What to do - greedy for a proper break..!

Mat48

Hi All. I'm hoping for some advice on the icy cold numbness and costochondritis I'm getting just now. As I mentioned in a different post I was taken to hospital for a suspect heart attack a month ago when on an dopamine drug. The hospital doc explained that the tenderness and tightness around my chest and pain in my ribs was very probably RA related and not caused by my heart -which was fine. The rest (narcolepsy) was probably caused by the dopamine drug. I have had a lot of pressure on my chest ever since - assumed it was depression at first but now I've spoken to my GP about it and we are assuming it is costochonditis which is meant to be benign.

When I was down in Edinburgh I had some blood tests done privately to see if I could get to the bottom of the icy numbness in my feet and legs. No one in my medical team has been able to satisfactorally explain this and my ESR has only been raised to 39 a month ago so it was assumed that my RA wasn't flairing - despite being off all meds. The only blood tests I have yet received back have shown that I have the autoimmune type of hypothyroidism - which I suspected, that my thyroid seems to be okay on 100mg Levothyroxine, that I am gluten sensitive and that my Vitamin D levels are insufficient at 28 (below 25 is defficient - 50 to 200 is normal). I don't know what to do about this?

I have now started Prednisolone at the advice of the podiatrist I saw last week - who said my toe pads were swollen with RA. Because steroids usually make me bipolar for the first week I agreed to take 20mg only and on day three now I've found all the flu-like ache is gone apart from in my feet - and even they are much better so I've stopped hobbling. From shoulders down I feel loads better. And yet I was so hoping that the icy numbness would leave my feet and legs and the chest crushing stuff would lessen. It hasn't got worse but nor has it gone away at all. I've asked my GP by email if I can raise the dose of the Pred to 30mg from tomorrow to see if it's caused by inflammation but not heard back from him yet.

And how on earth do I tell him that I went private for all these tests and that my vitamin D is quite low when he lectured me four months ago when I requested it and refused to take my vitamin D. Shall I just supplement myself without mentioning it or do I have to be a brave person now I've gone this far? Sorry for being such a muddle head and for all the boring old drama. I do feel much better and happier now that the Prednisolone has taken away so much of the pain. I also phoned my consultant (how did I manage that I don't know I just phoned and was put through?!) and agreed to restart the Methotrexate in six weeks time if my GPs agree to prescribe it to me again. Can't bring myself to tell GP that either! Mat x

Mat48

PS GP has just replied (I know bless him really at this time of night!) to say that he would rather I stuck to 20mg Prednisolone for the time being and he's not promising that my "peripheral symtoms will go anyway but they might".

DebbieT

Hi Mat,

I think you need to bite the bullet, so to speak, and tell ure GP about the blood tests & the Rheumy chat.

This is YOUR body & you wanted ure vit D checked, I've no idea why you were refused but then I have FM & it's sensible for us fibro fighters to have vit D & B12 checked once a year anyway!!

Maybe they need showing that they were wrong so they don't forget to test others vitamin levels!!

I have a cyst in middle of my brain & symptoms that my neurologist says aren't related, my GP disagrees as do I, but she did bloods to check for things that could mimic these symptoms to rule them out. That's good doctoring in my opinion.

I really hope you find ure bravery Good luck.

Xx xX

That was good of him!!! x

Mat48

Thanks Debbie for empowering me to bite the bullet. Husband said the same. I think it applies just as much to RA and Hypothyroidism that we should be automatically tested for Vit D and B12. He did test the latter but I was taking a lot of folic acid at the time and this can skew the results so I've had it retested in a more thorough way with a test called the MMA (no results yet). I do feel annoyed about the vitamin D - especially as levels of autoimmune diseases are very high where I live and MS at highest levels in the world. He knows this of course and will be defensive because I think he's one of the people who has helped form policy on vitamin D testing in this health authority. I know I have to just tell him but how I do dread it?! Plus he's going away next week on holiday and I will never get an apt with him this week but I do want to explain it face to face rather than by email.
Mat x

DebbieT

How about a white lie then .....

Werent you were taken ill while you were away & they decided to test for lots of things & they told you to ring for the results?!

No ego bashed, no patient bashed (you) by Dr & you'll get the correct meds that way .... Just a suggestion. (I HATE confrontation myself but I'd also be keen to make sure they had the information!!)

