I was diagnosed with RA 8 weeks ago. I'm a self-employed graphic designer and the RA has gone straightinto my hands, fingers and wrists first. So work has been almost impossible.
For 6 weeks I have been on steroids, hydrochloroquine and sulphasalazine. They have increased the dosage each week but I've had awful side effects. When I reached 2 hydrochloroquine and 4 sulphasalazine a day, I could hardly walk I was so dizzy. I had terrible nausea and fatigue, headaches and blocked ears. Just couldn't function. My specialist reduced it back down to 1 hydro and 3 sulpha a day, and I don't feel as bad.
But but but, after 6 weeks the RA has not improved at all, in fact, I feel worse. The utter exhaustion and fatigue is crippling and I have only managed to work 2 days in 2 weeks. What makes everything doubly hard is that I am single with no kids and I live alone. I feel incredibly isolated and depressed having to deal with this on my own.
I eat healthy, meditate, but nothing seems to be working. Just finding it hard to keep going.
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Jules13
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I'm sorry to hear that you are still feeling so bad. RA is not a predictable disease and neither are the treatments for it unfortunately. It can be trial and error finding the right drug to work for you and it can also take a while for you to feel the full benefits of it. It can also be a very isolating condition but everyone on this forum are very helpful and supportive.
You can always call the helpline to talk about things as well:
Thanks Beverley. I really appreciate all your help and putting me in touch with Sharon. Our situations are very different but she did educate about the condition itself.
Jules my right hand elbow where it first started before it travelled in both direction I use my hands a lot writing I am a coordinator in a club I help to organise bus tours for our members and run s theatre group over the years I have learned to use my left hand for a lot of jobs unfortunately I still need to use my right hand for writing I am on lidocaine patches. Please ask your Dr to give you some I have found them very effective nothing kills the pain but the plasters made a sufficient difference toward your health. You will be able to cope better once the pain settles there are stronger patches You know the saying Nothing ventured nothing gained. These do not effect your stomach. I feel the hand are the worse. I also have a cake of imperial lather Soap in my bed I sometimes hold it in my hand Maybe just in the mind that it helps.
Do you know, it's not even the pain that's the worst thing now. It's the utter fatigue. The dizziness and headaches. And feeling of being on the verge of flu all the time.
Hi Jules, I am so sorry that this is happening to you. It can be so overwhelming at first but I pray that your doctors find remedies that work for you. Do keep a log of what you are taking and how you feel and let your doctor know that you are suffering. I don't know if this is possible for you but I find so much comfort from my dog. I am lucky to have a husband but he travels a lot and it's often just me and Chloe. Even when I feel terrible (way too often!), I feel a little less terrible after a walk with her. Maybe a neighbor has a small dog you can borrow? Are there any groups you can join? I was thinking of doing this myself. No one understands this like someone who is going through it. Please feel free to message me if you are feeling sad. This group will be here for you. Keep us posted on how you are doing. Hugs and feel well wishes to you! Take care, Penny
Thanks Penny. That's so kind. Yes, many of my friends say how comforting it is having a dog.. like a warm cuddly therapist!
I am in a bit of a tricky position right now in that I am house hunting, renting a room in a house, so even more, I feel like a don't have a home or friends and it is incredibly stressful on top of all the health issues. I know once I have my home it will feel different.
Stress makes Rheumatoid worse and often a big upset starts it up. If you can't have a dog yet, get a hot water bottle with a really nice fluffy cover and stroke that. The heat helped with my pain.
The other thing you can do even in your circumstances is get some meditation cds and have a lay down when you can and listen to them with the ear plugs, it really helps to calm the fear and helps with the pain.
Sorry you are suffering so badly. I am on my own too (apart from dawg) so understand the fear, anxiety and isolation.
I was really bad in the beginning. I have to say that sulfasalazine made the pain ten times worse for me. I had an awful reaction to it. Might not be the case for you of course, but if you are feeling worse than you did initially, it might be worth reviewing meds.
