell, but slowly improved as the day went on. However, I have some motion sickness at the moment when I lie down in bed at night, so not too sure if that is the result of the vaccine or not.

 

[stratobuddy]

I've just read an article on Wired about Covid and how the mutations are especially likely in those who have the virus a long time. Not the same as having Long Covid but I'd have thought researchers would love to jump on people who've had symptoms like yours for a good while.

It might also have kicked something else off in your system so it might be worth asking for some blood tests. Mr AE gives blood regularly but has been refused a few times due to anaemia. This always makes him very fatigued and cold. I'm a chronic anaemic so feel like that all the time! It would definitely be worth thinking about some tests, Strato.

I'm glad you had no jab side effects. I had an incompetent 'nurse assistant' do my flu jab last year and my arm is still sore - after she'd squirted most of it over the floor.

I did have a lot of blood tests but they were all normal, so they didn't prove anything one way or the other.

 

[Toril]

Can I just ask Toril, did you have prickly skin before being diagnosed with an underactive thyroid. I am suffering badly at the moment with this on my lower legs and just above my knee and looking up the symptoms this is listed as one for underactive thyroid. It is driving me bananas. I am also very tired. I am going to have to ring my Doctor and hope I can get through to see if I can get a blood test.

I had the Astra Zeneca vaccine just over a week ago and had to go to bed the next day with tiredness, shivering, sore arm and feeling unwell. The next day I still felt tired and unwell, but slowly improved as the day went on. However, I have some motion sickness at the moment when I lie down in bed at night, so not too sure if that is the result of the vaccine or not.

To be honest, I didn’t even think there was something wrong. I put the tiredness (or as I told the doctor - the “I can’t be a**ed syndrome“) down to the fact that the adrenaline had stopped flowing when I retired. My diagnosis came after a routine blood test and then things started to slot into place. My skin had become dry, I did have bouts of itching and hives would appear on my arms or legs or no apparent reason, I needed more fibre in my diet (if you get what I mean ) and it became more difficult to lose weight. I started off on 25mg of Levothyroxin and had 3 monthly blood tests at the start so the levels could be monitored. I was eventually moved up to 75mg. I was due for a blood test when the first lockdown happened and, despite my ringing the doctors’ surgery several times, the receptionist said I couldn’t have one. After nine months, I was eventually told to go for one. My levels were dreadful and I’m now on 100mg, and the doctor did say that the nine month delay hadn’t helped. Within two months of the new dosage, my levels are now better than they’ve ever been.

If I were you, Anna, I’d ask to speak to the doctor and see if she will agree to a blood test because that is the only way to get a definite diagnosis. I’ve actually never felt unwell with it, barring the laziness, rather than proper tiredness, at the start.

I also know several people who had the Astra Zeneca jab and quite a few have had noticeable reactions to it like yours. One of my friends has felt absolutely dreadful for a week. The others have felt fine. I had the Pfizer one and the only side effect I had was a sore arm for about six hours. I guess if you have a reaction then you know that your body is busy making antibodies. I just hope that mine is as well.

I hope that you soon feel better and please let us/me know how you get on.

 

[shopperholic]

Can I just ask Toril, did you have prickly skin before being diagnosed with an underactive thyroid. I am suffering badly at the moment with this on my lower legs and just above my knee and looking up the symptoms this is listed as one for underactive thyroid. It is driving me bananas. I am also very tired. I am going to have to ring my Doctor and hope I can get through to see if I can get a blood test.

I had the Astra Zeneca vaccine just over a week ago and had to go to bed the next day with tiredness, shivering, sore arm and feeling unwell. The next day I still felt tired and unwell, but slowly improved as the day went on. However, I have some motion sickness at the moment when I lie down in bed at night, so not too sure if that is the result of the vaccine or not.

My symptom was tiredness, I’m a phlebotomist and at the time blood test forms were forms that you just ticked what blood test you want, so I got a blood test off the doctor and ticked thyroid myself because I’d forgotten to mention it to him, came back mine was under active, one tablet of thyroxine a day sorted that out. Ask for a blood test and you’ll find out. You get all your medications for free when your diagnosed with an under active thyroid.

 

[Evie]

I'd looked at the wireless version, too, but the physio wanted me to have mine a few years before she'd consider it as lots of people give it up within a few years. My friend who I think would benefit greatly from it won't consider it as he's convinced he won't put up with the pain. They'll have to pry mine out of my cold dead hands!