Xx xX

dreamdaisy

Of course the pred has helped, it's a great masker of symptoms and lulls us so very neatly into a state of believing that things are better when they are not.

You made your choice so defend it. You didn't accept that his / her word was right so made your own enquiries. You had the determination to do that so I don't understand why you are now lacking the same to tell him / her that he / she was incorrect in their stance. DD

Mat48

Well DD I know you are right - about Pred and my mixed bag of courage or lack of. If I had fallen any lower into full deficiency ie three units lower I would definitely tell him the findings but as its only classed as insufficient (very insufficient) I fear that he will just patronise me again. If he does I then fear I'll flip a lid with his sardines advice (hate the things I confess!). I know he's a good doctor and has stick his neck out on several occasions for me by putting me on meds prior to my having an official diagnosis. Part of me is maddened by his doctor ego but part of me says I need to keep him on board with me as this is a very small place and I have no rheumy team as such apart from the big guy in Abedeen whom my GP defers to to a great extent. I wouldn't mind going back on the meth if I knew for sure it hadn't caused the peripheral stuff and if I felt that anti-tnfs were next in the agenda for sure. I too feel that Steroid only mask but apart from return to methotrexate I'm not being offered anything else and have tried and failed 2 other DMARDs. It just all feels very half baked to me just now but I can't afford to alienate my rather flimsy health team such as it is. The only person
who inspired my full confidence was the podiatrist because he specialised in rheumatology and is very experienced and was very firm but kind too. I know I need help but apart from him no one else seems sure enough about what is going on to give me this help. Husband wants us to move away to somewhere better for me but while youngest is stil at school its just a case of DIY. X

Mat48

Sorry I wrote that on little iphone and wanted to edit it but I couldn't so here's take two;

Well DD I know you are right - about Pred and my mixed bag of courage (or lack of). If I had fallen any lower into full deficiency ie three units lower I would definitely tell him the findings but as its only classed as insufficient (if very insufficient) I fear that he will just patronise me again. If he does I then fear I'll flip a lid with his sardines suggestions (hate the things I confess!). I know he's a good doctor in some ways - works very hard round the clock as I can see from his emails to me - and has stuck his neck out on several occasions for me by putting me on meds prior to my having an official diagnosis of RA and then giving me a dopamine drug for possible RLS.

Part of me is maddened by his doctor ego but part of me says I need to keep him on board with me as this is a very small place and I have no rheumy team as such apart from the big guy in Aberdeen whom my GP defers to to a great extent and who sees me very rarely.

I wouldn't mind going back on the meth as my rheumy suggested on Friday if I knew for sure it hadn't caused the peripheral stuff and if I felt that anti-tnfs were next on the agenda for sure. I know that Steroids only mask things (although they do more than this by lessening inflammation which causes the damage) but apart from return to methotrexate I'm not being offered anything else and have tried and failed 2 other DMARDs. It just all feels very half baked to me just now but I can't afford to alienate my rather overstretched (and disinterested) health team - such as it is.

The only person who inspired my full confidence was the podiatrist (whom I saw down south privately but has now put me onto his nhs list up here) because he has specialised in rheumatology and is very experienced - and was very firm with me about the need for drugs, but very kind too. I know I need help in the form of effective drugs - but apart from this foot specialist no one else seems sure enough about what is going on to give me this help. Nor will they refer me - which makes me think they assume the neuropathy is all in my head or part of my RA (or both). Maybe it is but I would like this to be discussed and to have everything else ruled out before going back on a drug that I found very difficult to cope with. GPs did take me off it in the first instance after all.

Husband wants us to move away to somewhere with a proper rheumatology service for my health and sanity - but while youngest is stil at school its just a case of DIY and seeking advice where I can. X

Mat48

How about a white lie then .....

I wasn't taken ill as such - just flaring like mad as GP already knew. And if I had been tested by anyone other than a private clinic he would have been informed anyway by whoever ran the tests and he will know that. Plus I'm a terrible liar!! :roll:

DebbieT

I replied to this earlier but my mob decided to crash :?

