Constant hip pain, exhaustiona and dizzyness.... any advice?

[Tracylux]

Hi, I'm 49 and was diagnosed 2 yrs ago, on Hydroxy only. I used to suffer with flares that lasted approx 12-24 hours but were really painful (level 10 on scale) and was OK rest of time. 2 yrs on, disease is obviously taking it's toll as now seem to be in low level pain, all over, every day. Pain is about level 3 - 5 in various joints all the time - wrists, fingers, ankles, shoulder and left hip. Hip is worst, now having problems daily with movement - trying to get into our car which is a 4x4 so quite high is becoming really difficult. can't walk for more that half hour before limping badly.Niggling pain keeps me awake at night. I am due to see consultant in Oct (posptoned from July due to who knows what). But not sure whether to book appt to see GP prior to that to get hip checked out. Could my hip be permanently damaged this quickly ? Am also suffering constant fatigue, which again, I hadn't notice before and also, in the last 4/5 weeks, constant dizzyness. Apologies for the long length of moans here - but just not sure whether this is all the disease? I thought it would just carry on with the flares now and again, which although more painful, were easier to cope with than constant. So any advice anyone can give me on whether this could be normal progression and whether to see GP about hip prior to consultant I would be grateful for. Also dizzyness? Anyone with similar experience? Apologies as I realise this is a bit rambiling, but with the dizzyness and fatigue this is what my brain is like at the moment!! Thanks in advance.

[Paulajolo]

Hi Tracylux, it really sounds like you need to ask your doctor to refer you to Rhumatology Clinic. I started with RA in Jan this year and my doc referred me in March thank goodness. I am hoping its starting to come under control and I can have my life back. I take MTX and Prednisolone at present. Makes me feel a bit unwell at times. Also I have had to change my diet no dairy and Gluten free which means no grains,no red meat. I only eat eggs and fish plus fruit and veg and I use coconut milk. I know wheat plays havoc with my RA. Its tough but seems to help. Hope this helps.

[Barfox]

Hi I was diagnosed 3 years ago and put on hydroxy only. It made no difference so they added prednisolone, all that did was make me hungry. I read up on RA and saw my rheumatology nurse, she agreed with what I had read that you should be on a combination of drugs to control disease, so I was put on methotrexate and hydroxy, which worked a treat for me. Not everyone is the same but contact your nurse or consultant and tell them hydroxy isn't working. Your disease shouldn't progress it should be kept under control. Are you having regular blood tests?

[Tracylux in reply to Barfox]

Thanks Barfox. Problem is I can't get to see my consultant until October! I do think I clearly need to review my medication and I feel the disease is totally out of control - I constantly feel feverish too. That's why I thought maybe seeing my gp in the meantime might get me treatment. I know everyone faces the same wait to see a consultant, but they put mine back 3 months which has prolonged it. I dont think I have a rheumy nurse - no none has ever mentioned one and when I rang to try to get an earlier appt with the consultant, an appt with a nurse was not offered. I guess I'll just have to grin and bear it until October. Just started a new job too and they don't know about it so trying really hard to keep going. Fingers crossed (ouch! )

[Barfox in reply to Tracylux]

See your gp perhaps they can give you something to help until you see consultant or can contact consultant on your behalf. Mention your new job.

[Tracylux in reply to Barfox]

Thanks for the advice Barfox. Now to try to get a gp appointment!

[andyswarbs]

Tracylux, I have been trying out the Wim Hof Method - wimhofmethod.com - for about four days now. This starts out as a breathing technique. If you need some relaxation away from the pain then I find after practising his breathing technique I am very relaxed for some hours. It might help you get through the day? Regards Andy

[Tracylux in reply to andyswarbs]

Thanks andyswarbs. I have read about this method quite a bit recently, I will look into it. Any help is good! Regards, Tracy

[summer32]

go to gp about your hip I was referred to muscular skeletal physio specialist practioner who gave me an injection into the area around the hip joint, a steroid injection mine was given the grand title of trochanteric bursititus

[PJsorefeet]

Hi ya!

sounds like things have not been very good for you, I'm sorry to hear that. I too suffer with fatigue and dizziness. With me it feels like I'm slightly drunk, or hungover and I can't think straight, it's horrible, especially at work. I've had RA for 4yrs, I'm on methotrexate injections and enbrel injections. I'm 33yrs with 2 kids so not thinking straight leads me to be a grumpy mum, not great!

I can remember the beginning horrible phase of getting treatment right, my advice is research before you go into your appointment, take a list of questions and don't leave till they are all answered.

eventually what I'm doing to say next week drive you mad, but pacing yourself really does work, you have to try and even out what you are up to, off load tasks on to somebody else, if you're feeling dizzy, rest a bit, do a bit, rest a bit etc, after a while of making little changes everywhere you will feel better. I do realise that "why don't you have a rest?" Is like red ready to a bull.... Well to me it off anyway because I often wanted to scream "IT MAKES NO DIFFERENCE" but it does, after a while. Little changes add up,

then insist they change you're treatment, you'll probably find the gp won't really help until you have a rheumy plan, and even then they are very reluctant to get involved, but I would call your Rheumy clinic and ask to be put on the cancellation list for appointments, it's always worth a go.

hope you feel better soon

x

Ps in the end my dizziness was in 80% part caused from my meds, I have altered various different combos until I improved it, so maybe you are having a prob with the hydroxy? Just a thought.

let us all know how you get on

[PJsorefeet in reply to PJsorefeet]

sorry for the of the auto correct typos, you get the jist of what I was trying to say.... I hope...

[Tracylux in reply to PJsorefeet]

Hi Pjsorefeet, yes I don't think the gp will do much either but no real chance of getting to see consultant any sooner than October really, so getting s bit desperate! Also getting chest pains now which I can see can be another side effect. Was going to post on hear to see if anyone had any experience of that. In falling apart at 49!!🤕🤕 but thanks for your reply. It's nice to talk to people who are in the same boat, otherwise I think I'm going mad!

[PJsorefeet in reply to Tracylux]

That is a side-effect of RA generally I think, I often feel like I'm going mad. Especially when the pain is fine, but you feel horrible, you start to wonder...perhaps its all in my head? maybe I'm tired all the time because I'm depressed or something?.... but then those loved ones around me remind me, No! its because you have RA! you were fine 20mins ago, now you're not, thats just as it goes.

I think the main thing to try and remember is that just as you can feel horrible, you can also feel fine, for no reason at all. Try to remember that this horrible beast we are all dealing with is an unpredictable thing that comes and goes, so at the moment its really bad for you, but there will come a time, any day soon, when it will go. Fingers crossed that day is just round the corner for you

Not sure if you've seen it already but the spoon theory is a really good read and can be a nice way to explain things to nearest and dearest who perhaps don't get it at times, or try to help but actually say all the wrong things, check this link out........., I think its worth 5mins

butyoudontlooksick.com/arti...

feels better soon

[JudyW5]

Hi Tracylux, I think it's not right for them to cancel your specialist apt and then put you at the end of the list, which is what they have done in effect, so that you have to wait another 3 months. I wonder if you have spoken to the specialists Secretary about this or only to the people who arrange appointments (ie. the number they tell you to ring if you want to change your apt time). I would find out the name of the specialist you have been referred to (ring the appointments people and ask or Google the hospital and pick the name of the top rheumatologist from their website.) Then phone the main hospital switchboard and ask for Mr X's Secretary. That should get you through. Explain to her that you are in a lot of pain and have had your appointment cancelled so please could you be given an earlier one as the one you have been given is 3 months (or more) after your original apt and X months after you were originally referred, and offer to accept last minute cancellations of you can.