Fibromyalgia Action UK

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Covid vaccine for underlying health conditions

I have a number of health conditions- far too many to be honest thank you but such is life. I am classed as disabled under PIP & have:- Fibromyalgia, Hyper mobile joints, Osteo arthritis, Anxiety & depression, IBS, Raynauds syndrome, Hemiplegic migraine, Sjorgens syndrome, Meibomian gland dysfunction, Prolapsed disc 5th lumbar, Dercums disease, Bulging vertabral discs L1 to S1, Spinal haemomangia, Hiatus hernia, Hypersensitive bladder.

Some of my conditions are neurological, others are auto immune issues, others inflammatory. I have approached my GP to ask if I can receive a covid vaccine as a person with ‘underlying health conditions’ in the Spring round of covid vaccinations as I have been told I don't qualify as being ‘clinically vulnerable’ but the guidance I have is that I will need to wait for my age group to be vaccinated- I am 55. I have only asked really as for the past 6months or so I have been struggling with bacterial & fungal infections as my immune system has not been great & this tends to be how I am now- I catch everything. I haven't been going out adopting my own ‘shielding’. In an attempt to avoid illness & I really don't want to be ill!!

Please can I ask if anyone with any of my conditions has managed to receive a covid vaccine because of their health conditions?

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61 Replies

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The JCvi criteria is based on mortality and from your list of conditions there would not be one that would elevate you up a group.

Ok, thank you for responding; I understand then if its based on risk of death.

Hi you will be lucky to find someone on here i would imagine I was going to mention ask your gp

But you have done that they could have put you there in group 6

I would have thought you would have been in the vulnerable group (6) too at least

Is there another gp to ask maybe

If not probaly be march

Thanks Ajay575 for responding, as long as I know its coming thats good news and I can see that its based on risk of death from the response I’ve had. Like you say March probably.

I had the pfizer jab 10 days ago have go go back mid April for second jab I think it because of Diabetes I am 2 years older than you

Thanks Mattjoachim, yes sure to be due to your diabetes; glad you’ve had the vaccination. Keep well.

I’m younger than you Deb ..got one booked in this Saturday ....I’ve got lung disease and fibro

Bless you- lung disease; understand why you’ve already had it & glad to know you have been vaccinated. Thank you for responding. You keep well.

You need to see if you can get your GP to see about getting you added to the Government list of people classed as Clinically Extremely Vulnerable. I had to do it cos I'm asthmatic & Type 2 Diabetic but didn't automatically get a letter. I have Fibro, Osteoarthritis IBS, Anxiety, Depression but It's my Asthma & Diabetes that makes me C.E.V. I had my 1st dose of the Covid vaccine on Sat cos I'm in the category of between 18-65 but C.E.V. Also this list goes to supermarkets who over priority delivery slots. In 1st lockdown I had emails from Tesco, Asda, Sainsburys & Iceland. Mainly shop at Iceland & they send you an email the day before (usually a Wed) saying priority slots available if you go on on Thurs. If no joy with your GP have a look at gov.uk/coronavirus see if any advice. Surprised if your GP doesn't help. Priority for Covid is supposed to be anyone who could end up seriously ill/hospitalised/fatal if they caught Covid. Try & push it with your GP. If you get nowhere with GP or gov.uk I don't know what else to suggest sorry. They have said that over 55's should be vaccinated by end of April but that doesn't help you if you're worried. BTW I understand bout you shielding/self-isolating, I've been the same since last March. Went out once before they introduced masks (I can't wear a mask cos it makes me hyperventilate which isn't good for my Asthma or Anxiety, I went out once in Aug had to wear a mask but only briefly & then was out on Sat to have vaccine & I am petrified of needles & having to wear a mask caused me to get so stressed out I hyperventilated so much I actually collapsed. So embarrassing. Hope you're able to have your vaccine soon

Thanks for responding; very glad to know you have had your vaccination & your advice is good; I appreciate it- you Keep well.

I'm 73, with all kinds of things, and I'm getting mine Thursday.

Ohh you poor soul you have so much to deal with at such a young age. Did you get the flu vaccination.

I have a few health issues myself from fibromyalgia, rheumatoid arthritis, epilepsy, migraines, depression, anxiety and quite a few others.

