hey I’m 25 currently still waiting for a diagnosis. In absolute agony in my fingers and wrists, hips occasionally hurt and arm muscles feel weak and it all started with my back which is the main area of pain for me. (Entire back and spine hurts) just seems to be getting worse
looking for some hope, has anyone tried Celadrin capsules I have heard good reviews about it, magnesium for muscle relaxation as mine feel like bricks or vitamin d? And if so have any of these helped for pain? Realy don’t want to be on medication for the rest of my life as I’ve never had a good reaction to them
does the pain ever stop and will I get my life back it’s been 2 months of straight agony with no break, starting to lose any hope that it will ease and it is getting me down :/
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Amywoodx
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OK so to answer your questions yes the pain will stop (or largely stop), and there is hope. If your disease is any kind of inflammatory arthritis you will need to take drugs to tackle the cause of your pain but you will be monitored and there are many drugs available if initial drugs don’t suit. It’s trial and error. Painkillers and the other things you list only help with symptoms. Trust me when you hit on the right drug it will be miraculous.
I’ll mention it in case it’s a possibility for you but you could go privately. Physio obv a lot cheaper than a rheumatologist.
Finally try the NRAS helpline. They are just that. Friendly listening voice with lots of information and advice. I’m sorry you are so young to be battling this pain; but there is hope. Lots of it.
Thank you, that gives me some hope which was very much needed at the moment. Sorry if you are not sure, but are all types of arthritis inflammatory? My rheumatology appointment couldn't come quicker! I'm just ready to be out of pain once and for all now. Again, thanks for your help
sorry to hear this, but hang on until you see a rheumatologist as you need a diagnosis and there are so many possibilities for your pain.
No-one wants to take drugs, but they can work wonders. I could hardly move by the time I was diagnosed and the drugs gave me my life back. With some people once they have been stabilised and gone into remission they can taper off the drugs and manage without them. So don’t look too far into the future, take it one step at a time.
Until your appointment look after yourself. So lots of rest, lots of water, a diet full of plants and lean protein and go gently with sugary and fatty foods. And a little bit of gentle exercise every day, or stretching.
Thanks for your response! Oh it's good to hear that people are able to taper off the medication once stabilised, I think i heard about that somewhere else too. I don't mind taking the meds if it is really going to help me be completely pain free just very wary of side effects due to previous experiences
hi Amy at your age theirs a few things come into play starting family may come into equation any have docs not given you anything for pain (boyfriend mite b andy) IF YOU CAN TRUST HIM this may sound DAFT but when i was in my heyday no snides please i twisted ankle BAD BAD but non the less went off to pub end session could walk not saying to you do same but a touch of something nice may ease your pain if you do not want drugs but b grateful for what you can get 8 week soon go by Amy yes for some peeps can go pain free not many if you can get a diagnosis is a BIG thing then they can tell the prognosis for you just b careful as its in spine no heavy lifting take it as easy as poss maybe forget boyfriend ps what about good soak in bath or try the the local baths just dont do to much
Oh bless you. You are so young too. Please don't worry, once you have been diagnosed you will be started on medication. I know 6 weeks seems a long time to you when you are in pain but that is actually very good, some people are waiting many months for a consultation. Your Rheumatologist is there to make your life as painfree as possible and he/she will do that. As for how you will react to the drugs given you is unknown until you take them. We are all individual and each of us reacts differently to the different drugs. You will be monitored very closely and I would say try not to be too hasty to suggest your particular drug/s are not working because they can take several weeks to kick in. In the meantime your Rheumatologist might give you an injection to help you. I have been on mxt for 20 years which has served me well. Good luck. Keep posting and let us know how your get on.
that's true, it could be a longer wait, so much remain grateful. What kind of injections are they if you don't mind me asking, what do they do? If it takes the pain away I don't mind giving them a go
You need to get a diagnosis first but It would probably be depo-medrone which is a corticosteroid and used for pain in rheumatoid arthritis. I have had a lot of these over the years and they have worked for me. All the best
Ah ok - are these used for flare ups only? Just had a look and it says they're normally prescribed for up to 8 weeks just to get over flare ups until a longer term med is found
Hiya! There's an NRAS group for 18 - 35 year olds which might be useful for you? We have a WhatsApp group which is a really lovely space to share and ask questions. Would you like to join? Drop me a message
There isn't I'm afraid. There's zoom meetings every month or so and also a WhatsApp group. If you check out the NRAS site details are on there. Creating a forum here is a good idea - I'll look into it!
