RA not yet confirmed, is this site still for me

[Babs321]

Hi, I went for routine health check mentioned my terrible fatigue and painful joints which I had put down to menopause, blood test showed raised ra factor and inflammation. Seen by R consultant, he wasn't convinced but ordered bloods, xrays and full bone scan. This was in June but my next appointment isn't while Sept. Many joints ache but my feet and hands are worst, they double in size and become very painful. I cannot straighten some fingers when they flare up. I take diclofenic as and when which seems to help a little. This all started about 18mths ago but I didn't bother my dr because I thought it was all part of getting older, only mentioned it in passing at my check. I'm one of these who never goes to the drs, just ignores things. Any advice would be welcome. Sorry I've gone on a bit I'm new to this, haven't been on one of these sites before xx

[Hidden]

The symptons sound suspiciously possible.

Welcome to the site.. im Alison xx

[Babs321 in reply to Hidden]

thanks Alison, I'm still hoping my problems are down to the menopause. I can cope with the pain a bad toothache type but the fatigue is getting me down. I'm ignoring it at the moment as best I can, I can't rest when I want because I'm a full time carer to my 15yr old son who has severe learning difficulties and needs 24hr care. That's my biggest fear if I do have RA what does the future hold for me looking after him. Day at a time though and keep smiling it's the only way to live. xx

[Philip]

maybe ask your doctor or phone the rheumy s secretary and ask them about the results from te tests. might elp.

[Babs321 in reply to Philip]

Thanks Philip, think I'll give his sec a ring she may tell me the results over the phone.

[Judi]

Hi Babs,

You may need to take diclofenac on a more regular basis to reduce the inflammation. As Philip has advised, try speaking either to your rheumy consultant/specialist rheumy nurse if you have one (rheumy consultant's Sec. will give you the name of specialist rheumy nurse if you haven't been given that info.) or alternatively see your GP - even if it's not RA you still need to be more able to cope without the pain/swelling etc. especially as your son needs care 24/7.

I take diclofenac 3 times a day (along with many other medications) and have had RA for at least 18 years now.

With regard hands and feet swelling - I find soaking them in cold water helps me while others find that heat helps them. We are all so different.

We all wonder sometimes what the future holds for us and ask 'why me?'

The long term prognosis for people with RA is a lot better than it was years ago. Different medications are used early on to stop deterioration of joints - which will probably mean that you will be given a cocktail of drugs eventually. (From someone who only ever took paracetamol when I had a really bad headache/

migraine before RA was diagnosed I resigned myself to the fact that I had to try whatever medication was on offer to keep on the move).

As you have said "keep smiling and take each day as it comes" - keep that positive attitude and it will help you (long term).

Don't forget the people here will always listen whatever you want to get off your chest - no matter what time of day or night - we all have sleep problems - so it's quite possible someone will be here to help.

Sorry this is so long winded I do go on a bit.

Judi

[Babs321 in reply to Judi]

Hi Judi, I like long winded, if you see a 3 legged donkey pass by it's probably been talking to me. lol

I know what you mean about the meds, I hate taking anything. Have suffered with severe back pain past 20yrs and just live with it. Only take pain killers for it if I absoloutly need them. I think that's why I can cope with the pain now. I take the D if my fingers are swollen and painful because I need my hands but once they settle down I stop. Guess I'm going to have to learn to treat myself better.

I find soaking my feet in cold water helps too, wonder if we could invent something that would hold cold water we could walk around in.lol

Babs xx

[Hidden]

Hi Babs - I am in very similar circs re the possible RA symptoms -and have been coming here to HU rather a lot although lately - although I also feel a bit worried about whether I belong here yet. So I understand exactly how you feel. I don't have a 15 year old with problems that you outline but I do have three teenage sons, the oldest of whom is on autistic spectrum, and my husband has cared for children, young adults requiring round the clock care and now the elderly so some experience of what your life must be like.

The pains you are experiencing sound remarkable similar to mine but I don't have any visible swelling at the moment - which has added to delay in diagnosis. My aunt, who I hardly know, arrived last night and was telling me that her daughter, my cousin, has confirmed RA but she doesn't take more than painkillers because her rheumy has said it's not yet aggressive or advanced enough to warrant more toxic drugs. My aunt doesn't know much about all this as her daughter is "very stoical" so I feel I have to be extra stoical as well now while she is here! I tried instantly to stop limping at least (without success as knee was v sore). I did look this up last night online and read of several people with "conservative rhheumys" who err on the side that if no joints are being eroded then better to leave well alone until signs that the RA has become more aggressive. Not sure whether this is good or bad but I hope and have to trust that my rheumy knows what he's doing when it comes to early RA. I saw him ten days ago for first time and won't see him again until November.