I didn’t get the flu vaccination at first because I didn’t have arthritis until a few years ago so wasn’t entitled to the flu vaccination until they realise that I could get it because I was staying at my mums at the time and she had cancer so I got it under those ground. I now get it under my own right because of the arthritis. As for the covid vaccination I haven’t had this yet and like a lot of people I am self shielding. My understanding is that I will get this soon because I have epilepsy.which is stated in number 6. I hopefully will get a letter with a date soon.

I feel people with fibromyalgia, arthritis, ms, asthma and many more such conditions that weaken the immune system should be entitled to the vaccinations such as the flu, covid and any other type of illnesses because there immune system is already quite weak and not as strong as other peoples might be.

I really hope you get your letter soon about getting your vaccination. I hope someone in your GP practice might realise that your immune system is weak enough without having to wait any longer especially with your medical history, good luck and take care l

Carole

I do get the flu vaccine but had difficulties as when I lived in England my GP was really knowledgeable of my conditions so always made sure I had it. When I returned home to Wales I seemed to slip off the radar! Didn't get a flu jab this year as I’ve been battling with too many infections so they couldn't give it to me. Thank you for responding; hope you are vaccinated really soon too.

The rules are different here in Wales too, I’d speak to your Doctor , good luck 👍.

They certainly are different. Live in Carers don't automatically get one out in Hywel Dda, and I wasn't called for a Flu jab either. I haven't seen my new doctors yet as I've only been here a year.

Will need to go soon.

Cheers, Midori

I had the vaccine 3 weeks ago I’m 54.

I have Fibromyalgia Spondylitis arthritis degenerative disc disease.

I am on the Extremely clinically vulnerable list but only because I take Methotrexate and biological therapies (injections) which are both immune suppressants.

I’m afraid although you have so many issues you do not come under the CEV list I’m sorry to say.

Hope you get yours soon.

Take care and stay safe.

Thanks for responding; good to hear you have had yours. Keep well.

I had mine last week. I am 2 years older than you and have Fibro, ME, Bi polar and newly diagnosed hereditary heart disease. My husband is having his this week with no underlying health issues and under 62. He is registered as my carer but goes out to work. We were both surprised to be called to have it so soon. But so glad to get it done.

Thats good that you are both getting yours. My hubby has had his as he’s an essential worker; which is good.

Thanks. Hope it won’t be long before you get yours too. 😘Take care x

Hi, I was told by the vaccination services that i fit into group 6, i told them about my fibro, thyroid and borderline personality disorder. It doesn't matter too much if it group 5 or 6 as they have decided to do these 2 groups together.

They have said letter to both groups start hitting door mats this week and within the next 4-6 weeks letter should arrive.

You could also contact your local vaccination center as they have been letting some people get it early if they have had a lot of no shows that day.

All the best

Thank you. Good advice. Hopefully will get a letter soon.

Hi, I have had the vaccine due to auto immune disease, I think it depends on the medication you take, this is what classes me as clinically extremely vulnerable. Hope this helps.

Thank you, that makes sense.

Have just had mine yesterday: Astra zenica. Only got fibromyalgia and have S.O.D.attacks and am 52. Husband also had his due to high blood pressure. However I live in Wolverhampton, one of the highest infection rate areas. Also our GPS seem particularly well organised. However also warn you 11 hours later, in mid of night woke with chills bad fluey aches, headache, and a previous pulled muscle on my shoulder blade was horrendous. It seemed to aggravate the fibro problems. Struggled to sleep even after taking 30mgcodeine with paracet. Only comfortable for back muscles by sleeping on the rhs, which then triggered a SOD attack (gives bad chest pain). Mostly gone this a.m. except pulled muscle is bad again, have headache and feel lightheaded.

By the way I am not saying don't have vaccine, only be prepared to suffer side effects and it might affect which vaccine you choose!

I don’t think you can choose which vaccine you have, it depends what they have.

We were given choice of Pfizer or astrazenica. Prob depends on area and gp.

Ah right, we didn’t go to our GP , went to a very large centre so its maybe that , we were told afterwards which one we’d been given, it’s all different in Wales anyway 👍

It's your body's Immune response reacting perfectly normally to the foreign proteins in the jab. It will settle down.