Also I ended up paying to go privately to get my diagnosis so I could start meds. I found the NHS rheumatologist's private clinic and then went to see him. It's obviously not ideal and costs money but I explained I just needed the diagnosis so I could start meds as I was in pain, I was then moved back onto the NHS books. If that's not an option then just keep speaking to your GP and explaining you're in pain. I'm sorry you're having a hard time! X
thanks for your response! At the moment I don’t think I can go private unfortunately but hope you don’t mind me asking, do the meds give you side effects? I’ve just had a really hard time with side effects previously so quite concerned x
there are lots of medications and we all respond differently. You won’t be left on one that gives you side effects. Took me 6 goes til I found my miracle drug. Massively reduced pain and no side effects. The people giving you the drugs will monitor you closely and you will be given a helpline to ring if you have any concerns. NRAS have a booklet on medications (virtual and hard copy). I really recommend you giving the NRAS helpline a ring. They will be able to answer so many of your questions.
Yes, there is hope Amy, but not without medicating I’m afraid. We have had some over the years who initially preferred to not use medication (or were frightened to do so) & have tried supplements etc but it's either not lasted long until symptoms return with a vengeance, if at all. Believe me once you're settled on your particular med regime you won't be sorry, as some have said they wish they’d have started meds sooner.
If you are diagnosed & once you've given the meds time to work on your overactive immune system (all cDMARDs can take around 12 weeks though subtle changes may be noticed earlier) the pain & inflammation causing the pain reduces. What may be prescribed until your cDMARD has full effect is a corticosteroid (prednisolone usually), they work almost instantaneously. The problem is we can't stay on them too long (at higher doses) as they have problematic longer term side effects.
Did you try making an appointment with your GP? He may prescribe either/or prescription dose pain relief & an NSAID, maybe even prednisolone given you have your referral date in order to taper the dose in good time. You need to be sure you're med free for then to receive an accurate diagnosis & treatment plan. But remember, you don’t have to suffer until then. I wouldn’t recommend supplements as not being regulated they are a minefield regarding strength & excipients from one make to another. None are licensed on dampening down your immune system. You could try Pernaton gel (green lipped muscle) on your joints. It's not a medication so can be used more often than say diclofenac gel.
Please don’t suffer, see your GP. Once I had my initial blood results back my GP prescribed prescription strength pain relief & an NSAID. It went some way to helping prior to my diagnostic appointment, better than what I was taking anyway, over the counter pain relief & NSAID.
There is lots of hope, it's just the waiting, although to be honest you're fortunate in that it's not that long to wait, but when you have that pain I appreciate it can seem like a lifetime, but it doesn't have to be. ☺️
my GP has prescribed Amitriptyline just super cautious to give it a go, they gave me naproxen too but hasn’t done anything for me. I will continue to take it though. I used a massage gun but think I may have done too much as I’m now in a lot of pain in the muscle that I focussed on. Do the meds for this condition give you side effects?
I'm prescribed amitriptyline but for neuralgia & as a muscle relaxant. It also has a somnolent effect which can be helpful if the right dose is taken at the right time! As neither are true symptom of RD except where nerves are pinched or trapped due to inflammation I'm not sure that would be the best help. Naproxen works better taken regularly, but in common with any other med it doesn’t work for everyone. If you let your GP know he could prescribe another, there are plenty of other NSAIDs. I would ask for a good pain reliever too.
I don't know about massage guns I'm afraid as I’ve never tried one but it doesn't sound as though it's ideal if you can make the pain worse. It might be an idea to shelve that just now.
The meds used in rheumatology are no different to any other in regards to possible side effects, but it's not a guarantee you'd have any. Of course pharmaceutical companies have to list all potential ones found in the 4 stages of clinical trials of med development, it may seem a long list. Many side effects are mild, especially common ones, others maybe not so but you won't be made to stay on anything that makes you feel awful, as long as you keep your Rheumy informed & report any problems. His/her intention is to make you feel better from medication not worse. Of 4 DMARDS I've tried we stopped 2 due to side effects. It's better not to focus on side effects you may never have, use that effort to concentrate on being better. 😉
Well, I started off onhydroxychloroquine which worked for a year. This was replaced by methotrexate which I'm still on, first year tablet & injections ever since, so that's 13 & a half years in total. When I needed another DMARD (double therapy with MTX) sulfasalazine was chosen. I had to stop that after around 9 months so then tried leflunomide which also had to be stopped due to peripheral neuropathy & carpal tunnel syndrome. What was decided was increase my MTX dose & remain on low dose pred. I've since reduced the MTX dose but not quite a well controlled as I could be as I’m also doing a long taper of pred.
If you're taking it as directed on the personalised pharmacy label on the box (once a day possibly?) & it's not helping report it to your GP. It can be taken twice a day so he may up the dose. NSAIDs are generally better taken at night so the morning stiffness is eased. I take my etoricoxib with my other evening meds. Were you prescribed a PPI (Proton Pump Inhibitor or stomach protector) such as omeprazole?NSAIDs can be harsh on the tum so they are usually coprescribed.
