Troublesome mornings

I am also on Methotrexate,25mg which I inject once a week,was on other meds but resulted in low white blood count so switched to Methotrexate,plus Sulphasalazine,rheumatologist has indicated they will add another med to compliment it as still having pain and flare ups,fatigue also a problem,oh to be normal for a wee while as there's still so much I want to do.I swim twice a week and find that relaxes me .Commiserations to all Gransnetters in pain.

I have a bad time when I get up from a sleep, be it in the morning or after an afternoon sleep. It's like starting the day all over again and I am in pain enough the first time. I manage to get into the bathroom, go to the toilet, wash hands and then downstairs to the settee where I hope my jug has enough water left in from the night before to take pain killers. I then sit and cuddle my doggie for a while, put on my vibrating warming pad onto my back or wherever is hurting and sit it out for a bit until I can get into the kitchen to get fresh water from my filter system in the fridge. I do the same when I get up in the afternoon/tea time.

I feel totally awful with pain in my back, my legs swollen, my throat tight, no energy, really tired feeling and still breathless. So it's still a struggle, but I am managing even though today has been a particularly rough day all round really. Tears and everything today, not good. Or maybe good, maybe good to start getting some of the tears out at long last. I don't think emotional problems help physical problems.

After I have got my water, I then take all prescription tablets, heart pills etc and my iron medication. Also take my inhalers as and when needed (Brown one morning and night). I'm only 21, how did I end up like this?

Scooter58, I couldn't take sulphasalazine, it made me feel grim. this meant the next drug offered was an injectable anti tnf enbrel/humera etc. They're more expensive so patients have to go through the cheaper drugs first. The fatigue you mention is something I'll never forget, it's difficult to describe just how exhausted you feel when the inflammatory arthritis is active. I could sleep for 9 or 10 hours and wake up feeling exhausted during that period. The injectable treatments changed my life. Yes there are potential side effects, as with all medications but the quality of our lives whilst we're living them is a big consideration. Hope you get some effective treatment soon.

I do sympathise! I was diagnosed with RA in my early twenties (am now 70)and was told "you'll be in a wheelchair by the time you are 40" by a very old-fashioned consultant. I was determined that that would not happen and it never has. RA is very much affected by hormonal changes. Mine went into remission after birth of first son and returned with a vengeance when I was 8 months pregnant with my second son (who was, himself, diagnosed with RA at the age of 17 but, because it was treated so well has no joint deformity). After the menopause my RA was in remission for over 15 years but, sadly, is now active again. I take 2 x Disprin Direct in the morning to get going and 2 more at bedtime plus taking omeprazole to avoid any digestive upset. Also I get sudden flare-ups of excrutiating and immobilizing pain which last for 3 or 4 days. In between times I manage fairly well. I hope your consultant can find something which will help you more.

Wildrose, you have my every sympathy as it all sounds pretty depressing and horrible. You have had some very good suggestions here; perhaps I could just throw in the one of the old Chinese remedy of taking a teaspoon of clear honey and a tablespoon of cider vinegar stirred in hot water once a day as this has been proven to help joints. Evidently the Chinese philosophy is to keep fit people well; to this end they put a lot of their 'medicine' into their food, and the honey and vinegar is the basis of a properly made sweet and sour sauce. If this doesn't do you any good it won't do any harm, but I have it every day and know a few people this simple dose helps.

"Proven" or anecdotally supported, rosina? If it's proven then docs ought to be recommending it in places other than China. It has never been mentioned to me by a GP.

I might give it a go.

Iam64,thank you,yes the fatigue is so debilitating,I get very,very frustrated with it,as you say it is common to wake up completely exhausted.However,as I am on the highest allowable injectable Methotrexate my rheumatologist has indicated that I will move on to the next level of treatment,as you say they are expensive and we have to weigh up side effects,hopefully treatments keep being improved for all of us and future generations.

I ve heard a lot about turmeric lately and have been recommended to try turmeric and black pepper made into a paste with coconut oil and a teaspoonful a day worth a try

Hello again. Sorry for the late response but my hands wouldn't let me type. I was really touched and amazed to see so many replies and I promise to go through all the recommendations again. My daughter is going to condense them for me.
I do see a rheumatologist and am on methotrexate along with hydroxychloroquine. I have taken sulfasalazine in the past but there was no improvement. I see my rheumatologist again in a month or so and my husband will accompany me to back up my tales of woe. Honestly that's how it feels - that I'm so negative these days - I am usually very much a cup half full sort of person but this last few months have really brought me down. I sometimes wish there was more swelling to be seen but I just have pain and it can be so difficult to get this across. The consultant I see is very patient though and he was so caring when he diagnosed the fibromyalgia on top of the rheumatoid disease but multiple diagnoses tend to blur things when it comes to deciding what to try next. He felt my RA was in remission and scans showed no inflammation but the pain is horrible. The tramadol is a good help once it gets in to my system but I don't feel as though I'm in remission at all! I have referred myself to physio to be shown gentle stretches and am managing to use my rebounder gently each teatime as that's when I am at my best. You have all given me hope and so much support - even those who are not familiar with these conditions. Thank you so much. Rose.

