A Good Cry.........

puffin

.....is a form, an eventual form, of pain relief if only for a short while, so should not be supressed I think.
My bouts are daily, sometimes twice daily just now. When the sciatic and other nerve pain that starts as soon as I move out of bed becomes unbearable, despite meds., general pacing, activity, resting flat, hot water bottle and mental distraction, I succumb to feeligs/nature.
The crying starts, the jaw goes into spasm, I grimace and shake and frequently cough up mucus. If I try to keep walking I get more distressed and lose concentration

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I go doolally.
Thinking I need to eat something I open the fridge door only to shut it again. I can do that repeatedly, getting more distressed because I cannot work out what to eat!
More often I lie on the settee feeling very alone and helpless, knowing I have these bouts regularly but not confident I can continue to deal with them.
When an episode becomes serious in the form of a seizure I sometimes press the alarm I wear round my neck. Then I am eventually scraped off the floor and frequently taken to hospital.
So what does crying do? It is more than an emotional relief. In my case it must remove toxins via the mucus. The mucus will be the by-product of the inflammation in the nerves and elsewhere. I feel a little better after the big cry and can get up and act rationally---or at least as rational as I will ever be.


I would be interested to hear whether anyone else has similar episodes which add to the spectrum of distressing symptoms.
I have AS (it seems from my notes), fibromyalgia, severe ME/CFS, OA, stenosis, hypertension, etc., etc.

Must sign off and check my supply of hankies ready for tomorrow's big weep. Should have taken shares in Kl****x as well as toilet roll manufacturers, a few drug firms, a tinned soup company, a taxi, a supermarket chain and other companies.
Poorly Puffin

skezier

Hi Puffin,

h flower a huge ((((( ))))) and so sorry your feeling this much pain.

I also get to the point where bursting into teas is all that's left, the pain being relentless just now even trying to sleep. I don't feel better though after...... I just feel resigned I guess. Pain isn't a good friend at all.

Can they give you better or different pain relief for this Puffin? Hate to think of you in so much pain. I do the fridge thing sometimes, I look at stuff but know I can't open or peel things so good, carry a pan etc so just shut it and graze instead.... not good!

Its not always easy this bone stuff is it? Another ((())) and a hope it will soon ease up for you. Cris xx

bertyboy

Sorry you are suffering but if a good sob relieves things if only for a short while dont worry about it ,but do question your pain relief , crying is ok but if you still feel down after then thats not nice , hugs and tissues on the way x

dreamdaisy

Oh puffin, you sound at a very low ebb. Have you told your doctor about this? I think he should know, there may be something which can be done to help you. Be kind to yourself, and think about letting your GP know about this. I wish you well - you are dealing with a huge amount of ill health, it can (and does) take its toll on one. DD

puffin

Hi Chris, Bertyboy and DD,
Many thanks for your replies. Yes I am very down at the moment but then everybody usually is at this time of year. Hovever looking at last year's diary I know I was out regularly in January---not for long and in a lot of pain but out keeping the lungs moving. This year with weeks of snow, ice and now horrible damp I have hardly been over the door since November.
Had an unexpected conversation with a friend last night which helped. We talked about lots of common interests. It was the talking that helped, not just the topics

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a sign that I need to move my my jaws, not just through eating. Otherwise my head bends further and further forward putting a strain on my neck. Muscles at the front of the neck need to be kept as strong as possible.
Have extensive weakness in muscles due to spinal chord and other damage---a result of incorrect diagnosis, wrong treatment and length of time before my deteriorating condition was recognised.

The things one does at midnight

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Googled 'sciatica relief' and found Yo*Tu** videos on various exercises one of which differed from my set. Tried it once in bed and got some relief. Will see what today brings.

Bought a new exercise mat, one recommended because it is a bit thicker than the average ones. Unwrapped it to read it had no poly whatsits, no this, no that, but it smells very strongly of plastic foam so it has been shut in a cupboard. Weather just now is too wet to air it outside.
Must sign out as screen is jumping, probably because of static affecting keyboard mouse. Will tell you later of doctors' responses to my condition(s!).
Hope you all have as good a day as possible. At least next week, being the third week of Jan., we should see a more noticeable difference in daylight in the afternoon.
Puffin

dorcas

Hello Puffin,

So sorry to hear you have been at such a low ebb....a good cry when all else fails sometimes helps to get rid of the frustration!