Yep i was given omeprazole. I did mention to the GP that naproxen wasn't helping so she prescribed amytripolin but if I had to take a guess at what would make me feel better I would say a muscle relaxant would do the trick as my muscles are what feels sore at the moment (i think?) it's so hard to tell. I actually did take a naproxen last night and woke up with a little less neck pain although now I feel like I am at level 100 in pain again in my shoulder blades and back. I may take another dose and keep seeing if it helps
Well, honestly I would give the amitriptyline a try, your guess will likely be right! You'll have been given a low dose initially, it's one you usually build up over a period of time. It took around 4 months for me to titre up to 25 mg morning & 50 mg evening. Be careful if doubling your naproxen dose without your GP's knowledge, your prescription won't last as long of course.
Ahh ok - she did tell me to take it at night only because some people feel extremely fatigued with it, not sure if you ever experienced that - i don't' think everyone does which is good
If I was to take my evening dose in the morning then, yes, I’m not as sharp thinking. I had to try a few times in the evening before I got the right time, particularly once I started 50 mg… too early & I was asleep in the chair, too late & I was still drowsy when woken up. It is a known effect, some take it as a mild sleeping tablet I believe.
i think Ibuprofen, paracetomol and aspirin are overlooked drugs! Viewed sometimes like being given the Lidl drug selection rather than Waitrose - but they can be very effective! I always give these a go before I open the drawer with the heavy amunition!
the waiting is hard but maybe it is good because there might still be a chance that this is just some weird viral thing that will go away. I was told to take painkillers consistently for two weeks to see if that gave me relief. Follow your doctor's suggestions. Can you make consistent appointments with your GP to help you get through this emotionally and physically? I think that I went every two weeks for awhile. Honestly, I was resistant to medicine and very scared and very angry and very sad. There is a light at the end of the tunnel even though it is really hard and awful right now.
sorry to hear your struggling, when so young. 6 weeks isn’t too far away, many are waiting much longer. I have a relative in Belfast who has a 2yr wait for her first rheumatologist appointment.
I wouldn’t get too hung up on side effects, and forums like this tend to be more those who struggle, the many who don’t struggle are too busy getting on with their life’s. So even asking re side effects, you won’t get a true reflection. I’m on methotrexate which I get no side effects from, and I’m monitored closely. I also have a weekly biologic injection and on steroids for life. In total I take over 20 meds and don’t get side effects to any.
You need to take your nsaid regularly to keep on top of the inflammation. Sadly I think an expectation to be completely pain free may be unrealistic, and could result in you changing meds too quickly, when you don’t achieve that. Most take up to 12 weeks to fully work. Your quality of life will improve once you find the right med. Given your age you may want to think about any plans to have a family, as some meds would be unsuitable then.
I take amitriptyline nightly, been using it 10yrs, and it helps with the tension in my muscles, when I try reducing it the muscle pain intensifies. It also improves the quality of sleep, which makes it easier to cope during the day. I also use a muscle relaxant called Baclofen which isn’t addictive like many others. I have ankylosing spondylitis rather than RA, so my back, ribs and pelvis are my worst areas. The methotrexate I take as I also get peripheral symptoms especially in the hands, feet and knees. There are many different types of inflammatory arthritis out there and it may take a few visits before you get a confirmed diagnosis. However you will get there, meantime rest as much as you can, and do gentle stretches to break up the inflammation. Applying heat also helps, I have a little electric heat pad which keeps its temperature, but you could use wheat bags. Hope you get answers and treatment soon.
hi thanks for your advice, I took amytriptaline last night but it didn’t seem to help me I was still in pain and kept waking through the night but it was my first night taking it. As you said, I should be keeping on top of the NSAID’s which I don’t, I’ll take them once and then find they aren’t helping so stop taking them for a while. But you are right 6 weeks compared to 2 years is nothing!
I should have mentioned Amy, amitriptyline doesn’t work immediately so you not feeling any benefit is no surprise. Really your GP should explain things like this when you're prescribed a new med. Depending on how many tablets you've been prescribed (it's usually 28 days) if you don't notice any change by the time you finish the packet let your your GP know. He may consider repeating the same dose or increasing it slightly as it can take around 6 weeks to reach full potential. Don't think because it doesn’t work quickly it's not going to work at all. In common with all meds they don’t suit everyone but don't stop taking it because you don't feel they're helping. Most of the meds we take have a build-up period. You don't have immediate relief like pain relievers, would that they were! If RD teaches us anything it's patience. 😌
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hoping for a miracle 
Update and hopefully helps
Hoping for better meds
Hope everyone’s doing good!
Not the consultation I was hoping for
