Will this pain ever get better
Been on a course of steroids (again) which make things bearable. this week it’s just been my salphasalazine. The pain is returning now the steroids have stopped. I am struggling. I am weary of this perpetual cycle. My recent b/t has also shown that my iron levels are low, so I’m booked in for bloods next week. I hate moaning about this condition, but I am not sure I can cope. My mood is low, I am exhausted, and not sleeping. Where do I go from here.😢
Comments
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Im going to try some extra care and nursing for my shoulders as ultimately with care they did settle down. Not easy though, when there is a lot of other things I would rather be doing.
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Oh poor you Woofy, I'm not sure what you've tried for pain management but I've found a TENS machine and CBD capsules to be a bit of a killer combination. I also use a deep tissue massaging gun to good effect when tendons lock up. It's a bit trial and error I'm afraid as everyone's pain is personal and what works for some may not for others.
If you're not already doing so, introduce some dark leafed vegetables into your diet such as Broccoli and Spinach, these are not only good anti-inflammatories but in the case of Spinach it's rich in iron so will also help tackle your anaemia.
I have just started a course of Acupuncture, it'll need about 4 sessions before I know if it's having any effect but that's something else worth checking out too.
Good luck, keep experimenting and researching - I'm certain you'll find ways to feel a lot better soon.
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You know what they say @Woofy . When you get to the end of your tether tie a knot and hang on. We spend a lot of time waiting - for appointments, for test results and, as you've found, for DMARDS to work. The steroids do give us false hope but, with luck, the sulphasalazine will work in time. Meeanwhile I've found the only way is to adapt what I do, concentrate on gentle exercises and eat healthily. (Though, if ever there's a case for ready meals, this is it.)
I'd be cautious about the CBD. Check first with your doc or pharmacist. This is what Versus Arthritis says:
" If you’re considering using CBD to manage the pain of your arthritis, it’s important to remember it cannot replace your current medicines, and it may interact with them, so please do not stop/start taking anything without speaking to a healthcare professional." (Their 'Bold' not mine.)
Remember, you can always ring the helpline. Sometimes a bit of TLC and understanding can go a long way.
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright1 -
Hi @Woofy
I think I wrote a very similar post in 2021. All I can suggest is you contact your rheumatologist and tell them that the sulfasalazine clearly isn't doing the job and your RA pain isn't under control. I went from sulfasalazine to sulfasalazine plus methotrexate and then to sulfasalazine plus MTX plus adalimumab before my PsA was under control. In the time it took to get it under control I requested and received almost monthly kenalog steroid injections. I felt they worked better than the oral prednisolone.
Hope you get some relief soon.
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Hi sticky. I’m hearing what you say. There is a knot in my tether, and I’m hanging on with slippery fingers.
not going down any cbs oil route. Going to give hospital a ring tomorrow. Think they are going to have to add in some mex this time. Thank you for your kind words.
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Thank you jamieA. Going to ring hospital tomorrow. I can’t keep on this perpetual merry go round. i feel a failure.
so wanted these meds to work, now I’ve had message from doc to say my iron is low, and to repeat bloods.I’m determined to get this pain under control, I have to. It’s consuming my life.
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Hi @Woofy
I was really unhappy with my rheumatologist at the time and put it all in writing to him knowing that it would have to be put on my file. I was then offered access to a pain management consultant, occupational therapist, rheumatology podiatrist and physio as well as being put onto a biosimilar of adalimumab. I realised I needed to be more vocal in my requests and not be a passenger in all of this.
Regarding your low iron are you taking NSAIDs and on a PPI like omeprazole? The PPI protects the lining of your stomach from the NSAID harmful effects but it stops other useful material being absorbed. I ended up with vitamin B9, B12 and D3 deficiencies when on omeprazole.
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Thank you jamieA. Going to ring hospital tomorrow. I can’t keep on this perpetual merry go round. i feel a failure.
so wanted these meds to work, now I’ve had message from doc to say my iron is low, and to repeat bloods.I’m determined to get this pain under control, I have to. It’s consuming my life.
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Thank you jamieA. Going to ring hospital tomorrow. I can’t keep on this perpetual merry go round. i feel a failure.
so wanted these meds to work, now I’ve had message from doc to say my iron is low, and to repeat bloods.I’m determined to get this pain under control, I have to. It’s consuming my life.
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Anaemia (low iron) will make you feel low and washed out, and that reduces your tolerance to pain. Hopefully getting your iron levels sorted out will help a bit. You’re not a failure, you’re a warrior, but sometimes the battle can seem overwhelming for a while. Hang on in there, you’ve got this. Xx
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Thank you jamieA. Going to ring hospital tomorrow. I can’t keep on this perpetual merry go round. i feel a failure.
so wanted these meds to work, now I’ve had message from doc to say my iron is low, and to repeat bloods.I’m determined to get this pain under control, I have to. It’s consuming my life.
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@Woofy RA can cause low iron levels and, in my case, has done on several occasions. Once the disease is under control that might improve but mine always did after the doc prescribed a short course of iron tablets.
You are most certainly not a failure. We are not to blame for our faulty immune systems. But do try not to push your body too hard when the meds are relatively new. Be kind to yourself. You both need and deserve it.
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
I ramped up my nursing plan. I started with coming off coffee, and moved on to coming off painkillers. The plan is, if it hurts, completely rest it. I think it will take about a week.
My do list for this weekend is set up a wheelie bag for commuting to work, charge the car battery (it goes flat as we only use it once a week). I was going to dig out my proof of age for my concessionary pass application but quite honestly I am already whacked out with no painkillers, and will probably have a lie down instead.
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Thank you jamieA. Going to ring hospital tomorrow. I can’t keep on this perpetual merry go round. i feel a failure.
so wanted these meds to work, now I’ve had message from doc to say my iron is low, and to repeat bloods.I’m determined to get this pain under control, I have to. It’s consuming my life.
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