Inspiration needed!

stremlett

Hi I have posted before on the forum, in December I suddenly became ill with arthritis affecting my hands my shoulders my knees and my feet, together with flaky skin, conjunctivitis and carpal tunnel syndrome. While investigating the symptoms they found I had an enlarged heart. I was hoping that after diagnosis I would be given some sort of disease modification treatment. I didn't think that osteo could attack both sides of the body at the same time, suddenly and with considerable 'ill' feeling. It seems that I am going to have to pick myself up and to learn to live with it all, there is no solution offered at the moment, (carpel tunnel tests cannot be done for another nine weeks).

The most devastating aspects for me what's to be told that I had MILD arthritic changes which has led me to be very afraid of what's coming next. Now I am stiff to the point of almost immobility sometimes, I need pain medication most of the time and I awake about 5 times a night with severe hand pain. The doctor has warned me I cannot stay on these pain medications long term.

I'm now looking for groups to join to try and handle things in a more positive way. I have found 2 suitable groups in Nottingham run by arthritis care and would be very interested if anyone knew of any other groups for disabled exercise or social get-togethers?

I am lucky that at 68 I don't have to work as I cannot imagine how hard that must be. Please let me know if you have any thoughts or suggestions :-) Sue

daffy2

Hi Sue. It's difficult when so much 'goes wrong' suddenly, especially if you find that it's up to you to find a way through. The AC groups may well provide the information you want about other groups but public libraries, council offices, Citizens Advice Bureaux are other sources for what's on in your area. Age UK might also be of help, look online.
It's galling when you are feeling so unwell to be told that the arthritic changes are mild, but there is no direct correlation between what's visible on an Xray for instance and the pain or difficulty a patient experiences - due in no small part to the fact that as humans we are all different and our reactions and perceptions are also different.
Has a referral to a pain clinic been mentioned? If not it would be worth raising it with your GP especially if the long term use of your current meds is not an option. There is a lot we can do to help ourselves apart from drugs, and sometimes things such as addressing the emotional issues or using distraction are just as important and useful as finding the right pills.
Picking yourself up and learning to live with it is a good approach but it can be a hard and sometimes dispiriting task, which is where this forum comes in - keep posting!

stremlett

Thank you for your lovely kind reply Daffy2. Yes it was shocking at first and I was convinced that it would just go away in a short time. I looked around me and I'm sure that most of my neighbours, friends and family have similar or worse things to deal with and that I had no more right to wallow as my situation was no tougher than many.

Really most of my problem is that I don't believe the diagnosis, however as my husband has pointed out it doesn't really matter what they call it, we have to cope with it. He also reminds me that the rheumatologist has not given a final statement, it is the GP who is dealing with me. There are three separate issues going on at the moment and if we can improve each one over time things will be much easier. For example my doctor has prescribed medication to reduce the number of times I wake in the night with carpal tunnel syndrome pain. The world looks a different, miserable place after 5 weeks of greatly reduced sleep but now that I'm getting better nights I no longer feel as if I have flu :-) Cutting the Coco tabs to four a day from twelve has sorted out the constipation problem so hitting each symptom seems to be the best way to go. I don't want to lose the naproxen but I understand that somebody with potential heart problems shouldn't be taking then really.

I'm fortunate that I am an experienced meditator and this has proved useful in dealing with multiple miseries and I can dial down pain for a time. I'm also getting individual help from my teachers. Thanks for your advice, I'm not doing well on online searches so may need to start phoning. Meanwhile, from next week I shall try to get to the pool and hot tub though I have problems with the bus :-) Thanks again, Sue

barbara12

Hello Sue
I always say the same, so glad I was retired when arthritis struck..if I was you I would ask to be referred to a rheumy if you haven't already..and make a list of any symptoms you have even the smallest ones..and make sure you make yourself heard when seeing your GP., get over to them the pain you are in and the effect on your life....I do hope you get some help very soon ..good luck

daffy2

As you have found Sue not everything can be found on the internet! The kind of groups you are looking for may be pretty small and informal and so a web presence isn't felt necessary - the age old pre-internet version of 'someone who knows' or word of mouth serves well enough.
It reminds me of when I was looking for tradespeople for renovating my house - there were plenty out there as I saw the vans around, but they weren't in Yellow Pages or local trade directories and didn't have websites - so I had to keep asking around and keep a pen and paper handy to jot down contact numbers(not always easy in the car....)
I can sympathise with the doubt about diagnosis as I found myself in a similar position. However having had various tests, xrays, and an ultrasound scan of the most 'anomalous' joints done, and getting more used to what is going on I have decided to accept the OA conclusion and work on doing what I can to deal with it.
By all means keep pegging away with the medics if you are not happy with what you've been told, but be prepared not to get as conclusive an outcome as you might wish. Your current approach of dealing with the problems that you can do something about is a good one because anything which can be made a bit less troublesome will make dealing with the unresolved problems a bit easier.

hileena111

Hi Sue
Like you......I'm so glad I was retired or just retiring when arthritis really hit.
Have you gone to any of the groups that you have found?
They may be able to help point you in the right direction.
I belong to our arthritis group and feel lucky to have a local one {well about 30 mins drive away } but its the nearest. Some people don't have any. This is an official Arthritis Care group with funding etc but there are also smaller ones that aren't official. They are groups more like coffee mornings/evening. They don't need to have a secretary or a treasurer. Not sure about the actual differences. We had one close to us and it isn't official now but they meet every month. If you go to any one you find see if they can signpost you to somewhere else.
It must be awful to have so many things that don't seem connected. I think it does help to have a name attached to it. At least if you know you have arthritis you can find out what to do about it {self managing} its harder if you don't have a diagnosis
Good Luck with your search
Love
Hileena

stremlett

Thank you Barbara, Daffy and Haileena for your helpful replies. Of the six potential groups that I have found three have been cancelled for various reasons, so I have emailed to see whether the group I would like to visit later this week is going to run. I don't want to struggle with the bus and then find it has been cancelled! These days I get rattled rather easily :-(

I was talking to my cousin who has faced some horrible health dilemmas recently. I was saying how self-absorbed I've become and she laughed and said "At first your life becomes so small and nothing is as important as what's facing you at that moment but after a while you either get better or you come to terms with it all, life begins to be wider again". You know, that was lovely to hear.

I'm so delighted to have found this place. I've had some wonderful advice about sneaky ways to manage day-to-day and also arthritis aids but probably the best advice what not to Google my test results, but instead go to reliable sources of information. I'm so tempted LOL.

May we all have a lovely week, the daffodils are coming into bud. Sue

hileena111

Hi Sue
That advice from your cousin was very good. I think she is right

Love
Hileena