Pissed off: It’s a joke two years now going to the docs... - NRAS

NRAS
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Pissed off

It’s a joke two years now going to the docs telling them I don’t feel right and being prodded n poked n ignored saying go away your a hypochondriac given swollen knees hands hardly able to move some days. Steroids is what I’ve been given and I was told in 6 weeks I’d feel better lol now given them 5 months later after being in so much pain and not knowing what the is what. Walking on glad for nearly two year I feel like who actually cares doctors don’t no one does

In life in general. We’re told tell your doctors tell your parents tell someone b******t tell a drug maker or phone a drug dealer n see what you get. Democracy tell anyone who listens the only thing I’ve got to look forward to is methotrexate great n see how that works

[Post and some replies edited by a moderator]

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‘Foul’ language or not I see this post as coming from someone in pain and very desperate for someone to help them not from someone trying to undermine freedom of speech. Nothing in your post is helping or supporting this person at all. That’s what this forum is for. And this forum does have administrators and so it should.

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I just read on these forums now. There's still some useful information to be had. But its best not to get involved and let them get on with it.

Be good and take care.

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Really? Your advice is to ‘figure out how to cope’ ? I think that is what they are on this forum for, to get peoples support to do that.

This post is still here because it hasn’t broken any guidelines.

I’m glad praying cured your RA, it didn’t mine. Now you are cured you could be bit more supportive to those that it hasn’t cured don’t you think ?

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Hi Kittyj

I was just thinking the same thing

X

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Me too!

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I can see somehow I offended you and I apologize for that. Having said that, people can learn to speak properly to get their points across. I’m sure I’m not the only one that didn’t like the f bombs. And I was supportive......prayer, it does work but not for all.

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No need to be sorry Preacherman, I’m not offended, just didn’t think it’s helpful to say that to someone who is very clearly struggling 😊

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I can tell from your post how frustrated and angry you are and I think you should ring the NRAS helpline for some advice. However as they are starting you on mtx then someone has listened to you. Hopefully it will kick in relatively quickly. Steroids are only good for short term relief and if your RD is not controlled then as soon as you stop them the pain and inflammation comes back. I hope things improve for you soon, just try to avoid the swearing 😉

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Hi New50, sorry to hear that you’re obviously in a state of anger/frustration and distress, as per the swearing (which you’re not noted for) - perhaps tone that down :)

As Ruth suggested, perhaps give the NRAS Helpline a call, if you’re in the UK. MTX is at least a step forward, hopefully you should see some results in 6 - 12 weeks.

And please ignore the 3 somewhat judgemental and unhelpful replies, no need to start a flame war!

All the best, cheers Deb :)

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They have not broken any guidelines. Many people vent their anger on this forum. A lot of people are angry and need to let off steam and get some support and advice. To say someone is self pitying is not helpful or supportive.

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Here here!!

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Actually I think you will find this is exactly the place to vent your anger with people who should understand it and not have a go at someone who is so obviously in pain.

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Sorry you are having such a rough time.

As you are starting on mtx you are obviously under a rheumatology specialist. Go speak to the rheumatology nurses to get an action plan, I think they need to know how the whole situation is affecting you and hopefully can give you more information on how they're going to treat you.

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I don't think that this person should be being told off for using bad language. He/she is obviously frustrated and angry and sounds like they have every right to be. OK probably needs to tone language down a bit, but I think that some constructive advice here (well done Yanni and Ruth) would work better than a lecture. Give New50 a break and show some sympathy. Any anger in response to this cry for help is pointless. BTW notso good, you spell it 'foul' not 'fowl' (unless you're talking about poultry obviously). Or should people be told off on this site for not spelling correctly now? Please show some tolerance of others' failings. xx

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Exactly!

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Thanks for the spelling correction. I can forgive myself for that as English is not my first or second language. I speak, read and write 4 languages and am happy to say I don't use f/bad language in any of them.

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Oh for goodness sake, get over yourself.

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Wow what a put down. Get over yourself is not a very nice is it.

And your saying be supportive.

What a hypocrite.

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That should be 'and you're saying be supportive' - come on now... you're (not your) making this too easy for me.

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Lol...I think you should be doing that. You support bad language and you criticise people who point it out.

Get over yourself lol.

