Troublesome mornings

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

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.

"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.

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.

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.

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.

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?

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.

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 agree about how useful the hand supports are. I've been using the Imak arthritis gloves for years and they're brilliant. They give gentle compression without being heavy and combasome like splints so you can get on and do things with them on and wear ordinary gloves on top in the cold. The same company also does ones for feet/ankles. They're available on the Internet so worth checking out.

Mary59nana,
I was terrified when I read the list of possible side effects for patients taking methotrexate. I spent 4 months worrying, researching, talking to my GP before I asked him what he'd do in my situation, he said without hesitation that he'd take the drug. I've had no side effects in over 20 years, liver function is fine and the monthly blood tests keep an eye on everything.
I'm also now on enbrel, which was a life safer frankly.

annodomini, I had discussions with my GP s and rheumatologist about diet. Their advice was that there is no evidence that taking/dropping certain foods affect the disease but, they stressed that it's so individual. They suggested that if I found certain foods (acidic and dairy for example) made my joints, other symptoms worse, to take notice of that and make dietary changes. I'm careful about red meat and avoid red wine. I eat in Chinese restaurants or take aways and never use ready made sauces if I'm making a stir fry because something in the ingredients make me feel rotten, into the following day.

A physio who used to treat me and who had psoriatic arthritis, told me that she had used a diet that precluded tomatoes and (I think) cheese, among other things. She said it had worked wonders for her

Iam64 I'm glad to hear that metharexate worked well for you also.
When I read the list of possible side effects I was very worried but it's been a god send also forgot to mention I also have embrol with my Methatrexate

Oo-er, I hope not, jal. They are pretty acidic though. Is it acidic foods that affect your joints?

It does sound delicious but I am wondering if tomatoes are giving me sharp little pains in my joints?
I should keep a food diary

Especially since we have a glut of tomatoes at the moment

I made the best tomato soup ever yesterday. Had some today. It contained: beef bone stock (lots a gelatin; awesome stuff), some leftover mince and veg, some leftover egg noodles, a can of chopped tomatoes, and a hefty squirt of tomato purée. DeeeeeLISH!

Have you seen a Rheumatologist wild rose? I have inflammatory arthritis and other auto immune conditions so I do understand the impact of persistent pain and the exhaustion that goes with it. I was finally diagnosed in my mid 40's when the rheumatologist took a medical history and concluded mine was triggered by an auto immune disease in my mid 20's. Like one of the previous posters, I was initially prescribed methotrexate. I feared taking it, the list of possible side effects scared me but within 4 weeks I could do a two mile walk, something that I'd not managed for a few years. I'm now prescribed other, more expensive medication, without which my mobility would be severely restricted. If you haven't seen a Rheumatologist, ask your GP for a referral. If you have, ask to be reviewed as your situation has changed. Best of luck. It's so debilitating isn't it

Wildrose, have you tried epsom salts baths? Epsom salts can be bought in bulk: you need about a mugful, then soak for at least 20 minutes. Don't use soap till after the soak but you can put a few drops of lavender oil in it. Magnesium can be absorbed this way and magnesium in any form is good.

I would guess you may not be able to get in and out of a bath easily? I have some issues, which I solved by buying an in-bath seat. I can sit on the seat, which gets me half way down, then manouvre off into the bath, for the rest of the way. I then reach behind me and carefully lift the seat and hang it on the edge. I reverse the process when I get out.

If it is osteo in your hands, you could try Flexiseq gel. Don't get it from Boots - try Amazon which is miles cheaper. It is likely to provide some relieve in about 2 weeks. There are lots of natural products and pills, but some will clash with your meds, and also be expensive.

Regarding Tramadol, it is one of those evil drugs that BigPharma lied about. It is unbelievably addictive. It could increase your fatigue, but I would not attempt to stop it until you have built up your resources. It also acts as an antidepressant, so from that point of view it may help.

It's quite important that you do something about your situation, no matter if you can hardly do ANYthing. It helps you not to feel a helpless victim when you take some kind of action yourself.

Sorry, I don't have any answers, but I do feel for you. I hope you can find something to help you.

The wheatbags are useful, but the best thing I found for my hands is the hand supports, they really help with pain. I had the basal joint surgery on one hand which has improved it a lot, but not completely eradicated the pain, but improved it considerably. I may be driven to have the same surgery on the other hand soon. Try the hand supports, they do help.

You can buy Collagen from Health Food shops which give the same gelatine content as bone broth. You can also make your own version by stewing up Oxtail with vegetables in a pressure cooker and making delicious dumplings to simmer in the top at the end. You can make quite large quantities of this stuff at very low cost and freeze it up in portions. Full of nutrients and very good for you.

I have recently had a really bad flare of O/A in my knees and I thought R/A in my feet. After discussions with the gp 10 weeks on he went through all my notes and apparently my hands and feet are also O/A although I had been told R\A by a consultant. I know that the pain is dreadful and my grip has gone completely, some days I can't fasten a bra let along open a bottle. What I do is simple stretches to keep the mobility - I have a booklet from Arthritis Care and the rest f the time manage as best I can I would love a bath but can't manage that - showers aren't as good are they/ Hope you can find some way of controlling the pain

Don't know if this would be useful to anyone out there but feel I should share my story. Rheumatoid arthritis has affected so many members of my family (gran was made wheelchair-bound & Dad's hands were really twisted) and I started developing symptoms myself. However, 30+ years ago I made the purely accidental discovery that I was allergic to the preservative sulphur dioxide (check out 'E' numbers). I now know when I have inadvertently eaten/drunk/taken something containing it because I wake with severe aching pain in back of knees (similar to tooth-ache). I've learned to check packaging but have learned that small amounts in fruit juice/wine etc. do not have to be declared. Although vegetarian I'm not a 'health freak' by any stretch of the imagination - just hoped this just might help someone else.

Hi Wildrose, I've had psoriatic arthritis since my 20's which is similar to RA, fibromyalgia with damage to my knees. It affects my hands, sacroiliac joints, spine, neck etc. I have similar experience of pain in the night and difficulty getting going in the mornings. I to can't tolerate anti inflammatories due to the effects on my stomach and so have difficulty controlling the pain with codydromol and the occasional tramadol. At the moment my disease is active, but I've had periods in remission of up to 5 years. I'm on immune suppressants to control the disease, which work up to a point. But I understand how very hard it is at times to live with day in, day out. Especially with the added chronic fatigue which accompanies the disease. I agree that a good supportive network is vital, and there are some good, supportive arthritis websites online. In my experience it's knowing my limitations and when I need to stop and say no to the numerous pressures on your time and energy. Not always easy, especially with loved ones. I want to start doing Pilates to try to strengthen the muscles around the joints in the hope it might help. The dark days are horrible but I hope the sun comes out for you soon and all those with AI conditions.

wildrose
You have my sympathy, severe and constant pain is no joke!
I take Tramadol when I really need it, but try to avoid it whenever possible because it gives me very weird dreams, not nightmares exactly, but not far off!
Amitryptyline makes me sleep well, but the next morning is dreadful, I'm so dozey that I can hardly function at all
Can you ask your rheumatologist if there's another medication you can try that might not leave you so tired?
Also, I wear fingerless neoprene gloves in the house when the weather's cooler, they really help with the hand pain. I crochet as often as I can to try and keep my hands supple, and occasionally the yarn gets snagged on the gloves, but a quick swearing session soon fixes that problem
Actually it's been scientifically proven that a person being subjected to pain feels it less if they're swearing at the time, so shut yourself away from innocent ears and have a rant, it might do you the world of good