I know you fellow sufferers out there understand so I’m just venting as I feel NO ONE else truly ‘gets it’
For anyone that hasn’t seen my previous posts....
I was diagnosed last August and have been very well looked after by the hospital. With a complication of my neutrophils (infection fighting cells) I had a bone marrow biopsy scans etc, only to find nothing sinister PHEW!!!
I was finally put on MTX/hydroxy combo which worked worked well for me and I was almost symptom free. However it made my already low neutrophil level much lower so was taken off it at the end of Nov.
Since then I’ve been on nothing and was relative ok until a few weeks ago. My Rheumatology appt was on 13th and a couple of weeks before that my symptoms started and by the time I saw my Rheumy Dr my fingers on one had had frozen in a claw, I had no knuckles on either hand due to swelling and my shoulders hurt. I was given a steroid injection and told I was going on Biologics (Etanercept) but the have you apply for funding.
Every day a different bit of me hurts, this morning I just cried all I want is one night of uninterrupted sleep without calling out in pain to just turn over.
I’m a self employed hairdresser and am struggling to work and losing clients on a daily basis. I feel they are jumping a sinking ship.
I know it takes a few weeks for the funding/injections but I just don’t know what to do.
Sorry for long post I just needed a vent and my partner just doesn’t understand 😟😔😢
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Longlocks
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So sorry to hear about your pain. I can’t imagine how hard being a hairdresser must be with rheumatoid joints. And I think that it is really hard for other people to understand.
Could you ring your rheum team to ask for advice?
Have you tried wearing compression gloves? I find them really helpful in keeping swelling down and keeping my hands mobile when they’re flaring. Hope you get some relief soon
Poor you . It took 6 weeks for my funding then 4 weeks to set up with my home care to deliver. I would contact your clinic they may be able to help . I can’t help with your other half🙄🙄I’m lucky my other half is brilliant.
This is the perfect place to vent . Please contact your clinic don’t continue to suffer x
Like others say, don’t suffer in silence. Talk to your clinic and ask for help - a short term course of steroids, stronger anti-inflammatories, anything to help you through this. And keep politely nagging to get things moving.
And donkt forget the non- medical approaches heat and ice, wax baths, and so on. Can be soothing if nothing else.
Hi Longlocks - don't despair, this is just the battle you will win the war of RD. Similar journey I was in the trenches with nothing working - 8 biologics failing due to low neutrophils at 0.3 - I was getting desperate, saw a private haematologist who did my bone marrow, the aim was to find a top-up medication that would work with a biologic to help my low neutrophil count.
I was in such pain, couldn't walk at all. Fast forward to now - and things are so much better from where I was. It took time for sure, but you shall get better when they find the best cocktail for you.
Try not to stress or get too low, I know how hard that can be - stress caused me more pain. In between I took pain relief and bought myself a glitzy cane too, but didn't want to rely on it. I took lots of lotions and potions to help.
I look back and now don't take anything for granted. I thought I would never be able to walk at pace again as I can't run as before - last week I ran albeit slowly for my train yeah! I teared up when my daughter exclaimed ”mum look you are running!” that was a great feel. Hang in there ☺️
Awww Shalf - seriously as most as most of us here can relate to those dark miserable days when you think my goodness what's my body doing to me and you are out of control - there is hope we are such warriors we dig deep and just find it dont we. I always pray for everyone on this community. Hope all is good in your space ☺️xxx
Crazy and frustrating! I said to the nurse jokingly when I came off the scales that I'm not eating at all now! She replied, ' don't do that, it will make you fatter' 😳😂
Can I ask shalf why It is okay for Hessie to tell someone that they shall get better when the other day you berated me for saying they will feel better ?
Hi Kitty, You seem quite sensitive about a few days ago on a previous post. Berated you is a bit ott I think.
Hessie has clearly said 'when they find the best cocktail for you'.
I apologise for clearly upsetting you.
I just felt your words were almost guaranteeing the member that once on any med you will feel much better. That evidently isn't true for alot of us. It takes time and as I said before, hope is all we can wish for.
Agreed Shalf, it is been nearly 4 years now November 2016 diagnosed, this is a marathon for some not a sprint, as said 8 biologics - and I am still gently and slowly healing, not 100% but can thrive where I am currently. Meds never guarantee anything, RD still lurks profusely in my hands and right arm despite being on a bio.
6 for me Hessie. I think newly diagnosed need to be very aware that we are on a journey regarding meds otherwise they could become very disappointed if the first treatment fails.
Keep smiling ( and running for that train) lovely lady!