I am sure things will get better, don't lose hope. I thought I'd never feel better again. Things aren't perfect, but it beats how things were. Just had a steroid shot in the butt ( easy target!)
Hmm not yet, but it's early days. I've only tried sulfasalazine and leflunomide. Sulfasalazine made things worse ( as I said). Leflunomide OK but hasn't worked. So just have steroids shots to tide me over until I see rheumatologist in December. Plus a bit of Arcoxia.
oh I forgot the vitamin D and calcium. And I already had a good eating regime so have tweaked it so that I'm almost cutting out dairy, caffeine and gluten. Also I swim... well if you can call it swimming. My wrists and hands hurt to even stroke the water so I end up treading water! Look like and idiot! But there is also a steam room where I swim and that's good too.
Hi Jules only fellow sufferers know how bad we feel at the beginning of this awful decease and it is hard to see a light at the end of the tunnel.At the start i felt exactly the same and i could hardly move the pain was so bad but things do get better but they just have to get the right combination of meds i hope that time comes soon for you and just remember things will get better.
I share your reservations about 'like', sylvi and couldn't think how best to acknowledge how justifiably rough Jules13 is feeling right now.
On some boards (not on HU) they've introduced 3 buttons - Support, Thanks, and Useful - this is one of those times when 'Support' seems more appropriate than 'Like' doesn't it.
@Jules13 - one of the excellent things about this board is the perspective it gives. People here have been through such horrible troughs when nothing looked like it would come right but they persist and there are truly moving accounts of when they move into remission or there is an improvement that seemed so impossible and out of reach at an earlier point.
The depression might well be part and parcel of this flare-up for you as there seems to be a strong association between inflammation and depression.
Unless they've been given steroids in one form or another, it's not unusual for people to report that it takes up to 12 weeks until the benefit of a DMARD or combination of them to kick in.
Post about how you're feeling - people here do understand.
It's also hard knowing if its the RA thats making me feel hideous, or wether its the drugs. I have never had these symptoms before so I don't know how to differentiate the two. Is the RA causing the exhaustion and fatigue and dizziness, or is it the drugs? I finish the course of steroids tomorrow and I'm dreading it. They may not have helped much with the RA but they have done wonders for my osteoporosis arthritis!! Silver lining and all that!
Yes, I think so too. It's not exactly depression, but the anxiety of house hunting on top of taking so much time off work is really bad. I wonder how I will survive on my own. I worry about 10 years from now, when I'm 59 not 49. If its bad now, surely the older I get the worse it will be. No kids no hubby no dog... and I just think, good god, this is crap with no one to help.
I'm so sorry. It's so very difficult in the beginning. I was unable to dress myself or walk well when I was first diagnosed and now I'm able to do almost everything that I want to do. It takes times to find the right treatment, but don't lose hope - the right treatment is out there and you'll start to feel better. If you don't think that your doctor is listening, go to a different doctor, and keep going until you find someone who will do what it takes to help you. This made a huge difference for me. I found a doctor who helped me to look for the underlying reasons for this autoimmune disease and helped me to treat them (Vit D deficiency, leaky gut, to name a few). Take care.
It's tricky because I have a great GP but she is reluctant to butt in on my specialists treatment for me. I have only seen my specialist once, the rest of the time it's specialist nurses who report back to her. When I phone for help, I can only leave a message and then the nurse rings back. They all just keep saying, "Hang in there, it will get better." But if I'm on the wrong medication after 8 weeks, then they have to start from the beginning again?
Many drugs take at least 3 months to be fully active. I'm surprised that steriods haven't been effective. I hated hydrochloroquine - my ears were buzzing and it was ineffective for me. You're not on methotrexate?
I just wrote a question about that because everyone is asking why I'm on sulphaslazne rather than Methotrexate. I think my doctor was worried about the frequency of the blood tests for Methotrexate, as I am living and working in different paces. Renting a room somewhere else and 2 hours from my GP. Doesn't make things easy for me. I think there were less side effects with the Supha too although I cannot take the nausea and the buzzy ears. I'm not even up to full dosage yet so thats freaking me out.