It seems quite a few people having the Oxford one are getting that. Same thing with me but after taking paracetamol and having a “little 😴 “ I was so much better. The only problem I have is my arm is still soo painful over a week later and feels like it’s burning. Probably the fibro making it feel like that but it’s done. Have heard from Drs that 2nd dose is worse. 😥

Thanks for responding, sorry to hear you haven't felt great; seems some people sail through it & some get side effects. Will definitely take my offer- side effects or not. Hope you feel better soon.

Sorry to hear about all your conditions. I also have many of the conditions you mention but also have long term MH problems. I have been invited to have my first vaccine in the next 2 weeks. Apparently they will text and offer dates and I am meant to accept and go along. Like you I am also 55. It is being offered in my little part of the UK as I have 'long term health conditions.' It's possibly related to how many people of the eligible age groups live in your area. Could you phone and ask for a more specific time range then at least you've got something to aim for rather than the not knowing, which causes havoc with anxiety. Hope you get sorted soon. Take care.

Hi i have qite alot too and an extensive allergy lost I had the oxford.amd.apart from.a headache and sore arm i was fine. I ckecked.it out with addenbrookes too.

I have an allergy problem and was glad that the one I have been offered is the Oxford AstraZenica one.

Hi I managed to get mine Saturday , i have fibro, Ra (non medicated) and other things, i phoned the NHS and got put on a "reserve' list and they called working 3 days. Doctors weren't much help to be honest ! I live with mum who is 82 and partner had bubbled with us and has lymphoma so I was panicking more for them. I had it Saturday, ended up in hospital Sunday for 3 hours with bad reaction, racing heart beat and really high temperature, after all tests and iv paracetamol, was good to go home. Apparently it happens a lot with the Oxford jab lol and like someone else on here made all present strains and aches in body tenfold in pain and still really achy and dizzy... was a necessary thing to do as still believe pros well outweigh the cons...but bot looking forward to the 2nd dose lol..

keep phoning until you get it sorted, there are a lot of vaccines going to waste each day unused and like me you may be lucky.

Fingers crossed for you x

Got mine today, as did my son, as my carer. Both Oxford AstraZenica, and the District Nurse said we were the first 'bleeders' she had seen!

Cheers, Midori

Hi had my first vaccine over a week ago. Am 54 but my asthma is the high steroid one so am clinically extremely vulnerable. Just because people have asthma does not automatically place them higher up. It’s based on the medication you take for that. Also type 2 diabetes is not in the clinically extremely vulnerable group, they are considered vulnerable. It’s only type 1 that’s higher up. It’s very frustrating to have to wait but the list is based on the people who are very high in the groups and could potentially die from COVID. Hopefully you’ll get yours soon. My husband is in the underlying 18-64 group and is waiting for his jab. Our particular surgery seem to be getting through the lists really quickly so we think he’ll be quite soon. Look after yourself and I know it’s difficult but please don’t worry ❤️

diabetes type 1 or 2 will not elevate priority but individuals circumstances including medication may. There is a small sub group of diabetes type one that have has islet transplants that will qualify but that is on their meds i.e. immunosuppressants.

List is here: gov.uk/government/publicati...

There is a lot of push and anxiety about getting the vaccine done and behind you but this is just the first wave and whatever the criteria there will be people that seem out of place. I am hopeful that the priority list will become a moot item soon like PPE is now. With Moderna coming on stream and the supply seem steady and a few others due soon then we will be in a better place.

I'm not keen on either Pfizer or Moderna, the Pfizer has been implicated in anyphilaxis, and both with Thrombocytopaenia.

"Officials with the Food and Drug Administration and the Centers for Disease Control and Prevention said that they were looking into the reports, but that so far, rates of the condition in vaccinated people did not appear higher than the rates normally found in the U.S. population, so the cases could be coincidental. Overall, the vaccines are considered safe. A small number of severe allergic reactions have been reported, but they are treatable, and the rates are in line with those reported for other vaccines, regulators say."

google.com/amp/s/www.nytime...

Could be, but having had an anyphilactoid episode many yeras ago, and remembering it in crystal clarity, I really don't fancy another! However, I have been told I will be getting the Oxford AstraZenica one.

Hi,

I have been offered the vaccine twice. I am 55 and have Fibromyalgia, arthritis, psoriasis, eczema, type 2 diabetes, anxiety/depression and acid reflux. So considering you have so many different underlying health conditions, I am surprised you haven't yet been offered the vaccine.

I have been offered it by the volunteer organisation because I work one-to-one with individuals and by my GP surgery.

