I'm getting worse as every day passes by! - Arthritis Action

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I'm getting worse as every day passes by!

Nytsom profile image
16 Replies

I need some help and advise.. I cannot believe that this is happening to me! I've gone from Athlete to invalid in less than two years. I can barely walk.

Saw the Rheumatologist last week; he showed me the X-Rays of my Hips,, knees and ankles; they all show signs of degenerative Osteo Arthritis. I asked if I needed hip joint replacements? he said he had seen a lot worse; and didn't think they were at a stage of needing to be replaced, he also stated : He couldn't understand why I was having so much trouble trying to walk; even though I cannot put any load-bareing on my limbs. had a few more X-rays done and he's referred me for a Body Scan.

I'm finding it difficult to understand this disability; I'm taking all sorts of vitamins and supplements to aid a healthy body; and some herbs to reduce any swelling; also painkillers. I'm at a stage where nothing seems to help; and each day is getting progressively worse!

I sometimes wonder if there is something else wrong with me, apart from the Arthritis and Pernicious Anaemia? I'm struggling with my mobility. Does anyone know of some kind of pain relief guaranteed to help me walk properly?

Any help or advise appreciated

N

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Nytsom
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16 Replies
Rileytra profile image
Rileytra

Morning N, this might be a long post and similar to my others so I'm sorry. This may not work for you but here goes . keep walking I know hurts but it's hurts so much more if you don't. Start small really small end of path/ road and back. Rest elevate ice and / or heat. When you move listen to music . you will be moving and focusing in on the pain waiting for and anticipating the pain. Distract your self!! The pain cycle works like that. Even though you take pain killers you will be waiting for them to take effect then wear off .take your pain killers half hour before you walk so you know its no going to hurt. Talk to Dr about pain management clinic. Go to my favourite people the Podiatrist check your gait. It will get better. Dom 87 has a similar problem. Good luck let me know how you are getting on. Ps strong pain killers didn't work for me. Can you tell

Nytsom profile image
Nytsom in reply toRileytra

Hi Rileytra,

Walking any distance; even short distance hurts. I (like you) walk as much as possible; but the muscles are already deteriorating. I'm not the type to give in; and will continue to fight agains this disability as long as possible.

I've never been a tablet taker; and find painkilling drugs have all sorts of side effects; so it's a minimal approach to painkillers for me.

Seems we have a lot in common.

Regards

N

Rileytra profile image
Rileytra in reply toNytsom

Evening N, I refuse to tick the disabled box I'm just less able to do certain things than I used be ;) the hardest part was to admit to the fact I'm not a fit and able as I used to be. My goals are much smaller but I now know my limits.it took a few years of trail and error. Do too much and take strong pain killers do to little and get fed up. Eventually I found a balance its not great but it's mostly pain free with rest days planned in for after the times I need to push my self. Don't use what you used to be able to do as a measuring stick to judge what you did today. It doesn't work .small achievable goals work better.life is different but not necessarily worse. T

deejames profile image
deejames

I m afraid that Osteoarthritis can't be stopped and the pain can't be eliminated. A hydrotherapy pool can help to keep muscles from degenerating whilst protecting the joints. Any chance you have one near you.

I have osteoarthritis in my lower back and sacrioilic joints. I use cannibiniol ( medicinal cannabis with the THC removed) . It works well for me but is not cheap. It helps to reduce inflammation and therefore pain but nothing makes me pain free and on the worst days even the oil has no effect.

You sound quite young. My problems started around 45 but I suspect my vertebrae had started to degenerate before then. I managed to use exercise to keep my back muscles strong and therefore confine myself to occasional bouts for disability. Then my bike hit a van and it was downhill after that.

It will be hard for you not to mourn your old life and really miss the thing you could do. I'd suggest trying to get help to deal with those feelings if they come. Have you been referred to a PIn Management clinic ?

Dee

Nytsom profile image
Nytsom in reply todeejames

Hi Dee,

I'm 67, years young and until this disability; I competed in lots of marathons and triathlons over the years. Did some water ski-ing , loved fly fishing on the rivers and streams of South Wales. Wife and I also love ballroom dancing.

I began bicycle racing in my early twenties; and progressed to all kinds of athletics from there on.

I now struggle to walk. I'm taking all kinds of vitamin supplements = B supplements - Glucosamine Chondroitin, Turmeric capsules - Magnesium, Vit-D3, etc...

painkillers don't work for me either; although the occasional Ibuprofen helps reduce swelling.

Physio dept, at local hospital have suggested hydrotherapy ; going for first session next week.

deejames profile image
deejames in reply toNytsom

I relate. I'm 65 and up till 2 years ago it was hill walking, mountain biking, gardening gym classes. Now a walk to the shops is sometimes not possible. I do stretches every day but even the hydro therapy pool is too painful.

How about building up your upper body strength ? That might give the same emotional satisfaction of pushing the limits and could be useful if your lower body strength is weakened. I do a little bit but you would be amazed how much the lower back is involved in most movements the body makes. See it could be worse. I'm on slow release morphine all the time now and that is bad news.