Your last sentence reminds me of my mum who was diagnosed young with RD and OA. As a child we used to smile on the occasions she would run and it's made me feel quite emotional reading about you running, when I think she tried her hardest to keep riding her bike too. So hold onto that lovely feeling Hessie x
Pippy25 I certainly shall do - emotional in a good way, it shows how we have come so far when we sometimes think the impossible it really can be possible. I can run maybe not as before but I can live with that ☺️ Blessings alway x
Thank you. Luckily my feet/legs are the only pain free part of my body (maybe I shouldn’t speak too soon) it’s my hands/elbows/shoulders I can’t move. My neutrophil was also 0.3, I know they will find a solution but this has just knocked me for six both physically and mentally. I’m 53 and never been ill in my life, bar the tonsillectomy and wisdom teeth. I’m sooo worried about being able to pay my bills if I can’t work I think that’s what’s causing the stress xx
Just a thought have you applied for PIP? Again might be worth having CAB or similar to check if you may be entitled to anything financially to help your situation.
Give Pip ago your day to day living is so impacted. It’s trial and error as others say it could be sometime before your back on your feet. Some people are lucky and things work quickly for others it takes time and sometimes it stop and start.As you stress is a big problem and as your worried about money it might help it’s not a lot but it effects give you a little help.
Some really good replies, I used compression gloves and at the time they really helped with the swelling. I have other problems now which means I can't wear them at the moment. Vent away as here you know there are people who sadly do understand and will support you. Sending you some warm wishes, take care
The first pair I had were issued by occupational health and they were full gloves which I wore mainly at night. I also found three quarter ones helpful during the day time (like fingerless gloves). They seemed to have more of a range now a days of styles, colours and price. As initially mine were quite pricey. I'm not at home at the mo so don't have a brand to be able to say, but do you have an occupational therapist as they may be able to recommend. It may be worth asking to be referred to one if not as they may be able to help or suggest things which may help you and any gadgets perhaps to help you with your job. Another thing which helped me was wax hand therapy which gave me some relief for a few hours at a time. Again I got this initially through Occupational health, I know it doesn't benefit all but it may be worth a try. Good Luck
Iget fingerless ones from Amazon (haven’t found them anywhere else) - I like the disuppo brand. Couldn’t manage without some days - good for support when using hands and to reduce swelling and stiffness overnight.
I sound like a sales rep I know - Im not, just glad I found them
Uncontrolled RA/RD can have a huge impact on our lives. Every daily activity and chore comes into it and the struggles to work is stressful. Put aside in your mind anyone who isn't prepared to understand your situation and focus on yourself. None of us need additional pressure trying to justify how we feel to others. There are things your Rheumy can do to help at this time. Contact them direct or via your GP.
You’re having a rotten time and it’s really tough. You need more help.
Your GP can refer you to Occupational Therapy who can provide equipment which will make your life easier. My Rheumy referred me to Hand Therapy who provided compression gloves and splints and made me a custom built support to rest my hand in which helped too. I bought more compression gloves from Amazon.
I found wearing gloves at night to sleep in helped to ease pain and stop me clenching hand with pain.
I do hope you get your biologic soon. Keep pushing your Rheumy department for help and tell them how much it is affecting your ability to work. If you’re not on Prednisolone and it’s not contraindicated for your other ailments then ask for it as a short term med until the Etanercept kicks in for you. Don’t suffer in silence, make more noise!!
Oh poor you I hope you get the biologics quick. I am on humira and honestly it worked immediately. Can you up your pain relief meds I know they dont really work too much but sometimes it takes the edge off.
Hi Longlocks. I know how you feel about your hands. Mine were like that when I was diagnosed. They were not claw-like but you couldn't see any of my knuckles as my hands were so badly swollen. When I had the ultrasound, my Rheumy doctor looked at my husband and said that he had never seen anything like it. I was in extreme pain turning over in bed at night also and was unable to sleep hardly at all. I couldn't turn the taps on the bathroom sink and my husband had to change the heads for lever taps. I also couldn't lift the small latch on our bathroom door etc etc. I was luckier than you though because at that time, it wasn't anywhere else just in my hands. I really feel for you and I hope that you get the relief you need very soon. All the best. x
I’ve just had a call from the Rheumatology advice line. The Dr has told me to up the codeine and will write to my GP and request they give me another injection. Hopefully that will help and he also said he would see what he could do about nudging the Biologics request along (although not sure that’s possible maybe he was just trying to give me hope lol)
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Sorry I’ve been quiet!!
I was wondering if you could help
5 weeks after foot surgery 