I was actually half joking with my suggestion. I totally expected you to tell the truth

I do think you may have a tendency to think too much about ure health & that could end up causing you far more worry than perhaps is necessary!!
Maybe trying to self diagnose, tho it's proved useful for the vit D, isn't all that healthy for you in the long run, it must take such a toll on ure mental & physical health all the time. I really feel for you. ((((( )))))

Did you ask about the possibility of fibromyalgia? I noticed it's been mentioned to you by a couple of different people!! I understand why you don't want it to be that as it doesn't give you the specific answers you want but it would explain a lot too.

Please don't let a change of school be the only reason stopping you move!! I, & many others, cope extremely well with a change, in my case many changes due to having a Dad in the Armed Forces. It can be an adventure

Good luck & take care. Enjoy the relief the steroids are giving you

Xx xX

Mat48

Thanks Debbie. Yes I think my symptoms could be Fibro sometimes but I've asked and they tell me its RA because of raised inflammatory markers etc. The podiatrist was very specific and said swelling in my feet could only be RA because of the synovial swelling and he felt hands and wrists were similarly affected ie swollen knuckles and my general demeanour and gait were very RA. I know you can have both and if I was told that icy numb legs and chest ache in sternum were all Fibro - as I know they can be - I would take this on the chin. I'm probably becoming too obsessed and thinking too hard about it all.

Re son - he is sixteen and only has a year and a half left at school so I would feel loath to disrupt his education at this late stage. But when he's finished then our adventures can start. If I had a proper rheumy team I know I wouldn't think about my health all the time - would leave it to others with specialist training and just get in and obsess with my work as an artist again! :roll: sorry for banging on! Xx

[Deleted User]

The following is probably totally daft, but I'll write it anyway.
Coldness in feet an hands or arms and legs could also be caused by a faulty blood- circulation. I have a very simple remedy to keep my circulation running. And in cold weather it helps well to get arms and legs warm again. It's a simple cold water treatment with your shower. If you can bring yourself to do that, it helps a lot. You have to start with your feet, moving upwards to your hips in a slow, circular movement. Then down again. You do this 4 or 5 times. Same with your arms. Just try it out.
As I said: You probably find it daft.

Mat48

Hey that's not daft! Or certainly no dafter than the symptoms themselves anyhow. Happy to try it tonight. I think its all circulation related too - either that or vascular because of chest stuff but think circulation much more likely.

So can I get this straight . Do I shower in cold water only or hot then cold? - or the other way around perhaps? Circling hips not an issue at all - this is one of main exercises I do to keep myself mobile anyhow. Bit freaked at the thought of a cold shower but hey if it works I'll be forever indebted to you!

The main feature of icy wet sensation plus tingle is that it gets much worse once I'm up and about and continues to worsen over the day so by night time is chronic. The RA pain has now largely gone with the steroids - however when I walk the dogs (no longer dreading lead holding or hobbling badly) and do my daily workout I then feel the icy stuff coming on so badly that I have to keep touching my trousers and socks to make sure they aren't cold and wet - ankles feel tight, icy and revolting already and I'm only just getting ready to go out. Since the pain has lessened in feet the wet cold sensation seems to be just as bad in them too as if all the warm padding has been stripped off? So does this correspond with your circulation idea I wonder?

I know I'm being very obsessive but I genuinely do feel as if I've come out of a deep bog without waterproofs all the time for the past three months. Its very unpleasant and unsettling

[Deleted User]

Sorry, I think I did not make myself clear. I'm a bit stressed today and apparently that has a negative effect on my english
No cold shower at all! The cold water is to be applied in circular movements of the showerhead on your legs and arms only. From the feet up to the hips and from the hands up to your shoulders.
Oups- sorry again. Hope you understood this better!

dreamdaisy

I have a feeling that if you were under the most expert care available in the UK you would still be over-thinking, questioning and going your own way because that is what you do (you've admitted that yourself). The detail you go into about your various symptoms is, to me, quite frightening, so it's little wonder you end up being very wound up and anxious. That is, however, your nature and that is not so easily changed.

Maybe it's because I live on the mainland and my GP has a couple of thousand other patients as well as me that I have never bothered emailling her. I've never emailed any of the health professionals who deal with me. I wonder if this route you take also fuels your anxiety? DD

PS. I don't want a break because it will never go away. I have arthritis, end of.

Mat48

Oh well DD - we are quits. I find your attitude quite frightening sometimes too :? My GP responds much more readily to emails than phone calls - this type of communication suits his slightly anal nature well and its much quicker to deal with his patients this way if they are able to use it easily as I am. He is a very busy man - away often - and sits on our area health board.

