What a week! - coping with depression, doctors and drugs.

Mat48
Mat48 Member Posts: 1,075
edited 25. Sep 2013, 02:44 in Living with Arthritis archive
Hi All,

Can't remember my last post but I thought I'd tell you as briefly as I'm able to about my bizarre week. The weekend before last I was taking a dopamine drug, Pramipexole, for possible restless leg syndrome when my heart started skipping and my chest felt tight and I developed narcolepsy - even falling asleep in the rain on a beach while walking the dogs.

I'm off the Methotrexate and this drug was to try and help my restlessness at night - which was being caused either by Peripheral Neuropathy or neurological symptoms. I phoned NHS 24 and ended up being rushed into hospital with a suspect heart attack. It wasn't of course but they kept me in overnight and the doctor who discharged me said that although my heart and bloods were fine he thought that the Pramipexole, on top of the remains of Methotrexate and neuropathy and insomnia was just too much for my body. The discharge sheet said "extreme fatigue caused by new drug (probably)".

The next day (last Tuesday) I went to see my other GP, a lovely woman, and told her that my legs and feet were still numb and icy cold feeling and the rest of me still felt ant-ridden :x and I had flash pains in my hands and feet that took my breath away sometimes. I said I'd had enough and was feeling scared by the insomnia now and was finding I had no appetite and was constantly either very high or low. I was also having hot sweats and anxiety attacks all the time. She felt that I was severely depressed by the medicalisation of my life and ensuing lack of control. All to be expected she felt and she put me on Mirtazapine - an anti-depressant which would help me sleep - and asked me to return in a week (tomorrow).

After 7 weeks off RA meds (injectable MTX) and having tried and failed two other DMARDs I have been waiting for RA to come hurtling back as it did last time I came off it in March. I won't go back on it now because the neuropathy has started to ease a bit and the woman GP and hospital doctor all felt it was the most likely suspect for the PN.

I emailed my man GP (I see two GPs) to explain that I thought the RA pain was slowly returning, especially in my feet, and to enquire what he and my rheumy have planned if and when the RA came back with a vengeance. No one has yet told me when I'll next see my consultant or what might be done if I flare up badly so I have been feeling in a bit of suspence.

On Friday night my husband was working a nightshift and I took my Mirtazipine and carried the puppy downstairs to take her out for a last pee before bedtime. She nuzzled me suddenly and I missed my footing and fell down about five or six stairs onto the hard oak flooring. My son heard my "blood curdling scream" and found me on the floor moaning in some shock. So he got me up to bed and gave me paracetamol and water and some Ibuleve gel. I calmed down and refused his suggestion that we phone NHS24 after the previous week's embarrassing debacle :oops:

Saturday was painful, Sunday the pain moved in my lumbar region where I've been told I have some degeneration of the L5 by a physio. I could hardly move. But today - after 11 hours sleep on my new anti-depressant, I found that the back pain had lifted for the most part and only now hurts if I twist or try and get out of the car or out of bed. My wrists are both a little sore, as are my feet and my shoulders but it's nothing I can't live with.

My GP (man) emailed me back today saying that my consultant has suggested that I have an IM steroid jab to test whether or not this pain is the RA returning and to tide me over. I've discussed it with my husband and we decided not to go for this option. Both oral and injectable steroids make me go bipolar and insomniac and I've had quite enough of these highs and lows lately. Also my last one masked what little amount of swelling I get and led to a delay in diagnosis by a further four months. I would rather live with swelling and pain while they decide what to do for the best. In fact I'd be quite relieved if this RA of mine actually revealed itself in a traditional form because fatigue, depression and flu-like ache currently seem to have nowhere sensible to attach themselves to. I know this sounds nuts but it's just how I feel :roll:
If you get lemons, make lemonade

