just need some encouragement - Hughes Syndrome A...

Hughes Syndrome APS Forum

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just need some encouragement

WendyWoo50 profile image
14 Replies

hi everyone I’ve not checked in for a while, to be honest it’s all getting too much. You may remember we lost our home to a fire 2:2:22 finally they have started working on it. We r still in the rental, which isn’t suitable for someone with disabilities. But it was the only one in the town furnished. I can’t move out of town I need my support network and GP.

I had covid for the second time over Christmas (first time was in April 22) the first time I went into a 6 week remission. No such luck this time.

I am still feeling so ill even though I was negative by new year. my legs are so painful. I hurt all over. I don’t know what to do with myself. I’ve been sat here crying my eyes out I don’t want to die I have lots to live for but I can’t enjoy anything. I am a fighter I fight and push to keep going but I don’t have the strength anymore.

I just needed someone to offload to who gets it. 24/7 pain is too much. Is this normal for other APS sufferers? I am always in a flare never have any rest bite. I need a break. What can I do?

14 Replies
KerryA profile image

So sorry to hear about your awful situation.

Do you have friends and family nearby?

Is there a volunteer bureau or a friendly church in your community which you could turn to for help and support?

Where do you live?

WendyWoo50 profile image
WendyWoo50 in reply to KerryA

thank you. I am lucky I do have friends and family nearby but so many I. R town have covid. We are just recovering from it ourselves. With everyone being isolated again it’s been hard.

I belong to a lovely church centre but not been well enough to go since Christmas.

Things will look better once I’m well enough to socialise again. X

lupus-support1 profile image

I am truly sorry to read about such distressing news. I would encourage you to find a support group near you.

I would also encourage you to see your GP and ask to speak with a counsellor, not because you have abnormal feelings, but because your situation is such that anyone would feel as you do. You came here knowing people will listen and that’s part of a counselor’s work.

Don’t be alone! We are here to listen!

With good wishes,


Greenmil3 profile image

Wendy I feel you I am in pain all over and have been referred to another Rheumatologist to see what is now affecting me it hits my bones joints and muscles so I can imagine how bad you must feel. I am a fighter too but I feel like it’s an existence not living. But Wendy we will both get through this and get out the other side . Keep the faith and get your Church group to come to you.

MaryF profile image

Nice that you are back on here, sorry that life dealt you a huge lemon or two. Do check in with any community support, your local council will tell you about the groups, or asking on social media groups local to your area. Do make sure your Vit D, Thyroid, Folate, Ferritin and in your B12 is ok, find out what your currently levels are as all this would make you feel a lot worse. I had a course of B12 injections after I had Covid, it made all the difference to me. MaryF

WendyWoo50 profile image
WendyWoo50 in reply to MaryF

Thank u. Yes we had a bowl of lemons! 🍋

I gave just had a serious of bloods today at my gp. I did pre pandemic have the tests u suggested and all except vit D (which is always low even after 2 weeks holiday in the sun I take 2 x as Adcal with D3 daily.) all others were smack bang mid range. I do wish I could have a B12 and feel a bit better but that’s one thing that’s fine!

Hope ur ok x

MaryF profile image
MaryFAdministrator in reply to WendyWoo50

If in your blood tests, folate is low and homocysteine is raised it can indicate B12 deficiency, levels are set very low in the UK. MaryF

Jillymo profile image

I am so sorry to hear you are feeling so awful.

You have been hit very hard what with the dreadful fire and now two bouts of covid. Be kind to yourself and get plenty of nutrition and vitamins going in to build yourself back up. I agree with Mary with regard to B12, if me I would get it checked.

Sending you warm gentle hugs. Xxx 🤗 😘

WendyWoo50 profile image
WendyWoo50 in reply to Jillymo

thank you for ur kind words. I’ve just had bloods done hope they did B12 x

GinaD profile image

I am so sorry to read this! I suffered from chronic pain for most of my life due to "Oh be quiet. You'll feel better" response I got after I fell at age 8 and broke my knee cap. At first I managed to repress the pain, but my compensatory gait as I grew up resulted in extreme arthritis on that knee plus opposite hip. The pain went from minimal to extreme. What I suffered most from was the night pain. I continued to hike and walk ( with a lot of limping) but what astonished me was that night pain. I described it as " Trolls no longer live inder bridges. They now live under beds and at night they crawl out and begin to chew on joints thus making it impossible to sleep." I finally had the knee replaced, my gait returned to what my physical therapist called " more normal" but which stressed that hip which I also replaced a couple of years later. And now, when others my age complain about being unable to sleep through the night, I sleep through the night like a log! I walk 5 miles a day and taking those walks never gets old as I walk with no pain. I'm healthier at age 67 then I was age 27. But I totally relate to being unable to relate to people who can not understand what living with chronic pain is really like. The future for you awaits. And this site is here for support! And we all support you! Private message me if you wish if you want more one on one chats. Take care. Your posts have gifted me so much!

WendyWoo50 profile image
WendyWoo50 in reply to GinaD

thank u for ur kindness. How awful to have suffered so from 8 so young. I’m so pleased to hear what u have achieved since the ops.

one day when I was 11 I had a headache. That headache never ever went. Some days it’s 3/10 others 8/10 it has been 10/10 occasionally. Around the same time, my knees started to hurt. Mum n dad took me everywhere for answers although the two things were never connected. I think in hindsight, that is when sjogrens began. (Years later Lupus then Fibro and finally APS came along).

GinaD profile image

Yep. Sounds like sjorgens to me! I had " mono" 7 times within 14 years. No blood records survived but today's docs agree I was probably having lupus flairs. Medicine has come a long way in the past 40 years, and continues to improve. If we could only sprnd more research money and time on the root causes of chronic diseases, and less money on Big Pharma's attempt to create an expensive pill treatment for every symptom. I have been following new recent research on Alzheimer's: the latest pill approved for use here in The States might buy you 3months before moving into a nursing home. Whereas, eating healthy diet, exerciding, remedying nutrient deficiencies and identifying and eliminating heavy metal and mold buildup might even reverse cognitive impairment.

WendyWoo50 profile image
WendyWoo50 in reply to GinaD

yes that makes sense! X

Annslack profile image

So sorry to hear that you have had such a stressful time. You have had so much to deal with. Huge upheaval and loss , all made worse by the limitations and isolation that often come when these illnesses flare. I was diagnosed in 2009 , since then, I have realised that stress makes everything worse. It has such profound effects on our physical system. We can do what we can to reduce it but sometimes, life really piles on the lemons!

I have had a similar but milder experience over the past few months and I am just starting to get out and socialise again .

I was interested in the advice about vitamins. I had lapsed from regularly taking various supplements but I noticed that once I started again I had a real step up. I felt stronger about coping with the difficult situations we are dealing with.

In the uk we are all advised to take vit d over winter months. I think you will find that getting back on track with that will help.

Also anything you can do to counter the stress response will help you to recover and feel better. There are lots of great techniques on YouTube. Breathing techniques and vagus nerve stimulation are worth a look. There is research going on testing simple short exercises that dont require effort and concentration that you dont have when you are ill and overwhelmed.

I do understand how how awful and miserable it is when you are not able to do the things that keep you well. I had covid over Christmas and was coughing so much I couldn't have a conversation.

It was a really positive thing to do to reach out to this group, so many kind , wise and well informed people to help.

Take good care of yourself as best you can. I hope you soon find yourself feeling better and able to build up again.


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