Good to meet you though nytsom.

Good luck with the hydrotherapy.

Dee

Nytsom profile image
Nytsom

Hi dee,

I understand how you feel; so frustrating, when active people succumb to disabilities that affect our mobility in such a severe way. It's a bugger; and so annoying.

Good to hear form you; hope you find something suitable for the permanent relief of painful movement; and increased mobility.

Regards

N

Debbiemade profile image
Debbiemade

Hi, I dont have arthiritis but have similar chronic joint & muscle problems with very similar profile so the things I write may not be entirely correct but...

Try breathing exercises, waaaay better than I gave them credit for, great distraction & helps sleeep.

Have you tried kinesio tape, also much more effective than expected

Learn to pace yourself (i wrote this in 3 bouts). I thought this was fobbing off mumbo jumbo on the part of the NHS but after 2 years of embracing proper pacing I can do much more than I ever thought I would be able to do (or could do 3 years ago)

Learn about weather low pressure = need to be much more careful

Find away to stay involved in what you love if you can. I cannot do physical activity much but I write for a bythe minute sport account when my hands let me on twitter, met loads of amazing people (lots of injured/retired ex athletes who know a lot about body & pain management!!)

Start to revaluate your knowledge, if you cannot use the body as much, how can you ise your mind. You must have tremendous knowledge & experience, maybe in the future when you pain is more managed (that day will come) speaking? Coaching? Writing? mentoring?

Try audiobooks & podcasts along with music for distraction, you can learn an awful lot lying on your back with heat & ice packs all over you :) and I find the words etc more engaging when I am in pain & trying to relax

3 years ago I felt just like you, i was 40, had to leave my job (headteacher, just qualified & then got too ill to work) and was thoroughly pissed off. I couldnt imagine controlling my anger, frustration, sadness, lack of worth etc etc. But now 3 years on I am coping. I am doing things & enjoying them. I understand myself better than I ever have.

And all of a sudden I find I have advice to give. Life changes. Yours will move forward & you will find a way of living (not just surviving).

Good luck, Debbie

Nytsom profile image
Nytsom in reply toDebbiemade

Hi Debbie,

All you say is quite sensible, I'm a great believer in alternative methods for pain relief. I was an athletics coach for many years; and the breathing exercises work well, because your putting more oxygen in to the brain; which in turn increases the blood-oxygen levels and eases the pain in your limbs .

Mind over matter and the old saying for sports people is : no pain no gain.

I use quite a number of vitamin supplements for reducing the swelling in my joints, I've also started taking Glucosamine Chondroitin Capsules; I've only been taking them for about a week, although, I have noticed some improvement already.

Hope you find something to ease your suffering.

Regards

N

Lynne8570 profile image
Lynne8570

Hi, Have you heard of the Turmeric User Group on Facebook? Suggest you join it as there is alot of help and success stories on there. Most people have success with the Golden Paste recipe of turmeric, coconut oil and black pepper for treating all types of arthritis. :))

Nytsom profile image
Nytsom in reply toLynne8570

Hi Lynne,

You guided me to the Turmeric site. I'm on there. I've just received some Turmeric Capsules from Roy Webb, and in the process of making up some GP. Hoping it will help?

Lynne8570 profile image
Lynne8570

Hi,

It has helped me greatly and lots of people have reported feeling so much better. You may feel the benefits as early as day 3 but for most people its a couple of weeks. Do hope it works as well for you x

Nytsom profile image
Nytsom in reply toLynne8570

Thanks Lynne,

I've also read good reports of the use of Turmeric; hope it works for me also.

Regards

N

Lynne8570 profile image
Lynne8570 in reply toNytsom

Hi, just make sure you get the organic turmeric as it needs to still have the curcumin in it. Also the coconut oil needs to be organic or extra virgin. Good luck.

Normadee profile image
Normadee

Hi, sorry you are feeling so rotten. I also was fit for my age, I think you may be younger than me. I also was frustrated after my fall I expect to start feeling better and get back to my old self, I was angry that I was not improving the doctors never told me I was not going to get better, when I was told I was so relieved as I thought it was my fault that I was not improving. He told me to rethink my way of life do tasks slower rest when necessary nothing will make it go away and try to deal with th pain and lack of mobility. It is not easy and because maybe like me my friends said I look so well it's harder because I don't feel well. You will have good days and not so good days make the best of what you have, that's what I try to do. I find the Fentanyl patches for the pain as I cannot tolerate codeine and Tramadol when the pain gets really bad. It takes time to find the right meds so talk to your doctor and ask about being referred to a pain management clinic. Be careful about over the counter supplements they don't always mix well with your other meds. Hope I have helped

ShirleyG profile image
ShirleyG

I know how you feel - I am struggling to get work and when I get it hold down a job. As I do not officially retire for another 7 years this is going to be a financial problem for me. I have problems of pain in my legs, knees,neck and thighs. I just wish I could find a supportive employer who would understand. All the best - keep in touch

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