Looking for any tips on how to survive(and live a good life)

ImNotFinishedJustYet

Hi

If anyone can help me in any way, i'd be very grateful for any tips.

Having had some X-rays in hospital, having had pain in my feet, ankles, knees, legs, hips, neck, arms and hands for a long while, they have alerted my GP to arthritis.

I have had a blood test and expect my results next Thursday. My GP suggested the test was for Rheumatoid Arthritis, so my diagnosis isn't clear yet, but I do have some form of arthritis.

Unfortunately I also have Graves Disease and Diabetes, so I don't know if that confuses things as of yet, with regards to how I will be treated - medication etc.

Now, it's early as i've not been fully diagnosed yet, but are there any tips with how to deal with arthritis generally? Diet, exercise, bathing etc etc?

I already bathe twice a day - not sure if it helps or not - do Epsom salts work or are they a myth?

Any kind of tablets? I occasionally use a magnesium spray, but does it have a good reputation or is this just a myth?

And Vitamins?

Diet? Certain foods help?

I'm looking for information on the internet, but lots contradict each other.

I just want to feel as comfortable as possible, but with my job in retail, I don't know how long I will survive. I've really struggled of late

Thanks for any hints or tips, I really appreciate any help.

David

[Deleted User]

Hi David,

Welcome to the forum, this is the right place to come for support at the beginning of your arthritis journey.

Here's a link to the arthritis org website - who also fund this forum. The page has lots of info on living with arthritis, diet, exercise, pain management etc

https://www.arthritiscare.org.uk/living-with-arthritis

When you've had your next GP appointment it might be a good idea to ring the helpline to talk through what you have been told and get help with any issues or thoughts, it takes a bit to get your head round and the helplines are staffed by people with lots of training and experience to help you in any/all areas.

0808 800 4050

Take care
Yvonne x

ImNotFinishedJustYet

Hi Yvonne

Thanks for your post.

I'll have a good read of your link and then, when i've had my GP appointment, think about calling the helpline for some feedback.

Thanks

David

frogmorton

Hi David

Welcome to the forums from me

Isn't Graves disease an auto-immune thyroid condition? I heard about it when my brother had hyperthyroidism a few years ago.

I don't now whether it's relevant to your arthritis, but hope very much the DR has your blood results and you know which type of arthritis you have.

To be honest I tried a lot of stuff when I was first showing symptoms, but none really helped.

With all types keeping as mobile as possible is good and if baths ease your pain go ahead. Have you tried wheat bags that you heat in the microwave? Or ice packs??

The osteo type is usually managed with pain relief, maybe physio/hydrotherapy maybe steroid injections into the joints affected or even surgery ultimately.

The inflammatory types including RA require medication to dampen down the disease as well as pain relief and the above. The medications used are called Disease Modifying Anti Rheumatic Drugs or DMARDS.

In all cases keeping moving as much as possible and keeping weight down as much as possible and eating a balanced diet is sensible.

Anyway I've gone on enough!

Keep posting and let us know how you get on

Toni x

ImNotFinishedJustYet

Hi Toni, thanks for your reply.

Yes, Graves Disease is an autoimmune disorder - i'm surprised to meet someone who has an idea as to what it is!

Hypothyroidism is often caused by Graves Disease, but not the sole reason Hypothyroidism could happen. My body does seem to like to attack itself!

I've not tried wheat bags - I don't have a Microwave. Or ice packs.

I keep moving as standing still causes issues. I've lost 2st 2lbs in the last 5 months as I had to because of the diabetes and I aim to lose more. Only 5lbs to go until I reach my maximum suggested weight for my height, so i'm doing well with this one. It means i've had to eat healthily, so i'm giving myself a chance.

Thanks again for your response. I hope my results on Thursday are not too bad.

David

barbara12

Hello David and welcome to the forum
I find that epson salts eases the pain in my feet, I cant get in a bath or I would soak in it..on top of meds I find distraction very useful..anything to take your mind off the pain the more we dwell on it the worse it seems to get...I do hope you can get some answers very soon ..and find something that helps..

ImNotFinishedJustYet

barbara12 wrote:

Hello David and welcome to the forum
I find that epson salts eases the pain in my feet, I cant get in a bath or I would soak in it..on top of meds I find distraction very useful..anything to take your mind off the pain the more we dwell on it the worse it seems to get...I do hope you can get some answers very soon ..and find something that helps..

Hi Barbara

I sell Westlab Epsom Salts in my workplace, so can get discount. Not sure how much they will be for me as discount is based on cost price to the company, not a specific %, so will seek this out tomorrow.

How much Epsom Salt would you suggest from a 1kg bag? I bathe twice a day, so this could be expensive :oops:

Only 3 days to go until I hopefully get some answers and then i'll know what i'm up against.