I wondered when you last had your meds reviewed? there are so many nerve pain meds available..... and our bodies do become accustomed so the meds less effective... so perhaps as DD said seeing the doc and talking it all through might be a good idea?

I'm glad your friend phoned you and that you felt a little better by just talking to her. It does help having good folks around that you can trust!

We are here for you too Puffin... so keep posting! You might also want to consider phoning our great helpline? it does help to share how you feel and they are great at listening and in providing support and advice!

hope you have a better day today...

Iris xx

woodbon

Hi, Oh you poor thing, you sound so down and depressed. This is a bad year for aches and pains and its been far colder than last year. It must be depressing not being able to go out, even just to see a few different faces.

Still, spring won't be too long (I hope), and you should feel a bit better when the nights are lighter and its warmer. Have you discussed all this with your doc or nurse? You may be suffering from depression and be helped by medication. Just a thought. Love Sue xxx

skezier

Hi Puffin,

Just leaving you a ((((( ))))) Cris xx

dreamdaisy

Morning puffin, I hope that things are not too bad today - did you see anyone or talk to any friends over the weekend? DD

puffin

Hi Iris, Sue, Cris and DD,

Thank you very much for your kind messages. I don't know how you find the strength to respond to so many folk and so regularly. Sometimes I look at the posts and am overwhelmed by the number each day, especially just now. I want to help but never seem to get beyond reading to type one message.

There are four very large medals coming your way. Just by touching them, the chocolate inside will be the kind you like---Belgian, milk, raisin and nut, dark, organic, etc.

No, I did not see anyone at the weekend and just had one short call on Sunday evening.
Had hoped the Surgery would allow a home visit by the nurse to give me the 'flu jag which I had decided, at long last and in my weird wisdom, might be sensible to have. 'Could I come to the Surgery?' was the reply last week.
Very breathless and weak I felt unable to make it by taxi, sit, speak and return so I did not make an appointment.
Yesterday I thought I would try to walk 'round the block', which I did. I also staggered to the PO. in the afternoon. A snail could have overtaken me had it been a wet day.
Judgement, as usual, was faulty. I know I cannot 'build up' stamina. I walk in great pain and I end up with whole body inflammation which takes a few days to subside. Simples.
Heard today the Surgery has run out of vaccine. Have to phone again next week.

Weeks indoors + pain + fatigue= depression
Weakness + exertion + cold air + arthritis = misery.
The prices we pay!

Need a chocolate medal too I think.
Puffin

tjt6768

I am so sorry to hear that you are suffering so much puffin..
Wish there was more we could do other than be on here for you..
I'm having a bit of a tough time myself today for totally different reasons but have been on here keeping my mind off it ad much ad possible... It does help a little..

Be well.. Keep posting too

dreamdaisy

It is a difficult tightrope we 'walk' puffin, there is no doubt about that. I am trying to build up my stamina too - walking even with the support of the poles is tiring and painful but I remember when we were on holiday last year, and more had to be done, I did it and became noticeably better over the two weeks we were away. So, during one of my more wakeful nights - :roll: - I hit upon a plan, which I am now executing. It sounds daft, it is stupid, but I care not: it's working and that is what matters. It's lamp-post walks, or LPWs.

I started with one out, and one back, sometime in the first week of January, and weather permitting. The posts are nicely spaced up and down our road, I could either branch out up hill, or slightly downhill then hit the flat. I chose the latter - I am inherently lazy. I began with one out, and one back. No great distance, ergo not huge discomfort, but the feeling of achievement was satisfying. I stuck at one for a couple fo days, then moved to two. Absolutely fine. A few days on that, then three, and so I intend to build up until I can do a decent number, or a lap round the block. I live in quite a hilly part of town, the going up is fine, the coming down foul, so I shall tailor the routes as far as I can to avoid such inconveniences. I don't do the LPWs when it's raining - too much dressing up involved, and I am very wary of slipping. I may well look like some ungainly, clattering beetle as I stagger along, I don't want to prove it by falling over and not being able to get up again!