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Oh, but I am criticising bad language … I'm just not criticising swearing.

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Ok.. but try and get over it. It can't be good for you.

Me.. I can't work out the difference between the two.

Fowl day tomorrow.

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Hay I really understand your anger and frustration I’ve been going through this for 4 years now I’ve been given all the usual medication which unfortunately I didn’t tolerate well so had to stop taking them the latest one being hydrcloroxine.

For the last 3 months I’ve also had tinnitus, dizziness, headache, migraine, anxiety and nausea and a suspected stomach ulcer, I’m now unable to work going back and forth to the doctors waiting months for specialists appointments feeling like no one cares i can’t take my usual painkillers and just feeling like no one is listening I’ve been at the end of my tether. However, I’ve realised there’s only one person who can help and that’s ourselves. Start with gentle exercise I find swimming or a walk in the sunshine helps me I also try and eat healthy ( even though I’m a chocoholic)

it’s taking time but I’m gradually coming out of the dark tunnel and can feel a little bit of positivity returning.

I hope this helps.

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You might get some helpful replies without the unnecessary language.

FYI .Methotrexate works extremely effectively for thousands of people.

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I feel your pain inside and out, no wonder you want to swear and shout, its not fair how your being treated.

I think most of us have been where you are

sometimes it feels like the world has forgotten how to care for each other

I think its great advice above

hope you get sorted out very soon

you know there is a saying -you catch more bees with honey, than you do with--and I have forgotten the saying, but yu know what I mean, if you go with all guns blassing-your get shot down-or shut down.

so maybe, have a good shout and scream in your home, get it all out, then go back and tell them again you need sorting.

please excuse spelling

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Vinegar is the word Veronica.😜😜😜

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Good post VF. I do my cursing when I'm in the house and alone if I need to. That's just the way I am. x

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Deep breath , write everything down . Read it put it away and tomorrow start a diary write up how you're feeling with the new meds keep a honest answer on pain etc . The reason I say this is you are tired ,in pain and frustrated . Nothing is worse than being told it's in your head , but getting angry feeds the RD or any other auto immune problem . If you can swim do so anything to start happy endorphins as they help . Take it one day at a time it's ,hard we've all been there . At your next appointment go through your diary with your consultant, that way your looking at it again with fresh eyes but all the information is at hand . Wish you well 💐

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That’s a beautiful minded reply and thank you, believe me I’m a very positive person but I’m finding things hard, but yes you’ve reminded me of what I would have done normally by writing things down after all these years I have learned yesterday is history and tomorrow is a mystery. You’ve helped by reminding me to center myself. I’ve just felt so lost too many thoughts and feelings zooming around my mind and body. Xxx thank you xxx

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I glad you remembered to breathe. Sometimes it's good to reflect . It took nearly 15 years for me to get treatment and diagnosis . It broke me I almost wanted to not be here , but I love the gifts I was blessed with to much to hurt them. I am zero negative and as such they told me I was imagining it , many people on this forum have walked or are walking this mile . Walk with us and help those who need a hand . My gift from this bloody thing is humility and patience, throwing one is only hurting me . Pm if you need to talk . I wish you a kind to yourself day 🤗💐

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That's some lovely advice that I'm going to pinch too.

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unfortunately this is standard practice for the NHS guidelines, It took 10 years for a definite diagnosis of my RA, it may be a while to find the medication that suits you but unfortunately it isn't 1 size fits all! it is very frustrating to be in pain and not have answers, I used to think that it doesn't matter what its called you are unwell, do lots of research yourself and try and help yourself by gentle exercise and regular painkillers, if you do have RA rather than other auto immune diseases it is a very unpredictable disease, take each da y as it comes and be grateful of what you can do rather than what you can't. It is awful coping with pain and the prospect of an incurable illness but this is what we can't change, acceptance, grief, frustration, anger and feelings of hopeless and depression will be some of the things you will feel. We know this by first hand experience. It matters not the language you use but the feelings behind it, we are not here to judge you darling but to support you with our own experiences and stories to tell. There is other forums like facebook closed groups and NRAS as well as the usual on line information. I knew I had RA long before my diagnosis. Good luck x

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NHS Guidelines? Isn't Socialized Medicine just great! Not!

Leave medical care up to the doctor & the patient...PERIOD.