A friend of mine is in much the same situation, but has just completed a pain management course at Oswestry orhopaedic hospital and it has transformed her life. She went into it expecting little as nothing has managed to deal with her intractable pain in the past, but it has been a life-changer. She is a different person.

www.rjah.nhs.uk/Our-Services/Oswestry-Pain-Management-Programme.aspx Here is the link. I am sure this must happen in other parts of the country.

The honey and cider vinegar remedy/preventer has been recommended for a long time. Turmeric is the current alternative with many people saying its anti inflammatory properties are helping. Friends are also giving their elderly arthritic dogs the turmeric mixture, reporting it's helping with mobility problems.
I tried all the alternatives but in the end, it was the prescription drug route for me. It gave me my life back. The tiredness/exhaustion that comes with active inflammatory arthritis is difficult to describe, though experienced rheumatologists , specialist nurses and doctors all acknowledge its impact.
Let's be honest here folks, if the folk remedies were as effective as the drugs, there would be no need for us to take the risk of side effects in order to feel anything like 'normal'.

Not necessarily Iam64 don't forget the pharmaceutical firms have every reason to push their products over anything we can find in our cupboards, mostly herbal remedies take very much longer to show some positive help so often people don't carry on long enough Add onto that the fact that very often you have to take more tablets to counteract side effects from the original ones

I m not anti prescription drugs just believe we need to try the ones under our noses first, as you did They do work for some people and should be a lot better for you

Absolutely Bluebell! I have such difficulties with pharmaceuticals as the usual fillers which hold the drug cause me to be very unwell so to avoid this I use whatever I can find in the completely natural route.
I am using essential oils from a very reliable producer which are 100% pure and this has proved to be a real blessing, enabling me to regain movement and have more pain free time. My DH was a total sceptic but since his arthritis has been particularly bothersome recently I have used them on him too and he is a much happier man. He can be fairly described as a convert to essential oils!

I'm not knocking the use of alternatives but for those of us with significant health problems the alternatives won't touch, prescription drugs are life savers. Essential oils are a good part of the treatment along with massage but they won't stop an aggressive underlying disease. I speak as someone with experience.

I think we need to view some of the so-called "natural" therapies as "complementary" rather than "alternative".It is also dangerous to assume because something is herbal or "natural" it is necessarily better for you or safer. Many common drugs today owe their origins to nature but indiscriminate use can still be lethal.
However, feeling in control of your own condition can still boost your morale, "it's MY body and I'll decide what I will do" can be more helpful than everything spiralling out of control.
So whatever helps might be worth exploring, but may not work for everyone.

Alternative/ complimentary medicines can give you the 'placebo' effect and can also react with prescription meds so you are causing more harm than good.

WILDROSE
If you definitely know your blood group I urge you to give the blood type diet a trial, as it may aleviate some of your pain and difficulty.
Some people say it is rubbish, but truly it works for me, and will not cost you any money.
For example, did you know chicken contains a natural inflammatory?
Please do message me for details if you know your blood type.

Alleviate. Sorry.

Recently, suffering from very debilitating back pain, I decided to try Bowen therapy which you will find described in this website. I am still in the dark about exactly how it works but for me it has helped enormously. From being bent double over a walking stick, I am now able to walk upright without the stick - my rheumatologist had even suggested crutches! It doesn't work for everyone and the therapist honestly tells you that if you are no better after three sessions, then it probably isn't for you. I was lucky to find a very good practitioner who is also a conventional physio.

So right, BlueBelle. Many natural remedies are 'proven' by their sustained use over a very long period; it is reasonable to assume that if they were useless nobody would bother. Acupuncture was scorned for years by the medical profession, but my GP has it regularly. The basis of many prescription drugs have natural ingredients - digitalis for one, and trials have shown that St. John's Wort has been as successful in treating depression in some people as prescription drugs. As we are all composed of our unique mix of chemicals, what works for one may well not help another, but trying first a fairly innocuous and well established natural remedy must surely be better than making drug companies rich, given the alarming side effects and the tendency for people to become over medicated taking more drugs to combat these.

Tramadol could well be what's making you feel so sluggish in the morning. I have psoriatic arthritis, was so bad my arms were in splints.dr offered a whole range of really hefty drugs that i wasn't happy about. So I researched every article I could find and now take : omega 3 turmeric, green tea tabs, and quercetin and bromelain.my splints have lived in my kitchen drawer for months now! Could be worth trying, but check with go cos of your heart Meds

A word of warning regarding St John's Wort - this must not be taken by Epileptics so it a word of warning in carefully checking that "natural remedies" are going to be suitable for you, check they won't interact with other medication. However I believe in the use of complementary medicine & believe in trying anything that works. I love massage oils & smell is gorgeous & I believe that helps with your general wellbeing

A dr programme on tv investigated turmeric and found it effective as fresh or powdered, but not in a tablet.
I am wondering why beef and chicken stock is mentioned but not lamb? I grew up on weekly lamb stews (economical in a poor household, bones were often free from the butcher and my sisters and I fought for the chance to gnaw them after the meal! ) and now make my own using lamb cutlets with the usual veg and herbs. Sometimes I cook a lamb shank in a gravy made with a well know stock pot which claims to be made from bones and with no artificial additives. Again I add the usual onions and carrots, sweet potatos, and parsnips, and cook until the meat is falling off the bone so you are getting all the bone goodness as well. As I live alone a stew lasts 2-3 days.
I hope research will come up with something for these medical problems soon, I can only sympathise and applaud those who struggle daily with these symptoms.