Set yourself a target that you can reach - good intentions often fail because the target is too high/too far away, and the ensuing dis-satisfaction is not good for the soul. Make it manageable, see where it leads. It's just an idea, but I hope it helps. DD

sunnyhours

Sorry you are going through this as well. I have the same problem with exercise as my back always hurts and my knees only hurt when I go for a walk (at least ).
I hope the pain subsides, if only a little

julie47

Oh dear puffin I am so sorry 1) for being late on popping in
and 2) that yo are feeling so very low.
I just want to send you some hugs((((((()))) and I hope that today if the sun is shining where you are (tis here) that it makes you feel a little better
Thinking of you
Juliepf x

dreamdaisy

Morning puffin, how are things today? I hope you are feeling a little better/brighter in yourself. Be kind to yourself and take cre. I wish you well, DD.

skezier

Hi Puffin,

wow chocolate medals You know me so well One coming back to you and this one has a jam and cream sarnie in it cus that's the best pick up I know.

Hope things are getting a little easier for you, its all to do with the stare of mind isn't it? if your ok that way it doesn't get to you so much but this bone thing drips at that part of you more than any other I think.

leaving you a ((((( ))))) and am still dreaming of the adapted quad Cris xx

frogmorton

Hi Puffin

I posted you a message on here and it's gone AWOl it was a day or so back :evil This loosing posts is a bad habit of mine

I only wanted to offer my sympathy and support and my hope that you are feeling even a wee bit better.

I send you some ((((())))))

and hope against hope taht things ease for you very soon.

Love

Toni xx

puffin

Hi Iris,Sue, Cris and DD,

Sorry for late response! I typed a post the other night but lost it

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was obviously timed out.

DD.--there is a name for you LPWs

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orienteering. The posts need an attachment for you to make note of/collect. Collect five things and you hit the jackpot---a big treat. Can you send hubby out (at night) to loiter with intent and organise the attachments. Serial numbers are no good, they are boring.

Yes my pacing skills are faulty. I blame the crash and burn on the oxygen exposure.

It is often a surprise that shortly after you have been thinking/talking of something that something happens or someone calls.
Had an e-mail from Pro-health (!) not long after reading your post, Seamonkey. It contained a reference to a website
'Treating Chronic Fatigue Symptoms and Fibromyalgia'.
There are articles about pacing and suggested steps for pain (relief) among other things, that I think are helpful either for a newly- diagnosed person or as reminders for the rest of us.
Do google it and see what you think.
Will post this before I get timed out and tell you about my latest history in part two!
Puffin

dreamdaisy

Afternoon puffin, it's good to hear from you. The LPWs have gone by-the-by at the moment, I dare not stray too far from a lavatory - :oops: . It takes time to learn the art of pacing oneself - luckily for me I am (by my very nature) inclined towards indolence, so it is a skill I mastered early in this malarkey! I hope you found the info you received helpful and relelvant to you - and I hope things are generally on the up. DD

puffin

Hi DD,
Sorry to hear you are confined like that. Every symptom is debilitating but frequent visits to the lavatory are very draining---oops sorry for the unintended pun.
Am that way myself today, blaming the freezing temperatures last overnight plus weak muscles.

Elimination. If we are not perspiring, we are coughing, sneezing (if the rib cage will move), crying, erupting at skin level or having to be close to the toilet rolls.
The body is speaking!
When not in one of those modes, it communicates via pain, stiffness, weakness, cold, spasms, fatigue, depression, etc.
We knock the signals back with meds., mental activity, rest and if possible sleep.
Finding/seeing one unexpected pleasure each day is a help. It can be posts here, a friend's telephone call, the blue sky and sunshine, the winter night sky, a little while spent on a hobby, a TV programme, as well as understanding and help from partner/children /pet if you have one or more of these----well not more than one partner.
Hope you all get an unexpected pleasure today.
Puffin