Keep the Government off my healthcare! Same reason Obamacare is a huge FAILURE. Same reason why when people who worked all their lives suddenly retire at age 65 & have to be on Medicare and RA drugs that were previous paid for under private insurance are not being approved under Medicare!!

Horror stories of retiree's being told their ONCE approved RA biological medications for years are no longer insured under Medicare (government controlled insurance)! What do they do now?

Once the government gets to make all our health care decisions...it no longer is healthcare.

More like some unknown bureaucrat who knows nothing about us (me) sitting at a desk making our (my) life & death decisions, when it should be between the DOCTOR & the PATIENT!

Be careful what you wish for...young ones!! (Free stuff is never free)

Sure everyone will have a health insurance CARD in their wallet, but will you really be getting quality healthCARE?

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I really hope you get the best help you need. It's so frustrating and horrible being in constant pain. X

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I'm not usually active on here, instead I usually just read the often v useful posts.

I am really disappointed by some of the judgemental replies you've had but please try & focus instead on the empathy of some of the others instead.

I think we've all been there- fatigued, dreadful pain and not listened to & I get your frustration & anger. Would it be possible to see another gp for a different opinion? I get that even making let alone getting to appointments when you feel like this is major. Failing that a factual letter to the practice manager may elicit a response/an invite for a review?

Sending you huge hugs & support. It doesn't feel like it now but things WILL get better xxx

Ps don't be put off by some of the replies you've received as this forum can be really really useful in terms of insights & advice x

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I can understand your anger and frustration. Sometimes it feels like we are banging our heads against the wall. It can be difficult for overworked doctors. They can only diagnose on the basis of test results and their own observations. Once they've seen you it's straight on to the next victim.....Sorry, patient, leaving no time to stop and think about you.

It sounds like you may finally be getting somewhere having been prescribed Methotrexate. I know it can seem like a bit of a pain but I would recommend keeping a diary of your daily symptoms and going to your next appointment with a prepared list of questions you need to ask. You only have a small window of opportunity to make your point to the doctor so make the best of it.

I wish you good luck and hope that you see some light at the end of the tunnel soon.

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I can really understand your anger and frustration , which comes from the feelings of constant pain , lack of sleep etc...we all need to vent ,and find an outlet foe the anger and unfairness of it all. As previously suggested try the helpline staffed by people who really understand what is like, or write your feelings down .. I was where you are prior to starting Methotrexate, it does help also try talking to your consultant about long term management ie:biologics to prevent more long term damage to your joints .. take care and I hope that things improve for you

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Hi I found the most stressful time was waiting for a diagnosis of what actually was really wrong with me and most here feel the same. By the time I got to Rheumatology-9months - (I was sent to a surgeon first as I had carpal tunnel!) Downside- my hand and arm was so swollen it looked like a false one! Upside - it was that bad Rheumatologist said there was no doubt it was RA. In the end it was a relief to just know what it was and I can only imagine your frustration after two years on waiting!

I started on Methotrexate tablets straight away then moved to injections as easier on stomach and over last 3 years tried adding various other meds to the mix. Don’t give up hope!

((hugs)) M x

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This post was written just after midnight this morning by someone who’s posts are usually perfectly pleasant and unoffensive.

There are those who are sensitive to bad language but as soon as you see one swear word it may be best not to read the rest if it might be upsetting to you.

I have screamed at cried at my four walls from time to time and it helps, I’ve had shoulders to lean on and family to vent to and I’ve had the luxury of being properly diagnosed early on so I can only imagine New50s frustrations and the damage that’s been caused to her physically and mentally after all this time.

So let’s all spare a thought for someone clearly in pain, tired and at their wits end who probably only has this forum as a sounding board for the rollercoaster of emotions this awful disease throws at us everyday.

Empathy is a wonderful thing.

New50 I’m glad they’ve finally got to the bottom of it and I hope the MTX starts to help soon x

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Well said. I’ve noticed the negative comments have been removed and our responses to them are still there.

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Yes they have and now the replies are out of context 🙄

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So who is treating you? If it is GP then ask for a referral to rheumatologist. If it is rheumatologist then you need to be more assertive. With any doctor ask questions like "are there other options (for investigation/treatment)", "why do you recommend this one", "how long should I give it to work", "how long will it be until the appointment comes through", etc. Go with a "shopping list" TELL them what YOU want (get ideas from here and other websites (just watch out for the rubbish ones). Tell the doctor how it is affecting your quality of life - that is always a good button to push. And, no matter how angry you feel, don't lose it with the medical staff - you need them on your side.