With arthritis are you on DMARDs like methotrexate? As that would opt you in but perhaps the keyworker / one to one element promoted you.

Hi Desquinn,

Not sure what DMARDs are but am not on methotrexate-am on the usual co-codamol, Gabapentin, metformin etc. My GP surgery offered me the vaccine first then my volunteer job. My GPs are not particularly definitively treating my arthritis, as they just say use the co-codamol for any pain.

DMARDs are disease modifying anti-rheumatic drugs - used for rheumatoid arthritis (and some other autoimmune diseases). People taking DMARDs are considered vulnerable as these drugs dampen the immune system.

Thanks for that information LoneEra, very useful.

No longer on anything for arthritis no- developed hiatus so had to stop & have osteo not rheumatoid so don't qualify on that front.

Glad you have been offered. X

Hi @DistressedDebby. I have Fibro and probably CFS/ME (though waiting for a “formal” diagnosis of that one). I haven’t had an invite yet, but did ring the GP last week to ask that I be in Group 6 due to the two conditions,

as neurological conditions are on the JCVI guidance for G6. They said they would make sure my conditions were noted, but as for any invites that was out of their hands and down to Gov. Something I found interesting though was that during a work “Fatigue Network” zoom meeting a few weeks ago, Dr Sheppherd (who wrote the NICE guidance on CFS/ME), gave a presentation, and during the Q&A afterwards he said that in his view CFS/ME and probably FM, should be in G6, bring neurological conditions. And that he had been lobbying Gov/NHS/JCVI to ensure they were included, but so far hasn’t had a reply/decision. So it seems to me that they should be included in G6 - but as for if or when any invites happen, who knows. The period listed for G6 is Feb to April, so could be awhile. I know that in other groups, people have been given jabs quicker by ringing NHS or going to the vaccine booking website (when it is their groups turn of course), rather than waiting for their GP or someone to get in touch with them to book a date.

Interesting indeed, thank you for this.

Hi I have about 10 bad conditios including chronic illnesses, I had my vaccine 4 days ago without any reactions at all not even a sore arm. Hope this helps. Take care

News just in that an extra 1.7million have been added to the vulnerable list - I am crossing everything I can (carefully) that you may be one of them and therefore get your jab sooner.

bbc.co.uk/news/health-56086965

They are changing the criteria, so you might be in luck!bbc.co.uk/news/health-56086965

I was interested to hear this yes. Lets hope so!

I have a lot of health conditions too, Colitis, Type 2 diabetes, Underactive Thyroid, ME, Fibromyalgia, also had Renal Cell Carcinoma 2018 where they removed top half of my right kidney to name a few.I spoke to my GP last week who told me i am high risk and was surprised i have not been contacted but should be within next 2 weeks as our borough is a bit behind, still have not heard.

Other people in my area with just Type 2 diabetes and younger than me(am also 55) have been called for their Jab but are under doctors in different borough in my area (we are on edge of 2 london boroughs) so as far as we can make out it depends where your doctors is situated in a borough, as to how far ahead/behind.

I have been shielding since last March too and i have my cancer checks on Monday at hospital.

I just think we have to wait until we get called to be honest.

I do not want to get ill either but the worst thing for me is that we have only seen our son once since last March, he will not come here as is scared he may infect me.

I do completely understand your anxiety though as i cannot wait until i get my call from them.

Keep well 😊😊

Oh bless you- its so hard not seeing family isn’t it? I too cannot wait to be with my two daughters. These health conditions do seem to be interpreted differently all over the Uk. Good luck to you keep well. X

Good luck to you too x

Hi. I had my vaccination 2 weeks ago, I'm 52 years old. I have fibromyalgia and degenerative spinal condition. Try ringing your gp practice nurse and explain you conditions and ask again to be booked a place. My local town Bury is doing really well at vaccination and people in thier 30s with no health conditions are getting the vaccination.

Hi , I was phoned by my Doctors yesterday to say I was being offered the Vaccine.and to be there the next day. I have Hashimotos Hypothyroidism , Fibro and I was Epileptic ( seizure free for 12 years ) but I suppose it’s noted I was an epileptic. .. Hashimotos is an auto immune disease . You really should be on the list as vulnerable. Good luck. 👍

Hi I'm 62 I got covid jab last week due to illnesses I also have Asthma maybe that's why I got it but early .

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