Private consultation : I am so glad in many ways I paid... - NRAS

NRAS

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Private consultation

Deeb1764 profile image

I am so glad in many ways I paid to do the spinal consultation as at least it’s made me feel calmer but also I now have a better understanding of what is going on too.

The great news, is though I have degenerated discs and bulging discs it’s part of life and nothing that needs work on. The base of the spine is not great but he felt if I could build up my strength again ie swimming and sitting Pilates or yoga I could assist this part.

The nerves though impinged again in lower back are not at a level he would do anything about either.

The good news he sees no arthritis in the hips. However watching me walk and discussing my bone on bone knees he feels all my issues lie within my knees and the pain is travelling from knees and knocking out my gait and alignment. So again discussion on building strength and keep Losing the weight as his words” you need to be within a range for them to actually do the op so work on this if anything you have the time”

What was great was his empathy for autoimmune people the struggles of activity vs the disease and how hard it must be to try and battle movement with fatigue and joints etc. as he said damned if you do too much damned if you don’t.

So agreed I will up movement as much as I can and he acknowledged that me working the past 8 weeks and losing a stone shows that many autoimmune people put on weight due to sedentary lifestyle not overeating. In fact it was nice to hear that we are accused of over eating when in fact it’s the fatigue and drugs and sedentary life and not actually eating that much that causes a lot of issues.

So I left happier as it’s not cauda equine and my back is not melting it’s my knees and therefore I need to work on this next!

I know the pain won’t go away but at least I know what is going on and why and that is a relief as we get so many unanswered questions with autoimmune that it made a change to come out with facts for a change!

24 Replies

Good news Dee and as you say getting a full explanation of what is going on in your body is very useful. I've put on 1 and a half stone since my health issues have spiralled over the past 9 months or so. It is so difficult to stay a healthy weight when you are largely immobile.

Great news that you have lost a stone.

Deeb1764 profile image
Deeb1764 in reply to Mmrr

It’s that 30mins of discussion being listened to and being told how your knees are knocking out your hips and spine and just calms the mind!

Yes re the weight told working 25hrs a week kills me on fatigue but then helps Lose the weight!

You had done so well re your weight loss too it must be so frustrating. x

Mmrr profile image
Mmrr in reply to Deeb1764

Are you working?I'm eating the same, it's the immobility, can't eat much less.

Deeb1764 profile image
Deeb1764 in reply to Mmrr

Supporting hubby he cant get staff in hospitality so I am helping out on desserts and management but I am shattered but the mobility is helping the weight loss!

Glad your consultation has put your mind at rest. You were needing that. Hopefully you will be able to find a good teacher or instructor with an understanding of your problem who can help you exercise. I think knowing what your problem is and what is causing your pain goes a long way towards helping live with it. It’s the unknown that is the most scary - in my case the imagination goes inti overdrive. Good luck with it all.

How reassuring on many fronts (especially back!) and to have such a sympathetic and understanding consultant to advise you.

It’s good to hear that it’s the drugs and sedentary lifestyle forced upon us that probably causes weight gain - I know uncontrolled RA and needing Prednisolone has caused my recent problem and hope I can get off it again now Rituximab is beginning to work again. 🤞🏻

Sorry to hear your knees are so bad - are you on the waiting list for surgery? I’ve been taking a high strength glucosamine complex and I do think it helps a bit, together with the topical capsaicin cream. Hope you can find something that eases your pain a bit too. X

Deeb1764 profile image
Deeb1764 in reply to Lolabridge

Nothing has ever worked on the knees had keyhole about 14years ago but convinced it made it worse. On a list for knee referral but…….

Glad to hear of an empathetic spinal surgeon. Doesn't it make you feel better!

I've just recently seen one and was also impressed by the care with which he explained and showed me on the MRI the three discs and where they were impinging on the nerves, as well as the thickening and narrowing of the spinal canal. He's planning on injecting the level that is most painful, but said with a smile that he would operate on the stenosis at any time as an emergency if I loose the sensation in my legs or control of my bladder permanently.

I came away feeling that I was in competent hands, not, as I often feel, that they don't know what to do with me!

Deeb1764 profile image
Deeb1764 in reply to oldtimer2

it was like a face to face hug and sometimes this is all you need that its not all RA just age and OA knees!

Glad to hear that you had a really good consultation and you are happier. It is definitely true that when you know what you are dealing with it is easier to cope with. I hope your pain decreases with your exercise regime. Well done you.