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I'm very sorry to hear you are in such a bad place and like many of us I totally understand the frustrations of being in a bad place and undiagnosed. I too was undiagnosed for a long while and it seemed an eternity and was just under a year but a dreadful time in which I sustained some major joint damage as I was not given oral steroids but was given Steroid injections. They helped a lot to tide me over but I was very up and down with lack of mobility. I was only on painkillers and anti-inflams which made me feel awful. I've said this many times and will say again .. A great rheumatology Physio saved me with his attitude to feeling better and his positivity and his gentle exercises. He stressed that to sit and do nothing would make me even worse. Movement is key. I know it is hard but if you can ask to see your hospital Physio then you could ask about the possibility of hydrotherapy. It's gentle and soothing and you can move your joints and move in the warm water in ways you can't on land ... believe me I was shuffling on two sticks and very slowly. I have been on several meds and had ups and downs and these days there are so many more excellent effective meds you can have, but the rheumatologist may start you on the gold standard drug which works so well for so many. Yes that is Methotrexate. I've had many good years on that and it isn't all you have to look forward to, I promise. Have you had a bone scan which highlights the hot spots where RA is happening in your body? This is how they eventually diagnosed mine. My diagnosis was 1995 and before smart phones with cameras so I couldn't easily take images to the Rheumy clinic reviews. I was about to get my camera and take actual photos and have them developed of my knees, hands and ankles when suddenly on the morning of my appointment my joints were red, swollen and hot. The (isotope) bone scan results and the physical, visible evidence made my senior consultant (of over 25 years then) say .. I now can confirm RA. It was a relief. She was so frustrated as she couldn't diagnose me before then. It was because RA didn't show up in my blood, and not her inadequacy. The very hard part for me was that I was an athlete and not being able to start on an RA med whilst undiagnosed meant that I sustained joint damage and I had to give up my running/athletics. I am back doing some sporting activities since I started on an infusion biologic, but I suffered very much with is loss of my mobility. I was recommended by my rheumy to go talk to a psychologist about this as I was grieving for the person I was, I was told. It helped a lot. An impartial, sensible and light hearted person helping me see my life wasn't meaningless ... I had confidence in myself again to think of new things to do. I embarked on my BA Fine Art and then MA Printmaking. It shows you can get back to doing activity even if it does take some effort and planning once you are stable on RA meds. I also did voluntary work every week for a disabled organisation. I find to have a purpose or something meaningful to occupy you is important. I'm not saying everyone go do a degree or voluntary work .. Not at all .. It takes time to build all this. I started back with fine art doing a gentle watercolour class each week. I think more than anything you need to ask your Rheumy what else can you do as this isn't working enough, or at all. I was the world's worst for saying when I felt bad and I still am in admitting I feel awful. It didn't do me any good to be brave and say I'm OK. I hope you can have a good talk with your Rheumy and explore anything else you can do .. Like Physio etc. if that hasn't already been explored. The diary idea suggested is an excellent one. I hope you can get some positive response from your consultant and best of luck. XX

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Sorry everyone for ranting. I feel so frustrated and in pain. It just feels never ending waiting to be seen to get suitably meds and my questions answered. All I want to feel is normal so I can just do normal things. Xxx

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do not give up !

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Hiya Diana. Well, starting MTX is a positive, I see it as that anyhow but then it's been the mainstay of treatment for me for the majority of the 11 years since I've been diagnosed so I'm bound to be biased! I really hope given the time it's taken to get to here that you respond well to it. When do you start taking it? Let's see it as the chink of light at the beginning of the tunnel, starting MTX being the chink, the beginning of the tunnel being your experience so far, we've a little way to go before we travel further down it towards controlling the disease but don't worry you will get there.

The steroids... perhaps I misunderstood but were you not tapering them, they were only for a short period, I think 6 weeks +, if that is the case then you know that will be why they're not working as they had initially at the higher dose & the symptoms have returned the lower the taper goes. It could be that your Rheumy is wanting to see how you respond to MTX, the steroids would mask disease activity from the inflammation stance.

