Not the norm RA symptoms, is anyone else experiencing... - NRAS

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Not the norm RA symptoms, is anyone else experiencing the same?

Debbie65
Debbie65
13 Replies

It's been awhile since I last contributed here, although I read nras posts regularly. I'm 3 years into a rheumatoid arthritis diagnosis but I have never experienced the usual pain, redness, heat and swelling I read about. I've always had hip and pelvic pain that aches and burns, sometimes down my legs and into my feet. I can feel stiff and sore all day and have shooting pains in my feet that keep me awake. I get sporadic shooting pains in my hands and shoulders/arms too. I'm plagued by headaches and extreme fatigue that has my whole body ache when I'm just engaged in every day housework. I have painful IBS episodes and rosacea, ( no relation I know ), and often feel isolated by it all. I've recently been prescribed methotrexate injection as it offers potentially a more effective treatment. This morning I cried when the nurse at metaject clinic asked me how I am. Pain and restless legs have kept me awake for much of the previous few nights and I'm just feeling low and frustrated. She advised me to speak to a rheum nurse about steroid tablets although my last injection was ineffective. The one medication that has been effective is amitriptyline, I'm currently on 75mg. I am unable to take brufen etc as it affects my blood pressure. Codeine based meds makes me nauseous. Unfortunately it seems each increase in amitryptiline dose lasts only so long and then I'm struggling again. Because my pain is widespread and displayed in different ways, ie burning, shooting, aching, I feel at a loss as to how to help myself or where to turn.

Is there anyone out there that can relate? Has anyone experienced the same pain and accessed successful treatment, medical or otherwise? I would very much appreciate any advice as to my way forward.

13 Replies
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Deeb2908

Hi Debbie

When I read your comments many of them are the same in my weekly diary commnets. Burning pain, legs cramps at night etc etc. I was on amtriplyine but went on to gaberpartin then Pregablin and then did a yearly cycle of each rather than just staying on one all the time as I felt I got worse after a while. Vit d was bad so now on pills. i am every joint in pain but not red just swollenmainly and hands fingertips hot with what looks like prosis.

I think this disease gives lots of different issues for each of us and its tryig to find what works for you.

We all are here to listen on your bad days just keep in touch to make sure you dont feel lonely. x

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Debbie65
Debbie65
in reply to Deeb2908

Thank you Deeb2908 for your reply. I think that's where I am now, amitryptiline is no longer as effective. It might be time for a review. Because I dont have the more usual RA symptoms I feel a fraud for complaining on here but there are days and especially nights when the pain is overwhelming, not in its intensity necessarily but the fact that at times it feels it's never ending, there's just always some pain and stiffness. I struggle knowing my life will never be the same. I have isolated myself and need to reach out for support from people like yourself that understand. I really do appreciate your reply, thank you. I hope you're having good days xx

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Bartsia
Bartsia
in reply to Debbie65

I use Pernaton cream on stiff/and painful joints and muscles and find it a great help. Look on internet to find local stockist -it is a greenlipped mussel cream from Switzerland. I use it every day.

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Debbie65
Debbie65
in reply to Bartsia

Thank you Bartsia, I'll look that up, I'm open to any suggestions x

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JFlay

Hi Debbie65,

I was diagnosed in January with seropositive RA and I haven't had any redness, heat or swelling either. I get symmetrical stiffness and pain and fatigue. My feet and ankles cause me the most pain and stiffness, they keep me awake at night or wake me up, I've been in tears a few times myself! I also get a lot of pain in the sacroilliac joints area in the lower back and stuff hips. Nothing abnormal shows on my x-rays 🙄

I was on MTX which was working but I had bad side effects so it was stopped. I'm now on hydroxychloroquine but only been on it 5 weeks and hoping it starts to work soon. Have you been checked for anaemia? that caused me to have restless legs and a course of iron stopped it.

Someone on here recommended magnesium gel so I got some today to rub into my feet, going to give it a try 😁

Hope you feel better soon!

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Debbie65
Debbie65
in reply to JFlay

Thank you for your response JFlay. I take a magnesium supplement that usually works but at the moment my body is going haywire. I think that's why I reached out. Lack of sleep, increase in pain, restless legs, fatigue, it becomes a bit overwhelming. I'm not one to reach out which is to my detriment. I'll have GP review my amitryptiline, it's the one pain medication that has always been effective. I may need it increasing or change to something else. I hope your magnesium gel and hydroxichloraquine work jflay and you have better days xx

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JFlay
JFlay
in reply to Debbie65

Thanks, I hope you do too!

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Deeb2908

Nevr feel a fraud pain is pain and its real and it hurts and causes fatigue, plus sometimes your body is not ready to tell the story it is going through by bloods tests etc. It can take time but just stay strong on getting regular reviews and x rays etc and of course US!x

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Debbie65
Debbie65
in reply to Deeb2908

Thank you so much, I'll definitely come to healthunlocked for advice/support. On my better days I might be able to do the same for others too. I've really appreciated your feedback, thank you deeb2908 x

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Tile
Tile
in reply to Deeb2908

Hi. I am not dxd with RA as of now. Have an appt soon. I have had positive RF of 100, 80, 60 and now 18 (range <14). Positive factor for decades but only one Rheumatologist rxd sulfasalazine which made me feel sick. But that was decades ago. I have read that just having a positive Rheumatoid Factor can cause pain. Have you had pain before actually having the disease with only a positive factor?

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Debbie65
Debbie65
in reply to Tile

I had pain for a long time but wasnt tested for RA because my initial symptoms were not usual, I had pain in hips/pelvis area, no swelling or redness.

Eventually my gp suggested i may have arthritis. I had a positive factor when the RA dr did the initial blood test x

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marvalusxoxo

My symptoms seem a lot like yours. I have much pelvic and low back pain..pain that shoots down the back of legs and also my knees and toes. I am not following the regular course of treatment like I read here are doing.

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Debbie65

Have you had a referral to a rheumatologist marvalusxoxo ? What treatment are you receiving?

I still dont have the more usual symptoms of RA but have painful hips/pelvis/legs/feet and hands. I hope you have good days xx

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