ImNotFinishedJustYet

Right, so i've received my results.

Whilst the GP was friendly, I figure this isn't her strong point.

The good news, or lesser of two evils- it appears to be Osteoarthritis.

Whilst I am happy that I don't appear to have RA, I have more questions than answers.

I've been referred to physio and told to take painkillers and......that's it.

She said she could send me to a clinic or a rheumatologist but they would only likely send me to physio anyway.

The physio will also only deal with my 'worst' part, my feet, as they only deal with one body part at a time. So knees, hands, neck, hips - nothing.

Is it still worth me calling the helpline? I feel like I have something minor now which I just have to get on with and i'd be wasting everyone else's time, and whilst I am pleased she doesn't think it's RA, I now feel fobbed off a little, yet the pain is very real.

[Deleted User]

Hi,
well I guess the good news is that you now have a diagnosis which is at least a starting point for you, however I am confused as to why the physiotherapist can only deal with one part of you at a time? I'm wondering if you live in an area where you can refer yourself to the physiotherapist, it may be worth investigating this possibility. This would at least mean that you could have two parts of your body treated at the same time. It may also be worth asking the physiotherapists whether they are willing to treat you more holistically when you visit them.

I think it may well still be worth phoning our helplines as they would be able to give you some guidance about how to approach your physiotherapy appointment and possibly get more than just the one area of your body treated at once. It may also be worth discussing the possibility of a rheumatology referral if you feel that this is still a useful option for you. Keep us up-to-date with how you are getting on and continue to ask as many questions as you like that's what we are here for
Best Wishes
Sharon

ImNotFinishedJustYet

Thanks for the reply Sharon.

I'm a little frustrated - i've had physio before and found it useless and the physician was pretty clueless. I can only hope I get a better one this time.

I'm not sure why they only deal with one body part at once. Last time I mentioned it they said one body part per referral, but I can have two referrals open at once, so basically I can see someone about my feet one day and my neck another. Why they can't just accept people with arthritis hurt in many places, I don't know.

I will call the helpline. I just fear the person on the other end will wonder why i'm calling over this diagnosis as the GP couldn't answer many of my questions and I did feel a bit like it was a case of 'oh well, it's age'.

I'm sure the helpline will be useful and I won't be made to feel like it's nothing, but a fear is a fear.

Thanks again.

David

ImNotFinishedJustYet

Hi Sharon

Physio won't start for a good few weeks - such a waiting list, even for those of us who are deemed as most urgent as I have been.

I haven't phoned the helpline yet - i've been a little under the weather this week - unusual for me as Graves' diseasers usually don't get ill (bugs) often.

Thanks for your reply - I will phone the helpline - it takes a couple of weeks for things to sink in normally anyway.

ImNotFinishedJustYet

Well, I had a surprise today when the physio said he could see me this afternoon, so I went along.

He seems to think I need arch support so has recommended me buying some arch support insoles and then if need be he can refer me so I can have some made for me via the NHS.

In the meantime, I have some exercises to do but I need to contact them if I need more help.

I also phoned up the helpline after where a lady was very helpful and she is sending out some literature.

[Deleted User]

Hi David
I am so glad things have moved on for you, arch supports sound interesting, let us know how you get on with those. I am so glad that you did manage to phone the helplines and that you found them supportive, I hope things start to pick up for you
Best Wishes
Sharon

dreamdaisy

Hello, it's good that you have had a diagnosis but it's a shame you are not feeling much further on: I can empathise.

It seems outrageous in this day and age that the treatment for OA is pain relief, maybe an anti-inflammatory med and physio, end of. The latter is not a constant event, it's more a matter of learning to do the correct exercises in the correct manner and carrying on doing them. It won't stop the progression of the disease but it will help to keep your muscles surrounding the joint strong, preserving the range of movement. This could be why you need more than one appointment, it takes time for a physio to do a proper assessment and plan a regime to suit your needs. Yes, we have pain in different places but knees are different to necks, ankles to elbows, hips to shoulders etc.

I am one of the lucky ones who has a foot in both creaky camps. I began with an auto-immune version and the joint damage that caused has led to OA. I still do my post op exercises from 2002, the point being trying to keep the muscles that support my joints as strong and flexible as possible. My rheumatologist ignores my OA and my GP the other. I wish I could ignore both the diseases and the specialists DD

ImNotFinishedJustYet

moderator wrote:

Hi David
I am so glad things have moved on for you, arch supports sound interesting, let us know how you get on with those. I am so glad that you did manage to phone the helplines and that you found them supportive, I hope things start to pick up for you
Best Wishes
Sharon

Hi

To my surprise, I received my arch supports today. They are just generic, not moulded to me personally though.