Will you update us on what's happened since your previous posts, it may enable us to help you more? You were to have an MRI, did that show anything specific? Is it that you're having trouble with the diagnosis... you've waited (!) 2 years for it & now it's confirmed? I may be completely wrong in saying that so sorry if that is the case. We also seem to have jumped from your GP saying you'd start methotrexate, sulfasalazine & hydroxychloroquine to you starting MTX. So you've must have been seen by a Rheumy, when do you start them, did he/she take time to explain everything & appreciate the time it's taken so far? It's my experience than once you do start on meds, given them a good few weeks for them to build up in your system, you'll start to see improvement. This can help towards acceptance & ease the rage at the disease & lengthy diagnosis, the feeling of being dismissed & all the pain you've had leading up to diagnosis & probaby still have just now, again if I've understood correctly. I must say of the 3 DMARDs your GP mentioned MTX is the one I'd choose to have in your position, the preferred choice & should bring better control. It will be something you've got to look forward to because it's the gold star treatment for RD.

Finally let's together turn the 😡 & 😥 into 😀 & 🤗 because that's what we're here for, to support, empathise (when/if needed) & get you through the worst of times. x

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if Methotrexate doesn’t work, ask doc about adding one of the many biologics: Humira, Cimzia, Enbrel...there are many. Do your research on how long you should wait to see results. Make doc explain what to look for in your bloodwork. If you get ignored, get a new doc!

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Sorry to say Retired16 but you're having New50 running before she's even learned to walk. She's only just been diagnosed & starting MTX, we don't know she'll respond, hopefully positively but if not biologics won't be the next meds considered. If you recall there are specific guidelines for progressing to biologics... they're not considered until/unless there's been inadequate responses to (first line) DMARDs, MTX being one plus one other.

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Responding with what was done for me. And yes, methotrexate was the base for adding biologics. After 2 years with no results I would be ticked off too!

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You were very fortunate, by that I mean I'm pleased for you. It's quite the norm to have tried & failed (for 3 months I believe) or have had a bad reaction to MTX & tried at least one other conventional (c)DMARD before being considered to try for biologics. I didn't want her to think if MTX wasn't going to be everything we hope for her that she'd necessarily qualify for biologics as the next step.

I can't imagine being so messed about for 2 years, labelled a hypochondriac, I'd have been halfway round the bend. I only had symptoms for a little over a month, very fortunate to have a GP who recognised my symptoms before examining me & formally diagnosed the following fortnight. Not so fortunate being put forward for biologics though 4 cDMARDs down the line. Ho hum, too much to expect it all ways. 😔

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Guess what lucked out having a doctor willing to treat aggressively!

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Fortuitous indeed. Many here would give their right arm to have had such treatment from only having had MTX. I wonder though, are you not in the UK? I ask as treatment & guidelines obviously vary from country to country & if you're in the US say then progressing to biologics will be different. That said I would have thought you'd have disclosed that you're not here so apologies if I'm incorrect in thinking such.

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I have mentioned that in the past and regret that there is such a variance in care! Guess I’d better find a local forum to avoid offending. I still think UK or US, you need to step up and advocate you your personal health care. Knowledge is power wherever you live!

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There's something to be said for having seropositive rather than seronegative RA even tough the former is supposed to be more destructive. At least you get a quick diagnosis and hopefully prompt effective treatment.

I'm seropositive and was diagnosed (by blood test) with RA and referred to a rheumatologist just one week after my very first visit to my GP complaining about pain in feet and knees....there was an 18 month waiting list mind! :-O

Good luck New50, I hope you get some relief soon.

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Hi New50 I'm sorry to have to welcome you to this group. Yes RA is the Pitts. I was diagnosed 5yr ago and felt exactly the same as you. Unfortunately methotrexate did not work for me so I've waited nearly 2yrs to have biological injections. All the time I've waited the RA has ravaged all my joints. The wait was down to staff shortages within the NHS so I was told. I feel very angry I've had to wait all this time with no treatment, especially with this disease been so progressive. I dont post much on this forum but I do look everyday at other people's posts and have found it to be very helpful. The majority of other sufferers are very caring and considerate and most have a brilliant knowledge of what we are going through. Try and stay strong hun you will get there, and hopefully the methotrexate will kick in really quickly to give you some relief. Take care sending hugs

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Thanks vesa! for editing. I believe there's a time and place for everything, but have to say it makes a better read without the bad language.