I don't wear mine around the house, though. I stick to a neoprene foot device (can't think of the name, sorry). I don't walk lots during 'house' days so it's not really worth it. I do have an ankle holster that I can use but I get a lot of pain from nerve damage there so usually clip it to my jeans belt loop with a caribiner. The ankle strap may be better if you wear a dress than having to wear a belt if you don't want to. I'm past caring what it looks like these days.

Do you mind me asking why you take antibiotics? I take them regularly for UTIs (when I can get them off the GP who doesn't like giving them despite the MS nurse writing to explain that my history of infection along with the kidney infections I've had means I do need them). I get mightily peed off when my sister breezily informs me she's just had a script for them for a sore throat! I have to fight for mine yet she gets them unnecessarily. She also drags my niece and her grandsons off for antibiotics every time they sniffle. I signed the antibiotic charter and understand what overuse is leading to. My sister reckons it's big pharma waiting until they can charge more for the next gen of them. I'm amazed she hasn't joined Q-Anon or become an anti-vaxxer.

Does Prednisolone give you energy or make you feel better? My mum felt instantly better on it apart from hating the weight gain. It made me feel so ill from the start I thought I had flu. Aches, truly awful all-over aches, far less energy than the lack of it I already have.

I'm going to look into a folding chair for the boot now. It's time I stopped making excuses and got ready to resume life when life resumes.

I'd looked at the wireless version, too, but the physio wanted me to have mine a few years before she'd consider it as lots of people give it up within a few years. My friend who I think would benefit greatly from it won't consider it as he's convinced he won't put up with the pain. They'll have to pry mine out of my cold dead hands!

I don't wear mine around the house, though. I stick to a neoprene foot device (can't think of the name, sorry). I don't walk lots during 'house' days so it's not really worth it. I do have an ankle holster that I can use but I get a lot of pain from nerve damage there so usually clip it to my jeans belt loop with a caribiner. The ankle strap may be better if you wear a dress than having to wear a belt if you don't want to. I'm past caring what it looks like these days.

Do you mind me asking why you take antibiotics? I take them regularly for UTIs (when I can get them off the GP who doesn't like giving them despite the MS nurse writing to explain that my history of infection along with the kidney infections I've had means I do need them). I get mightily peed off when my sister breezily informs me she's just had a script for them for a sore throat! I have to fight for mine yet she gets them unnecessarily. She also drags my niece and her grandsons off for antibiotics every time they sniffle. I signed the antibiotic charter and understand what overuse is leading to. My sister reckons it's big pharma waiting until they can charge more for the next gen of them. I'm amazed she hasn't joined Q-Anon or become an anti-vaxxer.

Does Prednisolone give you energy or make you feel better? My mum felt instantly better on it apart from hating the weight gain. It made me feel so ill from the start I thought I had flu. Aches, truly awful all-over aches, far less energy than the lack of it I already have.

I'm going to look into a folding chair for the boot now. It's time I stopped making excuses and got ready to resume life when life resumes.

I have just read your post alter, sorry I didn’t get back to you earlier. Like you, I don’t use the EMS around the house. Prednisalone was offered to me for flare ups. In the beginning it really dealt with the inflammation but less so with time. It gave me so much energy and it was impossible to sleep. There was also the issue of weight gain. The antibiotics are essential for me because MS can cause constant UTIs. Each infection caused a new MS flare up. In my case all the pros and cons were weighted up and alternating between low dose antibiotics was the only way forward. I know it’s not the best thing but it has helped me a great deal.
Knowing you have a folding chair in the boot is very reassuring. Sometimes I just say, that’s enough I want the wheel chair now! I am now look for every way that will make things easier. As I have said the lift is our next project and my grandchildren can’t wait to have a new toy!

 

[Anna]

To be honest, I didn’t even think there was something wrong. I put the tiredness (or as I told the doctor - the “I can’t be a**ed syndrome“) down to the fact that the adrenaline had stopped flowing when I retired. My diagnosis came after a routine blood test and then things started to slot into place. My skin had become dry, I did have bouts of itching and hives would appear on my arms or legs or no apparent reason, I needed more fibre in my diet (if you get what I mean ) and it became more difficult to lose weight. I started off on 25mg of Levothyroxin and had 3 monthly blood tests at the start so the levels could be monitored. I was eventually moved up to 75mg. I was due for a blood test when the first lockdown happened and, despite my ringing the doctors’ surgery several times, the receptionist said I couldn’t have one. After nine months, I was eventually told to go for one. My levels were dreadful and I’m now on 100mg, and the doctor did say that the nine month delay hadn’t helped. Within two months of the new dosage, my levels are now better than they’ve ever been.