MTX seems to be the go-to first line of defense after diagnosis. I'm on MTX, 15 ml per week as an injection and I have one blood test every 3 months. The injections are better than pills in my opinion because more of the drug is effective (doesn't have to go thru the stomach) and the drug by-passes the liver. I'm seropositive.
Hi Jules, very sorry to hear this and hope RA medication is soon working and will take that stiffness and difficulty from the hands. Understand entirely as I am an artist having originally qualified and worked in graphics. I have had many issues with my fingers at first as that's where my RA settled, and some damage at first but it hasn't stopped me pursuing my BA and MA. Once the arthritis is controlled and the inflammation in the joints has calmed down I hope things become much much easier. The fatigue is awful at the start of RA but it does improve once the general inflammation subsides. It often takes some weeks to calm so don't lose hope. I used to find that wax hand baths my hospital rheumatology physio gave me there helped enormously. It took the sting and stiffness out of the hands, wrists and fingers for a few days. You have to keep up with them a couple of times a week to stop the stiffness coming back but when you're waiting for meds to work it can help a lot.. I also had a hydrocortisone injection to each wrist so I could do my artwork. Hoping things soon settle and you feel improvement. Good luck. 💕
Thanks so much. God, trying to work for 8 hours drawing and on the computer is hideous. I wear a wrist brace which helps and use a Wacom pen too sometimes. I can even deal with the pain of it... its the utter fatigue that is debilitating! I work for myself so is doubly hard and the stress of not earning is killing me too!
I understand you Jules .. Awful times but the fatigue does calm down a lot once the medication starts to work and the awful flu like feelings calm down. They disappeared for me after some months but until medication was working well I felt like I had been up for days with no sleep. I used to take breaks when working on the computer and fill the sink with warm so sky water and submerge my hands/move my hands in it to and release the stiffness/strain. My physio recommended that and it helped. It's so frustrating waiting for something to kick in and work when you are trying to get in with your life. Julie x
I was diagnosed in April I was put on methotrexate & prednisone. In August started experiencing shortness of breath so was taken off methotrexate. I have just been on prednisone for the last couple of weeks. My nurse practitioner has decided on Leflunomide which I will start this week. I'm also single no kids & live alone so understand your struggle. There are mornings I wake up so depressed & I just stand in the shower in tears. I eventually get myself together & get going because I have to. I started yoga in June which has been pretty helpful. It's very hard but you will keep going. The majority of my pain is in my right arm, which sucks when your right handed.
It's hard being single at the best of times but with an illness it's even worse isn't it? I have been sitting in the car, feeling like shit, but knowing I have to work, and then I get 5 minutes into the drive and know its impossible. Turn around and come back utterly exhausted.
Yoga I practised every day my whole life but I can't now even get on the floor. I also had a knee and thigh replacement a year ago so can't kneel either. makes yoga a wee bit tricky. I did start pilates where they can focus on particular areas of the body but at £40 a time, I've had to stop that too cos of money.
Are there any tai chi classes near you? It was the only form of exercise I could manage when I was first diagnosed age 50, also self-employed. Couldn't do pilates anymore as like you I was unable to get down on floor. It needs to be a gentle form of tai chi (the breathing will be familiar from your yoga practice). The other things that helped me at the early stage when you're in pain, exhausted, depressed ... was taking a mindfulness for wellbeing course, joining a local support group for people with long term health conditions, phoning the NRAS helpline, getting out everyday even if briefly (I bought a stick) and attending an RA self-management programme (jointly run by NRAS and Self Management UK) held at local hospital. It's great that you are already a healthy eater and the yoga will be helpful later when the meds start working. It's a huge readjustment, like a grieving process for the life that you used to have, so you develop new skills in self-management and get good at looking out for any help that is available locally (libraries also have information about local charities and networks). And you've already demonstrated you're resourcefulness by finding out about this forum and using it! All the very best.
