Offload - sorry!

Mat48

Hi All, Sorry for another offload. I am in pain and it's nothing like I was expecting when I was taken off Methotrexate eight weeks ago. I just don't know how to deal with it.

You know how it feels to have sinusitis or toothache - or both? - where there is a pressure on the affected area and it feels as if something bad and corrosive is happening deep inside and everything is tightly compacted and tingly somehow?

Well that's what's going on for me all the time in my arms and legs, hands and feet now. With it I have a weird icy numbness still in both calves and feet - like the local anaesthetic is waring off. It is truly the most disgusting sensation I've experienced and this afternoon it has started up in my shoulders too. I feel utterly miserable. I came off my antidepressant of two weeks a few days ago - had enough of eating everything and anything I could lay my hands on and gaining back some of the weight that has taken me years of exercise and dieting to lose. I also felt very bipolar and was getting angry completely out of the blue and voicing things better left unvoiced (especially in a small, close-knit community like mine!). I told GPs by email and just got a one line "thanks for letting us know" back. I shouldn't feel disappointed by this because I did sound very decisive in mine but I admit to feeling rather lost now as a result.

I have an appointment to see the man GP tomorrow morning. When I last saw him a month ago he gave me a long appointment and put me on Pramipexole for possible Restless Leg Syndrome. I ended up in hospital with side effects. We have only emailed since and I've spurned his suggestion (via my rheumy consultant) of a steroid injection because I don't want any more drugs in my system until I know what's causing this horrible polyneuropathy. There must be some other option apart from drugs surely? Pain clinic (if there is one here) or counselling or neurologist referral.

dreamdaisy

I remember a neighbour asking me what the pain felt like. I replied that it was similar to toothache in the joints. Her reply showed her utter dis-interest. 'Go to the dentist, then.' Thanks for listening - if you don't want to know the answer don't ask the question.

I don't know what to say because I too am going through a rough patch, not for the first time and not for the last. I won't bore you with the tedious details of what is hurting and how much but I've managed to get through the day by ignoring the hurt and getting on with things. I have also had more co-cos than usual because, by keeping them to a minimum, I leave that option open. My approach is that it's a case of mind over matter - yes, I mind but that doesn't matter. There is only so much that the docs can do for us, the rest has to come from us. Have you considered CBT? That could be a very useful tool for you to help improve the quality of your life. DD

Mat48

DD my main issue just now is that I don't know what is causing the nauseating nerve stuff everywhere. I am not as used to pain as you obviously but I do have enough experience of it to know how I can manage it when it's real pain. But this isn't really pain as I know it and, dim as this may sound, I have only just realised that it's pain nonetheless.

It's neuralgia-like and similar to the stuff I sometimes get in my sinuses when I've had a really bad dose of flu. However it's does not hurt much when I move my joints about which makes me wonder if it is arthritis at all. If anything it's worst of all when I'm still and it's the only type of pain I really don't know how to deal with at all.

I have been ignoring it as you suggest for many weeks, describing only numbness and pins and needles and ignoring the constant throb. I've been really busy with installing artwork for the past few days but ignoring it takes its own toll I feel? Having stopped the anti-depressant and having found that Naproxen makes me swell around the neck with fluid retention I now feel that drugs aren't helping me much at all with this thing. I see my GP tomorrow and really want clarification about what I should and should not be taking, bearing in mind that he felt this may well be neurological rather than neuropathic or mechanical. I don't want to take anything that might make things worse is what I mean. I did try a CBT site but it seemed to involve so much time on the computer and buying lots of publications - http://www.livinglifetothefull.com I think. Perhaps I didn't understand it but it's helped a friend of mine with his depression and I did at least try. Mat x

PS sorry you've been having things so rough too.

dreamdaisy

Pain becomes apparent in many ways, one doesn't have to be a genius to realise that. Broken bones hurt differently to earache which is different to ulcers in the gut pain etc etc etc. I watched a documentary on those who do not sense pain in any way and I am rather thankful that I don't have that problem.

CBT is time-consuming but there again the things in life that are worth- while very often are. (Your work, for example.) I know very little about the admin of CBT (or NLP) but, if it's worth trying then it's worth the investment. I learned early on to limit my life, to make things as easy as possible (much to my horror my low standards still have room to fall ).

I always have things rough, there's no news there which is why I don't broadcast it. Who needs to know? DD

Mat48

I know you always have things rough DD. I think you do occasionally broadcast it which is how I know - but then I absolutely believe you should off load. Of course I'm just being rather pedantic because I'm aware that you respond to others far more frequently than you broadcast your own woes. I only mentioned pain clinic because the person who I'm no longer friends with (post - The Friend) told me that there's a very good one in our hospital and currently, having tried too many powerful drugs in too short a space of time for my ridiculously oversensitive body, I thought this might be a better option for me too. I obviously don't come over as a person in much pain because, when I asked if I would be able to be referred, she said "no of course not - I mean people with really bad pain!?" and that silenced me for about a year and a half on the pain front! Like she would know? :roll: Mat x

stickywicket

Mat, the pain you describe sounds just like my RA when it was at its worst. I didn't ever have the numbness but I have always found shoulder pain particularly vicious and hard to escape.