Email has its disadvantages of course but as I have two profoundly deaf sisters who can't use phones and live far away from me - am the oldest of three and parents both died relatively young and very suddenly - it has become a very easy way for me to achieve things fast in all aspects of my life. GP and I may have an email communication stretching over a day every few weeks - that perhaps takes up ten minutes of his time at the most. Included in these communications recently have been stuff concerning my youngest son and some medication he had not yet been sent - so I take a very pragmatic attitude to most forms of communication - despite what you seem to think.

I don't mind your bluntness DD - I have grown up with straight speaking people all my life. However I come here usually to give or receive support to or from like-minded/ similarly situated people so if you find my style over descriptive and a bit obsessive and frightening then maybe you should avoid reading my posts in future? I'm trying not to allow Prednisolone to flumox me (it makes me go bipolar and makes my heart race) so I badly need some zen-like warmth just now. I'm awaiting CBT talking therapy so that may help make me less frightening once I get it - but I wouldn't count on me getting it any time soon with an overstretched health service!

DebbieT

Hi,

I don't know why but in my head ure child was in Primary school!! I understand ure reluctance at this late stage.

I don't doubt ure RA diagnosis at all Mat I was thinking along with it!!
I have a list of symptoms, these are known fm ones. I've taken it from my site.

There are 63 symptoms of Fibromylagia - with more being recognised all the time.

PHYSIOLOGICAL PROBLEMS:
__ recurrent flu-like illness
__ recurrent sore throats, red and injected
__ painful lymph nodes under the arms and neck
__ muscle and joint aches with tender and trigger points - up to 18 of them
__ night sweats and fever
__ severe nasal and other allergies
__ irritable bowel syndrome (IBS)
__ weight change - usually gain
__ heart palpitations
__ mitral valve prolapse
__ severe PMS
__ yeast infections
__ rashes and itching
__ uncomfortable or frequent urination
__ interstitial bladder cystitis
__ chest pains (non-cardiac)
__ temporomandibular joint dysfunction (in the jaw)
__ hair loss
__ carpal tunnel syndrome
__ cold hands and feet
__ dry eyes and mouth
__ severe and debilitating fatigue
__ widespread pain
__ other chronic illness(es) usually present (like diabetes, hypoglycemia, asthma, lupus, ms, etc.)
__ numbness in the limbs, not painful like pins & needles
__ painful swelling in the hands, legs, feet, neck
__ GERDs (gastro-esophageal reflux disorder)
__ “growing pains” start in childhood and teens, continue into adulthood
__ widespread body pain during/after physical exertion
COGNITIVE FUNCTION PROBLEMS:
__ attention deficit disorder
__ spatial disorientation
__ calculation difficulties
__ memory disturbance
__ communication difficulties (problems speaking, confusing words)
PSYCHOLOGICAL PROBLEMS:
__ depression
__ anxiety and panic attacks
__ personality changes, usually for the worse
__ emotional lability (mood swings)
OTHER NERVOUS SYSTEM PROBLEMS:
__ sleep disturbances
__ headaches
__ changes in visual acuity
__ numb or tingling feelings
__ burning sensations
__ light headedness
__ feeling 'spaced out'
__ desequilibrium
__ frequent unusual nightmares and disturbing dreams
__ tinnitus (ringing in the ears)
__ difficulty in moving your tongue to speak
__ severe muscle weakness
__ susceptibility to muscle, tendon, ligament injury
__ intolerance to bright lights
__ intolerance to alcohol
__ intolerance to sound
__ extreme sensitivity to medications and their side-effects
__ alteration of taste, smell, and hearing
__ insomnia
__ inability to achieve stage 4 restorative sleep
__ morning stiffness in the muscles and joints
__ restless leg syndrome
__ muscle spasms
__ muscle quakiness and shivering during/after activity or exercise
__ sleep paralysis (related to stage 4 sleep deprivation

I know it's a shockingly big list It's certainly no fun to have but it is becoming more recognised especially by rheumys.
It's easily tested for by a series of questions & tender point tests, Like with PsA I was an easy diagnosis as I had all 18 points, OUCH!! It's just a thought.