barbara12

Hi Puffin
Sorry I have only just seen your post, you have had good advice off everyone, I just wonder are you getting the right treatment, can you not get a review of your meds, have you been offered physio...maybe you have done all these things.
I do wish you well, and we are always here when you want to talk...or even have a good rant...
Love
Barbara x

spacey

Hi Puffin,
i am a fan of, have a good cry, get it out and then take stock. At home i am mummy who tries to keep calm and carry on, as i do at work. However my other condition often sees me packing a bag at 3 in the morning and getting a taxi to A&E with out waking the children and leaving hubby at home. On my own, in pain, fed up, and with kind nurses helping me I then seem to spend the entire admission crying. I get home and then try to be brave again until the next time! Puffin I am sorry that you are feeling so bad at the moment x

amielizzie

Hi Puffin,
I am so very sorry to hear of your conditions. I have to say i have immense admiration for you on coping with it! I hope you've found this forum helpful! I've been here for 2 days and already the replies to my post have made me feel so less alone!

Crying is so normal, i've gotten to the point where i have no more tears for my condition (severe post traumatic arthritis in my ankle) at 21 and after 5 years i've become used to it but the pain is unbearable. Reading your story however has brought me back down to earth you are such an amazing person to deal with all of that! why shouldn't you allow yourself a good cry!
I just wanted to let you know i'm here if you ever want a moan you can pm any time i have a blackberry so will always be on hand to reply and do all i can to send you a smile through a message!!
Keep your chin up =-) and if it makes you feel better cry your eyes out, although i wish you didn't have to at all!
All the best!
Amie x

dreamdaisy

Hello puffin, how are things today? DD

puffin

Hi Barbara, Spacey, Amie and DD.,
That was kind of you to post messages of empathy and support. I hope you are as good as possible, given all your different pains, exhaustion and the cold and sometimes dreary days of January.

Have had a quiet weekend catching up with basic chores, nothing too strenuous, and paperwork---or rather sorting and shuffling of that.
Last Monday I went for two short walks, one am, the other late afternoon because I had cabin fever and needed air. Tuesday saw the payback nerve pain down my legs and whole body stiffness but I concentrated on various jobs. Wednesday --the nerve pain had subsided from legs and hips and was localising in my back. Felt very shaky. Decided to languish on sofa with reading and sewing in the afternoon. Phone call from friend--a chat about common interests for half an hour---this around teatime. Ten minutes later a seizure type episode started, with all the symptoms I described before. I could not control these or think properly. Can only describe part of the episode as a kind of dementia .

Eventually I buzzed for help. Was extremely breathless and weak but managed to speak to the Community Alarm person who said he would contact the NHS 24. They rang back later. A visit from an out-of hours doc. was organised instead of the first idea to get me to hospital. Could not have had a nicer, more understanding lady doc. My BP was high and she said I looked as if I had been through the mill. She was concerned about my lack of follow-up appointments; neuro. and GP.
I emphasised these were incidents which I did not know how to deal with, unlike leg pain, shoulder pain, back pain, etc.

A GP from my practice came on Friday. At first she decided it was a panic attack until I explained about various symptoms and my stressless afternoon.
She is going to check my notes. Meantime I was prescibed more Valium to reduce the tone of the muscles.
Have had breathing tests on a spirometer at hospital before and at a former Surgery. Readings were not normal most times. Was prescibed an inhaler but told it probably would not help 'in my case'. Used it occasionally.
I suppose it could be bronchiolitis, fibrosis of lung(s), lesions affecting nerves or something else.

All I want is a strategy to cope with these episodes which must be inflammation.
Meantime continuing to take Gabapentin and Codydramol.
Puffin

seamonkey

Hi puffin,
I hope your doing not so bad today.
I know what a lift it can be to see someone of have a conversation with somebody. Can make one feel more positive.
I broke down and cried the other night. Felt good while i was letting it all out so i didnt force myself to stop.
When i had sciatica i found acupuncture really helped. Shortlived about half an hour but it was so worth it just for that little bit of relief.
You have my sypmathy for the symptoms you have discribed, so severe, and my respect for posting on here, I hope it helps you as it has helped me.
All the best and hope you find whats needed to get you through the day and night,
Seamonkey