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I know and agree but sometimes saying anything delicately when your that vexed only stronger language will suffice after all it’s just language xxx

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Im pleased you agree! But I don’t think being angry or using bad language gets you anywhere, I’ve had RA for 22yrs and I know where your coming from with your frustrations and pain, but never felt the need to resort to the F word and more so to write it on any forum. Respect was something we learnt when young. I hope things will improve and you start to feeling better soon 🤗 X

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New50-

It took me 4 years to get a fibro diagnosis and almost 15 to get a Psoriatic Arthritis diagnosis. I know EXACTLY what you mean. I felt so relieved finding a rheumatologist and getting a PsA diagnosis because I always knew there was more going on than what I was diagnosed with. Little did I know, that was 1/2 the battle...then I started dealing with health insurance. Despite my current rheumy I have, doctors may be a joke, but the health insurance industry is straight up the Devil. Heartless, soulless and all about money. Anyone who has to deal with them in the manner we do knows the irony in the fact that they are the providers of our well being.

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It’s the fact I was supposed to be seen by the nurse last week to start my medication but they cancelled and now although I should be seen too next month, it’s the physical mental and emotional journey this past two years of not knowing or understanding what is going on, I spent a fortune on going to physio because I was told it was Achilles tendinitis. Then the shock of it being a completely different diagnosis and the long wait with little explanation. I had built myself up for the appointment and then a letter arrived delaying the appointment then to top it I received a second letter cancellation of seeing the rumy doc in June and now it’s August. I have had no quality of life just constant pain and it’s just got me so down, to the point I feel like I’ve lost myself. This condition just baked my brain and body. All the basic things like nipping to the shop or peeling veg is such an effort. Having to re think how I will work or get by. As much as I have some friends who do try to help, people have much more busier lives and own personal circumstances. It’s the lack of control you have over your own existence and independence. I know there are so many people in this world who have worse situations but like any of us we can only try to nurture ourselves before we can give that to others. I just feel redundant most days. It’s hard to feel positive when inside we’re just screaming to be our former selves. It’s horrible just moaning about how crap it can be. Believe me if I could send out happy vibes and wellness to everyone I would but I’m still in the dark about everything. Reliant on what information and experience everyone has to give. Shame Ra don’t come with a manual like a washing machine. I would most definitely find the off button lol xxx

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New50-

I can relate completely. Last year my rheumy had me on a biologic and pain med (along with a few others), and the combination was working great. Then in September the government passed a law limiting the writing of opioids. My doctor could no longer provide it and I spent 3 months looking for a dr that would. A month and a half in I entered my longest and most painful flare-up to date; it lasted a month and a half. My rheumy told me I had to get on my pain meds again. I told him I called everyone, and the pain dr he sent me to didn’t prescribe pain meds (oh the irony!). He told me he knew one that could help, but he was 2-1/2 hours away. I said “Whatever I need to do or wherever I need to go I will.” I began driving 5 hours round trip ONCE A MONTH. I got put back on my pain med only to be told at the second appointment I was over the new morphine equivalence and had to cut down 1/4 of my daily dosage! This wasn’t cutting it and my next appointment was with a nurse who couldn’t change anything. I went back a few weeks later only to have the dr tell me he wanted me to try a med I already tried but he’d send in the pain med just in case. Well, it didn’t work (duh) and the pain med was never called in. Frustrated and mentally exhausted I decided to once again quit the pain meds all together. Seeing this dr was exhausting as was having to pick up refills THE DAY I ran out. I’m currently getting readjusted to just being accustomed to daily life in pain. My insurance now cut my biologic dose in half and spaced in further apart. My pain and story doesn’t help yours whatsoever, but the best part of Health Unlocked is at least when we are provided with parallel stories we feel less isolated in the mental and physical battle we all deal with.

I’m going to post a link to a story I wrote on Psoriatic-Arthritis.com. It’s a story of some of the battles I’ve faced with my PsA and fibro (a lot of which you’ve already been told), but it ends with the conviction I have developed that I constantly tell myself that gives me some peace.

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