Comments

  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Mat, you are really going through the mill. I can't begin to follow all the pains and tinglings, numbness and narcolepsy, insomnia and depression. Mine is straightforward RA, it does what it's supposed to do and the meds do help. However, you seem to be caught up in a nightmare right now and I do hope you can metaphorically wake up soon. I hope the anti-depressant at least will help as that should give you more mental energy and enable you to cope better.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi Mat
    Oh dear poor you what a traumatic time you have had
    I agree with you about not going for a steroid jab
    What is you GPs plan for you? Have they decided to investigate why you were so ill on the new medication?
    I bet you were really scared
    Just want to offer you my support and (((( ))))
    I hope you feel better soon
    Maria
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    Ugh SW it really comes to something when I end up envying people their straightforward RA! I know I'm lucky not to be in perpetual agony but I just feel that whatever kind of RA I have it's very insidious indeed and it makes me very angry. I'm angry most of all with my own body for being so ludicrous but I'm also getting angry with all these doctors for not referring me for MRIs and neurology specialist and just expecting me to take all these drugs or nothing.

    I'm on a kind of RA hunger strike now to try and out this bu**er for once and all. If it runs away then that would be wonderful but I'm told by rheumy and everyone else that this is very unlikely. Plus today I'm in even more pain - and it's not just my back its my hands feet, and most of all my shoulders. This was the kind of pain I was in last week too but it's just slowly worsening and my fall distracted the focus of the pain for a few days too. Now got a socking great bruise the size of a football on my rear to show for that!

    But I've had RA pain and it doesn't feel like this? RA pain is excruciating, as my back was this weekend, and that's what I expect of RA now - not all this subtle flu-like stuff with no visible swelling at all. I'm sure the rheumy and GP are suddenly going to pronounce me as having fibro not RA and that really will be the last straw I think. Not that I think of fibro as less severe you understand but it just seems to be a big get out for a lot of doctors and there's no real treatment so I'm fighting that one before I land it even? Sorry if I'm sounding mad - it's because I do feel it - yes!

    Oh yes and Maria thanks so much you are very kind too. Off to see the woman GP now - hope I don't combust! XX
    If you get lemons, make lemonade
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You sound 'mad' as in angry but not 'mad' as in insane. You are struggling on some fronts but maybe they can be more simply resolved not by meds but by your taking better care of yourself, easing back on your activities, resting to give your beleaguered body the break it needs. Many of us are coping with depression, doctors and drugs (you are not alone in that) but please try to be kinder to yourself, to ease the panic and your extremes of analysis with every thing that happens. Maybe you fell asleep on the beach in the rain because you were so very, very tired? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    Thanks DD I think you are absolutely right about the beach and everything else but then I'm not the only one who pushes things and struggles to pace things either. Just back from seeing lovely woman GP. She said my questionnaire form I gave back to her re depression register was terrible - I scored 99% and was therfore on the suicide risk category. I don't know why I didn't foresee this but as I told her today - sleep deprivation can send a person doolally (sp) and today I'm feeling less depressed but more angry.

    If I was her I'd have referred me to the pain clinic or for some kind of counselling to get me off her back really but she just agreed with me that she would be exactly like me only worse and would take nothing lying down at all either. So she is keeping me on Mirtazapine one a day and says she's writing to my rheumy to say that I'm finding it very hard to accept that I have RA and would there be tests such as MRI that might help confirm or exclude inflammation because I so rarely show inflammation and feel very vulnerable now that I'm off all RA meds (not if my own choice either).

    I see him so rarely and briefly and have no specialist nurse and therefore rely too heavily on my GPs (I feel ) , who keep scratching their heads and trying their best to help me - but let's face it RA without much swelling and infrequent pain but with generalised aches, flash pains everywhere and widespread parasthesia with a continually raised ESR isn't that common. If I was in a bigger place then I would be getting more specialist advice from people seeing hundreds of rheumatology patients everyday but up here I just feel freaky which doesn't help my state of mind much at all!

    I'm writing this lying down on my back on my bed - the only place I feel I belong just now! I know I over analyse everything but that's just my way and its very hard to stop - my own personal belljar I guess? Mat x
    If you get lemons, make lemonade
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    RA without much pain and little signs of inflammation is not that unusual - the generally achy, tired and 'fluey' feeling is generally an indication that the disease is active. The possible parasthesia may be your version of RA or it may be caused by other factors I thought it was your choice to stop the meth? Didn't you feel that that was the cuplrit for the ants etc?