It does make such a difference to be heard. I had an appointment yesterday too and the doc and students I saw seem to be proactive in trying to get to the bottom of my issues it seems I may have osteoarthritis too probably in my hips knees and ankles they were all X-ray’d yesterday and I came out of X-ray virtually in tears coz the pain was so bad. I have to say that I didn’t want to be at rheumatology yesterday but was desperate for some help but I did feel when I left that I had feelings of being a fraud and needing to grow a pair so to speak but I can’t believe in hindsight how caring and thorough they were as I spent over an hour with doc. I suppose I just didn’t want to hear that they think my current issues are down to osteo maybe from unmedicated RA inflammation or maybe not ?? Very pleased that your appointment went well and it gave you some peace of mind.

Deeb1764 profile image
Deeb1764 in reply to Leics

My OA plays up and when it does it knocks me sideways! I do not find any medication I take does not calm it unfortunately but steroids! Having the time to go thro things does make a difference to a 10mins speak as fast as you can and try to make your point without rambling. x

Leics profile image
Leics in reply to Deeb1764

I did feel sorry for others having to wait in waiting room coz I was so long but I know what it’s like. They’re a bit worried about my joints as they’re so inflammed atm but gave me an ultrasound too on most of them and he said I wasn’t showing the usual RA inflammation so I’m stuck with this feeling that I’m a wimp but know I’m not. They’re ringing me to see if depo has worked this time and have to say it’s a bit easier today so that’s positive. It will perhaps be my next port of call to try the private route if I don’t get some answers coz I won’t have any meds until results are in.

I am so pleased you have had such a positive private consultation Dee. Very much needed. The difference that having things explained to us and being listened to is huge. I am so pleased you now know what is going on with your body and although causing a lot of issues for you, you don’t need any major surgery. You have enough going on without anything else. Weight is a battle for so many of us due to our mobility and general well-being being so affected by our health. I am struggling with my weight again now as I am much less mobile due to inflammation and lack of mobility with my knees, ankles and tendon inflammation. We do the best we can with what we are dealing with and need to remind ourselves of this and be a little kinder to ourselves don’t we. Gentle hugs xx

It was nice to feel I did not have another battle to fight. The knees I have always known were shot to pieces and I knew getting an op would be a long long wait so mentally ok with it BUT I have to say the shock waves from knees to hips and lower back is strong enough to push with GP soon but will keep on trying to do what the spine chap advised and g from there!

That was so positive, in a way. It was refreshing to read that not all people in the medical profession believe that that if you have an autoimmune disease you put on weight because of your sedentary lifestyle and not because you eat too much.

Deeb1764 profile image
Deeb1764 in reply to helenlw7

He actually said most autoimmune people tend to eat less as they lose their appetite and get such an unfair rep over it all! It was refreshing to hear him talk. He then added unless of course you get high levels of steroids and then all hell breaks lose for a while!

helenlw7 profile image
helenlw7 in reply to Deeb1764

That’s me - high levels of steroids for a long time so I’m now steroid dependent

Deeb1764 profile image
Deeb1764 in reply to helenlw7

I have been on steroids since first diagnosed with RA as I prefer oral steroids but kept getting chest infections and the only thing that works is steroids. Plus I hate most drugs ie reactions to them and steroids kept pain down whilst we found a drug to calm the RA slightly.I take 5mg every day then if I need more 10mg but chest infections I have to go to 30mg for a week

helenlw7 profile image
helenlw7 in reply to Deeb1764

I’ve been on various doses since diagnosis in 2004. I’m on 10mg a day now but when I had chest infections it was 40 mg. For the last 5+ years I’ve been taking, an antibiotic, azithromycin and I’ve only had 1 chest infection in that time.

Deeb1764 profile image
Deeb1764 in reply to helenlw7

yes i have been given back up antibiotics so if I feel something is happening I grab them and so far this system works the best and hardly need the antibiotic now.

Hello Deeb, I'm very glad to hear your news. It must have come as a big relief and now you have something to work with and towards to. If and when you get to have new knees, let me know. I had the experience and may have a few tips for a good recovery. Lots of gentle hugs.

Waiting for spinal op after having go private for consultation too, caudia equinus. Hope you can enjoy safely swimming it really is good in so many ways. Good luck.

So glad you feel more enlightened..well done on your weightloss that's awesome. Goodluck with your exercise plan 💪I sympathise.All the meds steroids etc and as you say compromised mobility make for bigger bootys. Doesn't help with the joint situation..all catch 22..Keep at it 😊..have a good weekend xx

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