Please need help : Hi everyone i am Mazhar I am in too... - NRAS

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Please need help

Mazhar12345678
Mazhar12345678

Hi everyone i am Mazhar

I am in too much pain in hands and feet’s I was very active and fast but I can’t walk more than ten minutes before I walk miles and miles without any problem but now I can’t walk more than ten minutes with stick I am 40 year old male every day going down and down recently diagnose in February And am on Mtx 15 mg weekly and hydroxy 400 mg daily and 120 depo steroid injection had in starting but not working this is my six week on Mtx side effect short breath and when I breathe pain goes in my ankle

I know you all people here help each other I am bedridden at the moment and Gp not interested he said this is hospital case I can’t do anything and I am very scared about my future i was like a builder

Can I able to work again?

Can my hands get better?

Can I walk miles and miles again ?

What to do help me if you guys can please

Thanks

25 Replies
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Hi.I am not in any position to offer certainty about your questions, but I can say i understand how difficult the uncertainty feels. I am sorry you feel so awful.I It is horrible when steroids have worn off and the other drugs have yet to work.Have you been given folic acid for Methotrexate side effects? My husband, the one with RA, had terrible fatigue so went to 5-mgs to 15mgs of folic acid and currently anyway his energy has increased. We are also waiting for meds to work to improve mobility. iI is difficult to be patient, especially when you need to be earning..

I wish you all the best and hope the meds kick in soon.

Mazhar, Don't despair. Your medication should help when it works fully. Otherwise, do you wear shoes with thick rubber soles? Some training shoes are extremely well-padded and cushioned. Likewise some walking sticks have a gel-filled handle to act as a good cushion. Even wearing cycling mitts can help because they are fingerless making it easier to get them on, plus they have palms including gel-filled pads.

Hope these ideas help?

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Taking one day at a time when each day seems like a week is certainly tough! I understand it takes 12 weeks for medication to really start working. Look after yourself the best way you can.

How awful you are feeling so

Low but your not alone it happens to us all . It's playing the waiting game for everything. When your meds kick In you should feel a difference hopefully. Sometimes it's trial and error to see what meds are best for you . Try ice or heat on the effected areas see if this helps . Also plenty of fluids and a healthy diet helps. We're all the same some worse than others but we're all here to help . Dont give up and remember if your feeling so low the only way is up .... positive thinking that this awful disease wont get the better of you ..... good luck 🌹I think you should be taking more folic acid .

My hands are all shapes and bruised . My chest is the worst , my back, my knees but things could be worse. We all have our off days we're we're feeling really down and can't see a way out . Just one day pain free and normal would be great . You have got to give your meds time to get in your system and yes it will feel like ages but eventually they will start to work and you will see an improvement. Just think positive and I know it's hard when everything is hurting so much . Getting yourself stressed will make matters worse . We're all here to help each other sometimes just speaking to others who are the same and know exactly what your going through helps .... chin up 😊

Thanks jayneN I hope you feeling better soon 🤞 yes I am not alone you guys understand What’s I am going through

Sorry to hear your going through the mill at the moment, hopefully the meds start working soon, have you tried compression fingerless gloves you get them on amazon and they really help my hands as I get terrible bother with them and ask for an appointment with your podiatrist to see if they can make insoles for you which should help your feet xxx

Hiya Mazhar. I'm sorry, you're in such a pickle, it's awful when newly diagnosed & waiting for the meds to work fully, the time you have to think if you'll ever be right again especially if it's meant you're bed-bound. I was never as bad as that, I was at least able to get out in the fresh air & carry on, differently, more slowly but still not confined to being indoors.

Have you had your follow up appointment with your Rheumy, or nurse yet? Usually around the 3 month mark following diagnosis you do, it sounds as though you're needing a little help, I'm thinking particularly with you saying you're having breathing difficulties, though what the connection could be with breathing & pain in your ankle I'm unsure, I've not heard of that type of transference of pain.

