Introduction myself

[Swanky]

Hi all , my name is Simon 48 been suffering for years with pain finally gave in last year and went to doctors. Had blood taken called back in same day saying I had to see specialists as soon as possible as my ra count was sky high and I needed to get on meds straight away. Had a horrible journey so far pain every day but reading posts I'm not alone and that gives me some comfort. Just wanted to say high and thanks for having me. My symptoms are strange and very frustrating I feel I am not getting the right help to move forward. Have posted below if any one can offer advise that would really help me I feel so alone with this at the min it is driving me crazy.

[nomoreheels]

Hiya Simon & welcome. I'm pleased you've found us, it seems you'll benefit being here. It can be difficult to know especially if you've no contact with anyone else with RD what's acceptable with the disease & what's not so hopefully you'll find that help here.

I'm not sure what you mean by posted below so will have a search & see if it's anything we can help with.

[Hidden]

Hi Simon. Just found your other post describing the strange symptoms.

There are no easy answers but you made the first step in finally going to the doctors. Such a simple step on the face of it, but surprising how difficult it can be! For years I just assumed my symptoms were way too weird and woolly to see a doctor about, plus I assumed they were all in my head or due to laziness .... etc. etc. etc.!! So you've DONE GOOD!

What treatment are you on? It can work really well, though usually rather slowly. Then there's the challenge of not beating yourself up for being in this predicament, that's a tough one too, but worth taking on because I reckon many of us do surprise ourselves in terms of how well we adjust and adapt and even find really good aspects of our characters that we never knew existed during that 'journey'.

6 children eh? Wowzer! I presume you don't really get a moment's peace? It might be an idea to think outside the box as much as possible about where and when and how you can squeeze in a little rest, a little exercise and the best nutrition possible too. My mum had MS really badly. And you know what, cooking and cleaning from an early age didn't do me any harm. My only regret is that she didn't take the bull by the horns just a bit more, it wasn't her fault she couldn't move much but she had such a good brain and could have focused more on organising our lives and less on feeling guilty. Sounds harsh but the tough bits for me were the emotional areas, not the work and responsibility that came my way. And in any case, it's very unlikely (from what you say) that things will ever be that bad for you. You're at the beginning of what could be a much better life .... though I hear you on the very real challenges you face.

[Swanky in reply to Hidden]

Thanks postle2 for the reply my meds are as follows. Naproxen, codeine,lansoprazole,methotrexate,hydroxychl, and folic acid with the odd injection of steroids in my bum. Been telling rum specialist the tablets are not doing much as not sleeping well so now on amitriptyline also now. And yes took ages to go to docs as i thought it was all in my head so had this years to be honest started with what i thought was a ham string injury how wrong i was then random groin pains then feet then 1 finger felt like it was broken and so on thought i was a hypo as i looked fine ! Now so tired all the time meds are rubbish for me and more pain weekly with new stuff added they think i might have fibro also brought on from RA at wits end 😔thanks for your help. Regards Simon

[LizzieR]

I can't see your other post, but welcome. There are lots of lovely and knowledgeable people here x

[Swanky in reply to LizzieR]

Thank you Lizzie very helpful.

[ravizza]

Hi all. This is my first time posting, but I just could not ignore this subject. I was diagnosed with RA back in the 1990's. It started in my arms then shoulders, then legs and ankles then all through my body. I was a total invalid for about 4 months. My husband had to brush my teeth (I could not lift my arms) and feed me and do all the necessary things to keep me clean. i was on all types of meds including Viox which did really bad things to my heart and then it was taken off the market. I suggest that you do some research on the meds you are taking, as some of them can be bad for you. I ended up on Hydroxychloroquine and that helped as I got quite well and all the symptoms disappeared. Last year I went to see a rheumatologist at St. Michaels Hospital in Toronto and had blood work, xrays, the lot done and returned there to get the diagnosis. What a shock to be old that i had never had RA, that it was possibly some sort of autoimmune attack and to stop taking my medication right away. I had been taking these meds for about 26 years! unbelievable! i am totally free of RA, I do have some slight Osteoarthritis, but am doing well for an 84-year old lady. I am afraid I have lost faith in some doctors as they just hand out pills and if that does not work, then - try this new one. I am also on LDN Low Dose Naltrexone which works for ALL AUTOIMMUNE DISEASES and would recommend looking into that, also for people who have MS. It does not cure it, but it stops it in its tracks so that you do not become an invalid. To learn all about LDN just google LDN or low-dose-naltrexone. It is not covered in Canada, but I understand that they were trying to get it accepted on the National Health in Scotland. It is gaining attention world wide. I wish you all good health!

[Swanky in reply to ravizza]

Great post ravizza can't believe 26 years u must of been shocked to get told that ! Best of luck to you and thank you for passing over your knowledge here to help others x be well Simon x