    GPs cannot be expected to deal with an auto-immune arthritis, that is not their remit. No doubt you are hampered by the geography of where you are and the effort that is required to get to see the rheumatologist but I suspect that even he won't be able to help until you start to get a better 'handle' on things. I'm not best pleased with my having PsA, OA and fibro but they're here and there's nowt I can do about it apart from take the meds (finding the right combination takes time, in my case years) and get on as best I can. That's all any of us can do. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Toots
    Toots Member Posts: 483
    edited 30. Nov -1, 00:00
    So sorry Mat, I have no words of wisdom but like to offer hugs where I can. I hope that at least getting some sleep/rest will make you feel less like you're going off your head and a little more human. I know you're angry right now, and not willing to let it get the better of you, but I think you need to slow down a bit and be kind to yourself for the moment x
    Toots x
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hello Mat
    Blimey you are going through a rough time to say the least..hopefully just getting it all out..will help a little..I do hope you get some relief very soon..((())xx
    Love
    Barbara
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    Thanks Barbara and Toots for your kind thoughts and support.

    DD I did decide that I couldn't risk taking Methotrexate until I knew for certain that it wasn't doing irreparable damage to my peripheral nervous system - but only because both GPs felt it was the most likely culprit and then, after I had skipped a dose, told me they weren't happy to prescribe it anymore for me anyhow. So I regard this as a consensual decision really - as even my consultant agreed that I had to come off it in order to find out.

    Annoyingly 7 weeks later I'm none the wiser but no-one wants me to risk going back on it again either. Here's what GP said in email yesterday;
    "Hi (Mat) I have had a response from (rheumy consultant) and he thinks that the most obvious thing to try next might be another dose of im steroid. If the pain is due to reactivation of your arthopathy since stopping methotrexate this should work and would give us better evidence for our next action. If it does, we are then faced with the dilemma of which disease modifying drug to use longer term - obviously the anti-TNF drugs are one option but these are not without their drawbacks, sadly, none of the options is completely without! Happy to do the injection for you in the next week or two if you want to do this. Best wishes (GP)"

    So everything is still possible if you know what I mean? I think, if we are all satisfied that the aches and neuropathy is inflammatory in some way then I will probably be offered Leflunomide and maybe anti-tnfs.

    But I feel I want other neuro and possible spondy arthritis stuff ruled out before I start another drug DD. The anti-tnf drugs aren't without risk as he says and with all the creeping and crawling and numbness everywhere, I would rather MS and other vitamin defficiences were eliminated from suspects properly before I embark on more meds.

    They can find out an awful lot from MRI and ultrasound or even x-ray but I've never been offered any sort of imaging at all apart from x-ray of my hands earlier this year. I think it's a very different bag if you are showing signs of classic PsA or RA with swollen hot joints (as I've had in the past) or Psoriasis. But when the diagnosis comes with a strong hint of vagueness as mine did then it's a natural human need to have more concrete info before embarking on steroid injections or more DMARDs or anti-tnfs. Mat x
    If you get lemons, make lemonade
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    I like the sound of that GP. I think she's got all bases covered. In your place I'd trust her to get it all sorted. I hope she does.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    Yes you are right she's great! She just phoned to tell me ESR only at 36 (44,28,39 is the recent pattern) so on that basis she agrees pointless having a steroid injection for now and just to be glad I'm only getting low level pain and stiffness all the time rather than hot swollen painful joints. Its weird really when you consider I've been off methotrexate for six weeks now and makes me wonder if it was just a very assertive post menopausal/ palendromic type of RA after all and has possibly gone to ground or even upped and left? Dangerous thoughts I know but I'm trying to feel lucky rather than scared about when and how it may return at least. X
    If you get lemons, make lemonade
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    I sure hope the neuropathic stuff ups and leaves for you too, Mat. Or, at least retreats to minor annoyance.