Your GP not being interested isn't that unusual given you're now in receipt of secondary care. Generally GP's hand over your care to Specialists because they don't have the wealth of knowledge needed unless they have a special interest in a Specialty such as Rheumatology, that they've had extended training, a postgrad qualification, in something other than their role of GP. I was fortunate in that the GP I had when diagnosed was a GPwSI so was very clued up on my issues, yours probably isn't & so unless there's something he can specifically help with he will refer you back to your Rheumy. More general medical things, maybe arranging a steroid injection or increasing oral steroids he may be willing to undertake, or maybe contact your Rheumy for advice, but not changing any of your specialist meds, the ones your Rheumy can only prescribe like your MTX or HCQ.

Your last three questions depend on your response to your meds & time I'm afraid, but definitely ones to to discuss with your Rheumy or nurse next visit. In the meantime you've had some good suggestions of help, try those & see if they help. Otherwise it's a waiting time, I'm afraid, we've all needed to have patience at the beginning, & when changing meds, things often don't work as quickly as we'd like them, or need them to, but things will become easier bit by bit.

You're welcome. Your Rheumy will have given you your steroid injection to try to calm the inflammation & pain down whilst you wait for your 2 DMARDs to work. They can both take around 12 weeks, sometimes a little more, you've only been taking them 6 weeks so whilst it might feel as though they aren't working yet they probably ar it's just you don't feel the benefit just yet. You may start to notice subtle changes soon but if your general steroid injection isn't working or has worn off do contact your team for advice, you should have been given a helpline number for your Rheumy nurses.

The nausea could be from the MTX, it interferes with the absorption of B Vitamins, including folate & why we need to supplement with folic acid so often if our Rheumy increases the days we take our folic acid the symptoms subside or even go. I've been on MTX 9 years & initially was prescribed folic acid only once a week, that was increased to 2 & I now take 6 a week. When I started MTX my dose was 15mg & was advised in order to avoid nausea to not take all my tablets at once but to take it in separate doses, 2 tablets each with meals, breakfast, lunch & evening meal. Some do take them all at once at night but I doesn't suit everyone. As I said before though if you're breathless it sounds as though you need some help, let your Rheumy or nurses know.

I understand the fear... This hand we have been dealt can be a tough one, for sure. Rheumatoid Arthritis is a "progressive" disease, which means it will get worse as time goes on. Remission is simply getting it down to a weakened state to where it won't be as aggressive. During this time, your pain will diminish but it won't be gone. You'll have good days and bad days. Many can't work after a while or take deminished roles in their current job situations. I am unable to do the load of work that I used to do. Instead of working 3-5 days a week, I work one day a week. I know I a m sounding real negative but I wish someone would have been honest with me a couple of years ago. Here's the thing. We can choose to NOT let this take us over. Concentrate on the things that you can do and be proud of yourself for the little things you accomplished. Be clear with your family that your ability to bring in your usual income has been interfered with and things possibly could change. I am a fine artist and private educator. My work load has fallen to about a fourth of what I used to be doing. I was encouraged to discover that the artist "Renoir" battled Rheumatoid Arthritis the last 20 years of his life and career before his being taken by complications of the disease. He did some of his greatest working having his assistants tie the paint brush to his wrist so he could continue to paint. Inspiring! Blessings on ya, my friend.

Thanks Rembrandt

Brother i am felling my future finish I cannot go to the toilet without help cannot make a tea without help Without work I cannot Survived my brother I am 40 year old ,I don’t know how long I live in this condition I hate my life. I am always thinking negatively. I have only one topic to talk my disease I have friends here on nras

woodstar, Ahmed ,hawker, Ame lee, helix smiler, preacherman,nomorehell very nice people always here for help people I respect these people

My brother what you recommend this disease is permanent disability there is no any medicine for people who want to do normal things which they love

Is there any help?

Try to get disability but it isn't easy. The Federal government makes it hard and usually turns you down the first three tries to get it. The State government tends to be a little easier. There is no magic pill to take. Eastern medicine has the best approach to autoimmune disorders. My insurance doesn't cover it. Become a man of faith and prayer a lot... It's really the only thing in this World that we can control... How much time we spend in prayer.