((((( )))))

Xx xX

dreamdaisy

I always read your posts and always will - it's just that sometimes they are difficult to answer because we are so different in how we approiach matters. I don't ignore everything, I have learned over the years when to take action and when to battle on. I think there is a tendency for all of us to blame everything on arthritis but sometimes other rubbish happens just because it can; it's distinguishing between the two which can be tricky at times - and of course being accustomed to living with very low standards of energy (and high levels of pain) doesn't help.

I am pleased to read that you have made some enquiries about the CBT and I hope you hear something about it soon. You seem to be feeling the benefit of the pred so hopefully you can stay on your current level with no further deterioration with its side-effects. Surely the zen-like warmth you feel you need has to come from within - I wish I could provide some but I am somewhat preoccupied with my current life-matters; my apologies. DD

Mat48

Firstly Debbie - well what a very long list is that! I have some of those indeed - as I suspect many people without Fibro do too. I think I have the key ones but my rheumy told me on the phone that he suspects mine is all RA - but then I get increasingly convinced that having RA and PsA and all the other inflammatory autoimmune diseases include Fibro on their menu now. Interesting though and many thanks for posting it!
Mat x

Mat48

Yes DD we are very different people that's all. My woman GP, who has referred me for the CBT, says it seems completely understandable to her that I may be a bit bipolar (not diagnosed with this clinically by the way) because I'm of a creative disposition. I think I manage myself quite well mostly, despite having mental illness in my genes and some fairly major stuff thrown at me from the age of zero (as have many others of course).

But probably, in the context of this forum and with all that goes with finding RA has landed, I do reveal this side of my nature more on here than I'm aware. But as with arthritis this is just how things are. I don't expect you to give me a warm zen glow ever DD (by warm glow I don't mean gushy touchy feely either - just kind and sensible is what I would like if anything). I just don't want you to be critical of my inner workings in response to a call for help.

DebbieT

Yes it is very long, that's why it's been so hard to diagnose in the past as they have to rule out so many other things first!!

I was lucky that my rheumy had an interest in fm & wen I had 'unrelated' pain etc she tested me without my knowledge, I'd only vaguely heard of it b4 then. I got diagnosed on the spot in my routine appointment.

They are close to a blood test in USA. It's suspected to be a combination of our immune systems, Central Nervous Systems & Nerve clusters in our palms that cause it.

Ure welcome.xxx

DebbieT

Mat & DD,

I don't think this back & forth between the two of you is very nice. Ure both different people with different attitudes, I'm sure no offence was meant on either side but its uncomfortable reading!!

Perhaps things ought to just be left now? Agree to disagree perhaps!!

Thanks.xxx

Mat48

Apologies Debbie and anyone else. I agree no more testy responses from me to DD. Sorry DD.

I think the Fibro stuff is all built in to the autoimmune package as you say. My rheumy said something interesting to me on Friday. He asked me why I find it hard to accept all the flu-like pain and other stuff as being RA - was I querying his diagnosis. So I explained that I'm a visual person and find it very hard to accept or believe in stuff I can't actually see (I only apply this to myself though). He thought about this and said he understood this better once I explained this to him because rheumatologists are tactile by nature and don't trust stuff they can't touch. This the irony of this comment was not lost on me as I struggled to find a vaguely comfy position to keep speaking to him on the phone from! Mat x

DebbieT

Thank you!!

Maybe, as you are a visual person, seeing ure CRP, or is it ESR you have, Well which ever ... That's proof of inflammation, would that not help you? I really hope RA deformities don't have to occur to convince you That would be awful especially for ure art!!!

I have had to learn to believe pain even if I have no visible proof of it. The brain cyst & especially the neuropathy I get has been a weird one to wrap my head around!! I saw the cyst but not the symptoms I KNOW it's there so why do I still doubt wot my body feels? It's an odd one, rather like me

dreamdaisy

I apologise for upsetting you, Debbie, that was never my intention and I am sorry that you have been affected by our 'debate'.

Mat, you have no need to apologise, it is obvious that you are struggling and I know from experience that when one is in the middle of things one can feel trapped in a Catch 22. I hope that things soon settle for you, especially as you have a family visit coming up soon, is that right? DD

Mat48

Yes that's right - middle son home from uni for first time and sister up for a week too. Must get cleaning now actually. Mx