    Hoping you are getting some restorative rest after your ordeal. Sounds awful!

    xxAnna
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    The PN has definitely taken a back seat again now Anna :)

    It came raging back briefly for two days this weekend following my fall but GP pointed out today that this didn't mean much re PN because compression of back nerves wouldn't affect my hands and arms! I did reply that shoulders and the rest of me took a broad hammering when I landed very hard on my bum with the impact - which she agreed about as my shoulders and elbows are also very achy just now. Anyway to me this indicates that PN is probably not neurological as much as neuropathic. She's convinced it is 18 months of MTX that caused the PN - as was the hospital doctor no.2 who discharged me. The first doc said that nothing about RA would surprise him and he was inclined to blame RA for PN and felt there was no point in looking for other possible causes - between RA and MTX - one or other could and had caused this PN he felt.

    As DD points out RA could easily slip about causing degrees of pain, numbness and tingle without necessarily showing itself up in classic form of swollen hot joints and I'm feeling more reconciled to this fact tonight.

    How are you doing anyway Anna? X
    If you get lemons, make lemonade
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    You do sound more settled in your thoughts, Mat. It sounds like you have received some reasonable explanations for your symptoms which is all any of us need to lessen the worry after all! Lets hope it continues to to mild and at very least, not progressing.

    Me? Well, I'm having tests/x-rays to rule out AS in the spine. Last week I had much blood removed for various tests, all of which were unrevealing. My rheum visit is in 3 weeks and GP wants me to speak to him before we go further with tests. I still take methotrexate and only have responded partially, so I'm not sure what will happen next. In the meantime, I'm feeling mind-numbingly sedated and "high" with all my meds and still not used to the new one. I'm not even up to the full dose yet. It does help with the spasticity (and, by accident the anxiety of all) and I'm at least sleeping well. Too many meds now!!!

    Still having lots of spine/neck pain and hands and feet are joining in, but hoping this latest flare is starting to settle down? I'm not sure. Had my Gabapentin dose upped and it's working for the tingling/pins-needles stuff.

    xAnna
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    That's interesting re the AS part and glad you are being well monitored too. I asked my GP to mention possible AS re the spinal stuff and neuropathy to my rheumy because I've been told on three occasions this year that I obviously have L5 degeneration - but no one has actually imaged or even examined it and I would like them to at least rule out an inflammatory component - what with all the neuropathy and RA. So as usual we have a bit of overlap but unlike you I'm refusing all meds apart from the new anti-depressant, levothyroxine and the odd co-codimol. Hope things sort for you when you see the rheumy. X
    If you get lemons, make lemonade
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi Mat;

    It's too late for me refusing meds, but so far I've avoided anti-depressants. I admit to being a real mess of symptoms and meds. It piles up and after a while you can't really tell symptoms from side-effects. Most of mine I've been on for several years, but I do remember how horrid the symptoms were when this all started. It's all compounded on it's self with joint, muscle, nerve effects, etc pain. Who can unravel what's what? Even the patient can't. At least we made a start identifying PsA at work with me. That was certainly helpful. Now maybe we can figure out what the other stuff is, I hope.

    Worried about what the rheum will say and whether he will want to add more meds....Everything seems muddled at the moment and I really don't even know how to describe what's been happening. I guess I'll just wait and see what the new tests show, if anything.

    In limbo, as usual.
    xAnna
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    So difficult for you I know. I'm slightly weird about this but I've basically decided to try one new med at a time only and put up with a degree of pain and discomfort in order to keep "clean" as it were. I have drugs such as Levothyroxine which I have to take so I'm not strictly drug free but I am in the muddle you speak of without drugs now because they can stay in our systems for so long.

    I am disappointed that the insomnia is coming back now despite the Mirtazapine antidepressant. She would have increased my dose yesterday but I refused - now feel a bit silly but it was a big deal enough for me agreeing to take it. She said I scored so highly on the depression register (a questionnaire she gave me to complete) that she was very concerned indeed about my state of mind. But that's what long term sleep deprivation does to us I guess. X
    If you get lemons, make lemonade