Meanwhile for pain my GP has prescribed Amitriptyline 10mgs to be taken before bed and this does seem to be helping me with sleep and with the pain in my hands (not feel wierdly) a lot but you need to take one early enough because it seems to kick in slowly and can make you feel very groggy the next day -which wouldn't work for you. If you took it mid evening it might be ideal though? He said it should work for muscle relaxant for chronic and neuralgia type pain while he waits to hear back from the rheumy.

I don't think we should worry about whether we've arrived here on HU too early because we have so many unanswered questions and we can always leave if things turn out well but meanwhile everyone is lovely and some have been in exactly the same boat. Knowledge and information are always better than sticking head in sand and hoping it'll all just disappear if we don't look - well it is in my book anyway!

Tilda

[Babs321 in reply to Hidden]

Sounds like it's a bit of a post code lottery with the consultants and treatment, did yours do any tests. I don't know which worries me more, tests showing I have RA or them showing I don't. Obviously I don't want RA but I can't face the long road of test after test not finding anything. I've had my fill of hospitals since my son was born and don't have the time or energy to go for myself. If these tests come back neg I'm the sort who will say, fine I'll go home and live with my pain.

I always say knowledge is power too.

Strange how many menopausal women seem to be effected.

Good luck with your journey hope you get it sorted

Babs

[Hidden]

PS this has all arrived post menopausally for me also! Can't be coincidence that so many people seem to get it after having babies or after/ during menopause can it?

[juliep]

.Welcome Babs321. Was only recently diagnosed (march 2011) but the sooner you are diagnosed the better. I can empathise with you. I have a child who is 11 and is disabled. Im a single parent and finding it very difficult with the physical aspect of it all. BUT my son has a social worker who is brilliant and she referred me to adult services for some help. I am now waiting to hear if i can have a carer come in in the morning to get my son up and ready for school in the mornings as this is the worst time for me. I presume that your 15 year old would also have a social worker or OT/Physio. If so i would get in touch and ask for them to refer YOU to adult services for some help. Adult services were very good to me and the social worker said there should not be any problems getting the help i need in the mornings. Good luck. If you want anymore info then just send me a message. Jules x

[Babs321 in reply to juliep]

Hi juliep, you must be finding it hard coping with RA and your child, I wish you well. You're lucky to have a good social worker, mine is c**p. I've had some very bad experiences with SS both child and adult. I've just started transition for my son and already hit probs so don't hold out much hope of getting help. My plan was to wait for a proper diagnosis then go into battle for help.

Babs

[Hidden]

Hi Babs. This does sound horribly familiar to me too, I am post menopausal and was told my doctor it was my age!

Not to worry you but I really think you should keep on at the doctors and the cons secretary because the sooner they get a diagnosis the better especially if you are in pain too. I found the fatigue the worst to contend with.

Good luck

Julie xxx

[Babs321 in reply to Hidden]

Hi Julie, hope you've had a good day, pain free and all that. My GP told me I had RA gave me diclofenic and sent me away. Only after a visit to the RA web site did I realise how important it was to get refered to a rheumy early for a proper diagnosis and went back to see her. I'll give the sec a ring see what I can find out.

Thanks Babs

[Gina_K]

Hi All, and welcome Babs, only time will tell if you have RA, scary times I know. Just wanted to comment re hormonal connection, in laymans terms no one know exactly what triggers RA in some people and not others, Stress. virus, strep throat, and I have heard bandyed about ' oestrogen fluctuations' I am myself post menopausal, and indeed put down joint pains to meno, I had hysterectomy quite young so meno was early too. I have pondered the whys and wherefores of me getting RA, on this site, and on many occasions, but I think it might be for the best to accept that you have it (when you do) and realise that there are great treatments now-a-days. Accessing the right one may prove the problem. The 'toxic' ones are the ones that work, sadly, and they can be extremely expensive on an already hard pressed health service. It does seem sometimes that the 'toxic' (expensive) drugs are saved for the worst cases, maybe I'm wrong but this can be gleaned (Interpreted) from the many blogs, I have read. The opposite actually works if RA is agressively treated there will be less joint damage (in my opinion)

Good Luck Babs one way or the other - you'll be OK.