So sorry that you are struggling but what wonderful responses you have received. Some really good advice. My podiatrist recommended Nike air max trainers. Now I know this will sound crazy but I find moving actually eases pain Good luck one day at a time give those drugs time to work and if they don't there are others

Thanks Gillian are they Nike air max huaraches or old school

Like hawker told me cycling shoes and thick rubber shoes

You may never be this bad again. I was bedridden for 6 weeks mire than 20 years ago. And then each month i got a bit better and had remissions. One remission lasted 13 years with no medication. I was advised to " walk through the pain" and slowly no built up from 10 minute walks. Eat healthily,not much red meat or none and drink lots of water. Floradix herbal iron tonic is also super . Really hope you are through this bad time very soon.

Thanks kalimer ,can you explain please your remission please 13 years without medicine

My symptoms just started to get less and less . I had started a new job and I was much less tired in this job. I walked about 5 to 6 miles every day as I don't drive. I try to eat very healthily and organic, lots of fruit and vegetables, fish and chicken. I had a lot of stress in those 13 years with my daughter who has serious mental health problems and I also looked after my mum who had dementia. I was amazed all that stress didn't trigger a flare up but it didn't. 2 years ago I had a lift conversion and I was looking after my 5 year old grandson as my daughter couldn't. I was alsi working. I was absolutely exhausted. Then my arthritis came back. Rheumatoid Arthritis is a mysterious disease. I have had 2 other remissions of 3 years each and with no meds when I caught influenza. The symptoms disappeared in hours. I have been lucky - so far. I hope this happens to you. I desperately wanted to keep my job and I was able to. Sending you lots of positive thoughts.

Hi kalimers , I salute you dear and thanks for good wishes

I was more or less like you just over five years ago. Could only manage a few steps then I had grab hold of furniture forvsupport. Had to have meals brought to me on a tray all cut up. Just getting out of bed in the morning was horrendous. I could just manage my own personal care, it was a real struggle but somehow I managed it.

How am I now?......in remission for the past five years, no pain relief required...all thanks to anti tnf enbrel. It’s my miracle drug, I felt it working the day after my first injection too . Twelve weeks later I was in remission.

It does take awhile for meds to work, or to find the right combination of drugs for you, but it can be done. With RA their is no one pill suits all, everyone is different. It takes time, we really have to be the patient patient with RA. x

Thanks Paula C

Are you still taking biological ?

Yes, I also take mtx.

You need a rheumatologist. Not a regular doctor. I was there and I can feel your pain. The rheumatologist helped me immensely. It took about six months for me but I am much better.

Thanks Marycullen. Still feeling bad don’t know how long I have to wait thanks

Hi, Mazhar, I understand what you are going through, I lost a very dear friend a week ago as a result of intolerable pain levels. I have also been down this path and had a series of different pains and symptoms. In the end I had enough of the different diagnostic conclusions and decided that I would research my own case, especially since there was no record, all the letters were missing from my GP files, of a diagnosis and 2 years under a consultant at 12 years old of Osteo Arthritis. I have an advantage in having received a very good education and I am fairly knowledgeable of biology and medical conditions.

My research took 2 weeks, was very thorough, leading to only one conclusion, Enthesitis which is a little known genetic disease, having seen 6 consultants over 3-4 years the last one accepted that my findings were correct. That at least gave them and me a starting point for medication and knowledge of what the future holds for me, it is now manageable and I have some spare doseage to allow for an increase in my medication as things get worse.

It does appear you have multiple issues, even if they are aware of all your past history it may be of some help to you to research your own case, you may gain an insight into what the future holds, it will also give you a better understanding of the medication you are taking. There is a very good site drugs.com where you enter all your medication and it will return with the interactions which in themselves may be giving you some problems, it will help to have that knowledge when you discuss the matter with your GP, mine is excellent and very supportive. It appears your GP isn't as supportive as mine, my prior GP who was the head of the same practice was equally very dismissive of me. You need support now if you are bedridden, contact your local council adult social services and explain this to them, they have a duty to assist you, you may need to find another GP who will be more responsive and also contact your local disability advice centre, generally run by very helpful and knowledgeable volunteers. If you want to pm me with your diagnosis and symptoms then I will do some research for you.

Steve

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