If I were you, Anna, I’d ask to speak to the doctor and see if she will agree to a blood test because that is the only way to get a definite diagnosis. I’ve actually never felt unwell with it, barring the laziness, rather than proper tiredness, at the start.

I also know several people who had the Astra Zeneca jab and quite a few have had noticeable reactions to it like yours. One of my friends has felt absolutely dreadful for a week. The others have felt fine. I had the Pfizer one and the only side effect I had was a sore arm for about six hours. I guess if you have a reaction then you know that your body is busy making antibodies. I just hope that mine is as well.

I hope that you soon feel better and please let us/me know how you get on.

Thanks for your reply. I suffer from hives now and then, but have for quite a while. I feel some days that everything is such an effort. I will try to get a phone consultation and ask for a blood test. I'm glad to hear you are so much better now but isn't it terrible that a simple thing like a blood test was not available for you when you needed it.

 

[Anna]

My symptom was tiredness, I’m a phlebotomist and at the time blood test forms were forms that you just ticked what blood test you want, so I got a blood test off the doctor and ticked thyroid myself because I’d forgotten to mention it to him, came back mine was under active, one tablet of thyroxine a day sorted that out. Ask for a blood test and you’ll find out. You get all your medications for free when your diagnosed with an under active thyroid.

Thank you Shopper. Hopefully a blood test will either rule it in or out for me. If it's not that I hope the doctor will have some ideas.

 

[maymorganlondon]

I've just read an article on Wired about Covid and how the mutations are especially likely in those who have the virus a long time. Not the same as having Long Covid but I'd have thought researchers would love to jump on people who've had symptoms like yours for a good while.

It might also have kicked something else off in your system so it might be worth asking for some blood tests. Mr AE gives blood regularly but has been refused a few times due to anaemia. This always makes him very fatigued and cold. I'm a chronic anaemic so feel like that all the time! It would definitely be worth thinking about some tests, Strato.

I'm glad you had no jab side effects. I had an incompetent 'nurse assistant' do my flu jab last year and my arm is still sore - after she'd squirted most of it over the floor.

Wow, this is exactly what my mum's first symptom of MS was. She never dodged out of the way when my brother was a jabby-fingered baby... so she would already have had her first symptoms in her early thirties. She wasn't correctly diagnosed for another 10 years, when the GP finally sent her to a neurologist privately at my dad's insistence.

***sorry if it's confusing, as I meant to reply to post #86***

 

[Loveinamist]

Can I just ask Toril, did you have prickly skin before being diagnosed with an underactive thyroid. I am suffering badly at the moment with this on my lower legs and just above my knee and looking up the symptoms this is listed as one for underactive thyroid. It is driving me bananas. I am also very tired. I am going to have to ring my Doctor and hope I can get through to see if I can get a blood test.

I had the Astra Zeneca vaccine just over a week ago and had to go to bed the next day with tiredness, shivering, sore arm and feeling unwell. The next day I still felt tired and unwell, but slowly improved as the day went on. However, I have some motion sickness at the moment when I lie down in bed at night, so not too sure if that is the result of the vaccine or not.

Itchy shins are a symptom of an underactive thyroid.

 

[Loveinamist]

Itchy and scaly skinned shins are symptoms of an underactive thyroid. Chronic thrush also because female hormones are totally messed up. Slow healing bee/wasp stings also that ooze plasma for days. There are over 200 symptoms of an underactive thyroid that include physical and mental. There are the classics, tiredness, weight gain (that no amount of dieting shifts until you are on thyroxine treatment and your appetite is suppressed anyway so weight gain is a kick in the teeth), dry hair and skin, period problems and brain fog, then on top of them the delights of a concoction out of the 200. Your symptom mix is unique to you. I recommend this book https://www.amazon.co.uk/dp/0722539428/?tag=shoppingcom03-21 which has a tick chart of symptoms you can fill in as a way of encouraging your doc to test you. The ideal would be for every person to have a test when well so that when/if things go off the medics can know what your personal healthy goal magic blood test “number“ is to bring you back to optimum health quicker. Unfortunately, thyroid patients are often kept undermedicated to prevent the speeding up of the heart, which frightens GP’s and therefore they have unhealthy, unhappy, borderline depressed mostly women on their books for decades. Anybody feel they are suffering fight your corner, it doesn’t help that different testing laboratories have different reference ranges for the all important TSH test. The colder the climate the country you live in the more thyroxine you will need so if you emigrate to a hotter you will need meds adjusted after a time there. Good luck.