I was a dedicated embroiderer, for the church and myself, and that's where it got me first.
The bitterest pill to swallow is that there is no cure, just treatment and everything takes time to help.
It's going to take maybe six months before the methotrexate starts to help, it may take less depending on each individuals RA.
My best advice is to try to get a good nights sleep, avoid alcohol, take a really good Mega B vitamin, plus magnesium at night.
You should be able to get the thermal gloves from the chemist without the finger tips and wear them all the time and put a heated wheat bag on them when they are paining a lot.
That should help with your hands. Your body is fighting a war with the medication, that's why you are feeling so tired. But once the tablets start to gain the upper hand you will start to feel better and might even go into remission.
Try not to get down, perhaps anti depressants are a good thing for you.
I'm actually on Sulphasalazine not Methotrexate... not sure why. if they change my drugs, does it take another 3 months to get into my system? I'm on week 8 of Sulphasalazine and no improvement at all.
Is the vitamin a B12? And Magnesium, yes, good idea.
Hi Jules Please have a look at Robert Redfern blog regarding R.A. Some very good anecdotal outcomes if you want to look at alternatives to the meds. you are now taking
Julis I'm reading everyone's answers. A dog is all very well go have if you are fit to walk it You have got to think you'r hands are sore how would you hold reins A dog needs walked what happens when you get up in the mmor img you feel sick it's an effort to take yourself out of bed. The dog is howling to get out Forget thinking about a dog you have enough on your plate keep your fingers moving instead use a rubber ball squeeze it that will help to keep your fingers moving Mtx. Is just a drug like the other ones it has side effects too And it's not suitable for everyone. I have had Mtx and it affected my blood level and my kidneys and had to come off it Please ask your Own Dr at Surgery to prescribe lidocaine patches. You will find a difference after a few days. It won't cure the pain but it will. E more bearable.
Haha. The idea of s dog is lovely. But I need a house first. And yes, I know how much work they are as we had dogs growing up. Definitely not my priority right now. X
You poor thing, really feel your pain! I was diagnosed with RA 2 weeks ago, I'm 55. I've never felt so shite in my life! The pain hideous but the indignity of not being able to even go to the loo horrible! Everything I did prior to this diagnosis I just totally took for granted like running up and down the stairs, getting in and out of the bath little things like that. And yea cried alot with the usual thoughts to which I'm assuming everyone has had with this bloody awful condition " why me" ' ive got it for life' ' worried when I wake up I'm going to get another flare up worse than the last. And worst of all I'm not on medication yet so a whole new challenge to come! Im sorry i cant give you advice on meds, wish I could. What I've learned from this forum though is everyone understands the pain, and have and continue to give great advice. To be honest I really feel for you regarding your personal circumstances it must be so hard dealing with this alone I can't imagine what you're going through! I'm sure there must be support groups out there where you could meet up with people experiencing the same pain as you. I really hope you find the right meds and start to feel better though. Ill let you know how I get on with mine. Take care
There is support groups but a bit too far from here. Luckily I’ve made friends with people on here and although I can’t see them I pretty much message daily so this place really has saved me. Xxx
Sulfasalazine has naffed up my ears no end, to the point now where I can no longer hear out of my left ear, I was fine on 2 tablets a day but once it went to 3-4 tablets a day that’s when my problems started! It was horrendous 3 months to get rid of an ear infection only to be told by ENT my nerve that runs from my ear to my brain so I can hear is permanently damaged, the tinnitus sulfasalazine caused aswell a whole different kettle of fish! It was horrendous still hasn’t gone away 6 months after stopping them! I’ve just got over another ear infection another 3 courses of antibiotics to clear it up! Hope you find something that works for you and doesn’t have such horrid side effects!!
Yeah I told them and they instantly stopped it on the recommendation of the ENT it was doing more harm than good. And unfortunately some permanent damage to my hearing 😳 I’m only 36 and have Spina Bifida along side RA and now partially deaf my life is epic!
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