I also received the info pack today - thanks to the lady who spoke with me. It's quite a big info pack too, so plenty of reading material.

ImNotFinishedJustYet

dreamdaisy wrote:

Hello, it's good that you have had a diagnosis but it's a shame you are not feeling much further on: I can empathise.

It seems outrageous in this day and age that the treatment for OA is pain relief, maybe an anti-inflammatory med and physio, end of. The latter is not a constant event, it's more a matter of learning to do the correct exercises in the correct manner and carrying on doing them. It won't stop the progression of the disease but it will help to keep your muscles surrounding the joint strong, preserving the range of movement. This could be why you need more than one appointment, it takes time for a physio to do a proper assessment and plan a regime to suit your needs. Yes, we have pain in different places but knees are different to necks, ankles to elbows, hips to shoulders etc.

I am one of the lucky ones who has a foot in both creaky camps. I began with an auto-immune version and the joint damage that caused has led to OA. I still do my post op exercises from 2002, the point being trying to keep the muscles that support my joints as strong and flexible as possible. My rheumatologist ignores my OA and my GP the other. I wish I could ignore both the diseases and the specialists DD

Hi dreamdaisy

Yes, I am disappointed that very little can be done and will endeavour to do what I can to help myself, especially as people around me aren't too bothered in being understanding.

I am doing the exercises recommended. They seem so tame though - I don't even know if I am doing them right let alone if they are working.

The physio just said to go back if no improvement in 5 weeks. Don't get me wrong, he was friendly but i've been there before and it's almost an in, out and bye. They don't want to see you for long.

Wow - same exercises for 15 years? Impressive!

I just wish I had people around me for support for any of my issues - none of them take it seriously, yet if they have a chipped nail, I have to stop what I am doing and listen. Frustrating.

dreamdaisy

People who do not have arthritis completely misunderstand what it is and how it affects a person. For them it's an old person's disease (wrong) and comes in two kinds, OA and RA (also wrong). Another setback is the sheer ubiquity of OA, there are around ten million arthritics in the UK and the majority have OA; it's as common as muck but far muckier. In the same way that my friends are not very understanding about arthritis I in turn am not very understanding about MS, a friend of a friend is now confined to a wheel chair but I know better than to suggest faddy diets, drinking more water, using copper insoles or eating dandelion leaves at dawn whilst skipping with fairies (alright, I made up the last one but I assure you it doesn't work without the fairies ).

I know my exercises are 'working' because if I stop doing them for more than a week things deteriorate with my joint flexibility and mobility. Over the years others have been added to help with my Achilles tendonitis (that returns if I don't do those regularly enough) and the range of movement (ROM) goes in my left shoulder if I stop the exercises given after I broke my upper left humerus in January 2014. I don't do them to make things better as others understand better, I do them to maintain what little ROM I have. They do not alleviate the pain but they can only be beneficial.

We're here to take you seriously because we know what you are dealing with. My husband still struggles with the fact that nothing can be done, I accepted that years ago but, unlike him, I have no idea what good health feels like having been born with auto-immune rubbish that has continued throughout life. You don't miss what you never had. DD

ImNotFinishedJustYet

I've found that out. My work colleagues aren't exactly understanding - fortunately I have an Occupational Health Assessment in an hour which I hope helps.

I'll skip with the fairies anyway - it's exercise right?

I am doing my exercises - they seem a little pathetic and don't feel like they are doing anything.

I also have auto-immune disease, though was not born with it.

I'm finding Epsom Salts are working, or maybe it's something else that coincided with me starting using them in the bath.

I also take Glucosamine and all my vitamins. I can only try and help myself.

Will be back later to post how Occupational Health went.

ImNotFinishedJustYet

As a follow up to my post above...

Occupational Health went well. The lady is going to make a few helpful suggestions - we'll see now how it all pans out.

[Deleted User]

that is good news! I bet the epsom salts baths do help even if it's not the salts at all but just that you are relaxing in warm water, and taking some time out. Good relaxation is very beneficial here is a link for you to have a look at https://www.arthritiscare.org.uk/living-with-arthritis/managing-pain/the-importance-of-rest-and-relaxation
Best Wishes
Sharon

ImNotFinishedJustYet

I had an Occupational Therapist report last year and after the appointment it only took two days for my employer to receive the report, so hopefully it will be quick again.

I'm thinking of maybe reducing the epsom salt baths and see if it's ok with just the bath itself - I mean, the only thing i've changed is adding salts, I always have bathed before work, but it could be the salts helping or it could be the weather has improved and the cold was making my arthritis worse - after all, I go to the freezer each day and the cold really messes with my hands.

Thanks for the link - i'll go have a read!