[Babs321 in reply to Gina_K]

Hi Gina and thank you, mine could be stress related I've had more than my share these past 15yrs. I'm with you no point saying why me, get on with life as best you can. Sounds like the treament options are a mind field and we have to put a lot of trust in out rheumy's. Hope I have one who knows what he's doing. I think my biggest enemy will be myself, I'm terrible for not complaining, if a doc asks me how I am I'll say fine even if I'm in terrible pain, I have a habit of playing down my symptoms. I think I'll need to start telling him exactly how my symptoms are effecting me. Not think I'm moaning or wasting his time.

Hope you've had a good day

Babs

[Gina_K in reply to Babs321]

Babs, a good rheumatologist will know without you telling them, they also rely quite heavily on blood tests, which really tells them a lot. Bans the one piece of advise I would give you is you will know if that consultant and ur gp are taking the right attitude and if they are not get a second opinion asap. I knew there was something seriously wrong with me I had no energy ie' tired moving hangers on a rack to look for something, it was a locum diagnosed me my gp said was stress and I encouraged her in that believe, my feet barely touched the ground when they found the positive factor and I was sitting in front of a ending. 3 years ago now had to take few months off work, steroids for couple of years, first treatment plaquinil, next methotrexate building up to 20 mg then haleluia humira, now I am well though still tired n achy but Ra under control ie. Bloods normal (remission) there is no cure but there is lots of treatments that can make you feel good, my consultant does,nt like amytrtiline and has me on cymbalta happy days for me. Private msg me if there is anything specific u want to talk about. Remember though I am in rep of Ireland not same as n h s!

X Gina.

[Babs321 in reply to Gina_K]

Thanks Gina, glad you're feeling ok. xxx

[Hidden]

Hi again Babs - you must be worn out with it all. I know I have been. Uncertainty is the most exhausting thing to cope with if you are the kind of person who is naturally decisive as I am. To answer you question - yes I think it's a postcode lottery but then I live off the North of Scotland on a group of islands so could never really expect to be able to access the kind of specialist health care that a lot of people seem to get on this site - ie rheumy nurses etc. The rheumy I saw seemed suave and business like and thorough but not a person who I could ever engage with. He took an anti CCP test and a chest x-ray. I already had a low positive rheumatoid factor and raised ESR - (inflammation) but he was far from certain that this is RA. I worry more about this uncertainty being prolonged than having RA now - even though I hate the idea of RA and drugs for life etc.

But that drug Amitriptyline 10mg i've been prescribed does really seem to have lifted things for me and I've had a whole day of feeling up beat and almost pain free. The feeling of subtly swelling is still there along with the odd familiar twinge of tooth ache around my joints - but so wonderful to have a break from most awful relentless pain in hands, feet, knee etc and I feel very positive. -If this is the anti depressant part of things then roll it on - I've been calm, positive and pain free for almost 24 hours and have just taken the third one - wondering if it will all just go away or at least I might have found wonder drug for me?

Worth hassling your GP for some perhaps while you await diagnosis? It hasn't helped my sleep pattern much yet but with this much less pain i think it will do soon. Perhaps I'm attributing too much to the drug but it certainly seems to have coincided strongly with pain abating where steroids and painkillers haven't touched it - so worth a shot perhaps?

[Babs321 in reply to Hidden]

glad you're feeling better, I'm same as you not sure which is worst having RA and drugs for life or having symptoms without a cause.. xx

[Zena]

Hi Babs

I've only scanned through your blog quickly but - have you had

a) RhFactor blood tests, but even more importantly

b) Anti-CCP antibody tests?

The latter appears to be the best identifier of RA and the medical world says this test is good as you can be diagnosed earlier and treated sooner before permanent damage is done!

Good luck

[Babs321 in reply to Zena]

Hi Zena, my gp told me I had RA based on a raised Rfactor and inflammation ( her words) she had no plans to refer me. I came home went on RA website and realised how important it was to get early proper diasnosis. I went back and asked to be refered. My Rheumy has done blood tests he did mention something about a better test I think it was CCP, I've also had xrays, hands wrists, feet, ankles and a full bone scan. All these tests do lead me to think he's being thorough and knows what he's doing. Sorry if I'm a bit unsure about all the tests etc, it's all very new and I can see I've a lot of reading to do so in future I know what the docs are talking about. Knowledge is power so they say. Hope you're well. xx

[Zena]

Rheumatoid Factor isn't conclusive as it can be 'false positive' and vice versa - i.e. you can have RA without being + and vice versa so I read. You should also look up the NICE guidelines - which isn't set in stone but is what should happen in a perfect world I believe. The Anti-CCP they have to send away to be done but sounds more accurate than the foregoing.

Hope you make progress but at least you are amongst friends here.

x

[Babs321]

Thanks Zena I'll check out the NICE guidlines Babs xx