I think, in your situation, I'd be asking myself if the anti-depressants had helped and, if they had, I'd still take them until either the GP said stop or the whole situation of cause and effect was sorted. Right now you need help to get through all this and, if the anti-deps provide that help, then go for them. I didn't know they could cause hunger but, even if they do, feeling hunger isn't the same thing as eating. I never have sweets, chocolate, cakes, crisps or desserts in the house so I can't be tempted on those fronts.

In Arthritis Care's latest magazine, an article lists 'Eight ways to manage stress. They are: 'Get active', 'Become a volunteer', Tai Chi and Qigong', Yoga, CBT, Autogenic Training and 'Get back to nature'. I know that some will be unsuitable while you're flaring but maybe one or more of them might help. They will certainly place demands on your time but mightn't it be worthwhile? It sounds as if anything would be better than this.

phoenixoxo

Hi Mat,

I'm sorry things are so tough for you at the moment. Pain that's undiagnosed adds an extra layer of 'aaargh', in my experience :?

Reading your posts, I wonder whether it's been suggested that you might have fibromyalgia. I apologise if this has been discussed already – I have trouble keeping up with things due to work pressure. It's just that the icy numbness and pins and needles you describe remind me of how a friend refers to the pain she has from fibromyalgia. She's had depression too and a bit of RLS. Anyway, here's some more info, courtesy of the NHS, with a lot of readers' comments, which might help too: http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Introduction.aspx

I hope your appointment goes well tomorrow

Best wishes,
Phee

Mat48

Thanks SW. The antidepressant my GP put me on had first listed side effect as weight gain which was a bit unfortunate - but like you I felt it was worth getting sleep again (sedation was the main reason she chose this one after 3 months of complete insomnia). And I too thought I could withstand temptation as we never have snacks about now only one son living at home (a healthy eating teenager - hates his acne!). But I found myself pigging on dry fruits, muesli, honey on oatcakes, dark choc found in the bin even - and eating bigger helpings. Also found myself having unwarranted outbursts of anger and wotnot. Husband asked me to come off it as he knew how much more depressed I might become if I gained weight back. I find it so very hard to lose and keeping it off has become my way of keeping control. I don't know if this makes any sense to you - but its just how I feel?

I'm partly anxious because I have to ask my GP about a strange lump on the side of my nose near my eye. Its been hiding behind my glasses for ages and I have been hoping it will just go away but it hasn't. I hope I don't end up having something real to worry about :oops:

I know what you mean about RA in the shoulders being the pits . I had it in both shoulders for months prior to diagnosis. This really is not in that league though - like all the other stuff its just like neuralgia not real hurting proper pain. Flu-like, sinusitis -like, that's all really but, like the pins and needles and numbness I get patches of it everywhere. X

Ps I've done quite a few on your tick list of helpful diversions - tai chi, yoga volunteering (lots) and they are very good therapy I do agree.

Mat48

Thanks Phee I will look it up - it has occurred to me many times but I don't want the doctors ruling out that it could be my RA or re diagnosing me with Fibro without being much more thorough with MRI and CT and ultrasound - none of which I've had yet. X

barbara12

Mat
You carry on unloading...its rotten when you are suffering like this..I just wish I could help more...good Luck with the appointment..(((()))xx

Mat48

Thanks so much Barbara xx

Toots

Can't say anything helpful Mat, but sending hugs your way x

Mat48

I like hugs thanks - that's all I wanted really! X

mig

Sending some much needed hugs.(((()))) hope you feel a little better soon. Mig

villier

Sending you some more ((((()))) think you really need to see a neurologist..............Marie x

Boomer13

So sorry you are suffering. Many hugs for you(((()))).
Anna

destiny0321

so sorry you are suffering bad at this time hugs coming your way.
(((((()))))))

Mat48

Thanks very much for my hugs.

I saw man GP today and told him that I'm "manning up" as middle son used to say and was therefore "fine"! He smiled and asked me how I was physically at any rate. I told him about the past few weeks of neuralgic -type pain and the continuation off and on of icy numbness in the legs and tingle. He feels that as I'm currently off all meds relating to my arthropay the likelihood is that RA is creeping about in the form of underlying inflammation in my connective tissue and joints. He examined my feet and said that he could find no swelling but the bits that were sore were clearly related to my RA. So he's given me a half dose of Naproxen to be taken regularly unless the fluid retention becomes too much. Given I don't see my rheumy again until end of November he feels I need some anti-inflammatory cover to tide me over as I won't take steroids (make me go nuts - enough of an issue for me frankly!)

I didn't tell him that I'm going behind his back to have blood tests in a private clinic next week for Vit D, Calcium, B12 and Full thyroid stuff (inc Free T3 which he won't take either). If nothing worrying comes from these then I can put them completely out of my mind as cause of the neuropathy but if anything flags up loudly then I will have to brave it and face him out with this news. I see woman GP just before I leave next week to discuss the depression and if I'm still finding it hard to "man up" sufficiently then I will ask her for a different, less hungry making anti-d. Mat xx