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Spoons! Support thread for CFS, ME & Lupus sufferers

(938 Posts)
Grockle Mon 24-Dec-12 23:30:26

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

smile

Spoon Theory here

SirBoobAlot Tue 01-Jan-13 16:32:05

Its the internal pain after orgasm that is the worst for me (sorry!). I tend to wait until DP has fallen asleep, then sneak out of bed to find some pain killers. I have been known to cry with the pain afterwards at times sad Really bloody irritating.

Have had a very lazy day today as the rest of my week is busy.

smilingthroughgrittedteeth Tue 01-Jan-13 17:13:04

Its penetration at a certain angle that hurts for me, its like im being ripped apart
And deep penetration can leave me sore for days, ive been known to have a bath to ease the pain at 2am.

Weve had a relaxed day, played a board game and now were watching a dvd. Am off tomorrow but have got to take dss to get some wellingtons and new schooo trousers, the police are coming out to see dp and I tomorrow night, am working thursday and friday mil has arranged for us to gobto sil's so that she can get all the grandchildren together, im not happy about it sil lives about an hour away and it means we are going to have to take 2 cars as we wont all fit into 1, so I will have to drive, I dont drive further than to work anymore because the concentration involved is exhausting, plus we will be in the car for 8hrs on saturday taking dsc home.

Grockle Tue 01-Jan-13 19:37:41

What a frank discussion we are having! It's nice to be able to talk about this kind of stuff though so thank you.

Oh smiling sad The hip cramp thing is horrible, isn't it? I only get it if I am on top which is a shame because I prefer that although I get knackered too quickly these days blush

Deep penetration is painful for me too... I often wonder if I have PCOS or similar.

SirBoob... I once had horrendous internal pain afterwards. I was in agony and slithered accross the floor to the bathroom where I was sick. had awaful cramps and was contemplating calling an ambulance. The pain was horrific. I think it was caused by my period being 8 weeks late (my cycle is ridiculously irregular) and my uterus being, um, full. Sometimes having sex seems to cause my period to start if I am a bit late.

smilingthroughgrittedteeth Tue 01-Jan-13 21:09:06

I quite like being able to have a discussion about all the embarrassing things wrong with my body, I feel less weird knowing its not just me!

I get the hip cramp whether im on top or bottom but its worse on top and can be so painful it leaves me breathless.

SirBoobAlot Tue 01-Jan-13 22:26:29

If your periods are very irregular and you struggle with pain after sex, it could be worth asking to see a gynecologist. Am waiting for operation number two currently, which terrifies me because the CFS-induced sensitivity to GA was in full force last time. Took them hours to bring me round. Poor DP wasn't told anything other than "There have been complications, go home and we'll call you when we know what is happening" angry.

smilingthroughgrittedteeth Wed 02-Jan-13 09:30:38

I'd second asking to see a gynea, it took me 4yrs of pushing my last dr who just kept saying my horrific periods were normal and I should learn to live with it like other women hmm new dr got sidetracked by under active thyrod but once that corrected itself without meds because I'm allergic too synthetic thyroxine she agreed that I needed a gynea appointment.

He has been wonderful, and is fairly certain its endometriosis that is causing everything that is wrong with me, but then I've had other drs say they are fairly certaain its x,y or z and the tests always come back negative so I won't pin all my hopes on this diagnosis till after the tests.

The thing with endometriosis is that it has a wide range of symptoms and you might not have them all, I always thought it was irregular/painful periods, weight gain and painful sex, but the gynea says its a lot more and includes, cfs, thyroid problems, ibs, painful limbs, memory fog and more that I cant remember.

I have the memory fog, weight gain, cfs, a thyroid that either works or doesn't when it feels like it, cfs, ibs, painful/achy joints and heavy, painful periods BUT they are regular and sex is only occasionally painful.

All that is my rambling way of saying I think you should ask to see a gynea blush

belleshell Wed 02-Jan-13 14:38:23

im feeling a bit left out, either i arent doing the sex think right grin or i thankfully havent got gyne problems, which is a rare thing... i agree u should go see GP and ask for gyne review ( i know grockle your gp as been shit a ttimes)

today i have had a text from my mums friend (who died) son, asking if i knew if his dad was his real dad and can i help him find out..how the chuff do you reply to that!!!

GoodKingWenSOLOslas Wed 02-Jan-13 15:55:14

Look! It's me that's being left out! I haven't had sex in years!!! sad blush

weegiemum Wed 02-Jan-13 15:58:22

I'll join you. I've a neuro condition that's very rare and I get extremely fatigued between my treatments (once a month IV infusions).

I reckon I run out of spoons every day - I have lovely dh and 3 dc!

belleshell Wed 02-Jan-13 16:49:36

oooooooooo solo its not all its cracked up to be [ginn] welcome weegie......

we have a good old chaT on here, whats your condition called....xx

Grockle Wed 02-Jan-13 18:14:16

Solo, I went for a very long time without. And atm, I am not that keen as it's such a huge effort. I think DP & I are not going to last much longer so I will probably be joining you!

I didn't realise gynae problems could cause such a range of problems. Not once have I been asked about my periods or anything. I have added it to my list of symptoms to show the consultant but I'm not going to see my GP about it. I can cope, for now.

Welcome to weegie.

smilingthroughgrittedteeth Wed 02-Jan-13 19:16:55

Hi weegie welcome grin

I'm not sure if I've ever posted about why I went to the gp, if I have I'm sorry to repeat it.

I originally went to my gp 5yrs ago with low level tiredness and heavy/painful periods and was told to get on with it and put on the pill which made me bleed less but the pain was still really bad.

I gave up going to that gp but when I moved house 2 years ago I deliberatly chose a female gp practice, went to see them about my periods and the tiredness that never shifted still only low level at that point and they immediatly sent me for blood tests and a pelvic scan, the scan came back normal but the blood tests showed I had an underactive thyroid so that was what it was put down to, I took the thyroxine for about a week then got rushed to hospital it turned out I am allergic to synthetic thyroxine so was taken off it and put on the waiting list to see an endocrinologist, then the tiredness got worse, I couldn't get out of bed, felt sick and dizzy all the time, went to the gp and while there passed out, more tests showed that my thyroid was functioning fine, I then saw a cardioligist and had test after test after test until about a month ago when I went back to the gp and asked if I could see a gynea, we had got side tracked by the thyroid and other symptoms and had forgotten the reason I had gone to see her in the first place she agreed and refered me, I was lucky to get an appointment at my local private hospital and saw him 3 weeks ago.

Even my gp said its so easy to get side tracked by all the little symptoms that develop over time and sometimes you have to go right back to the very first thing that you noticed being wrong.

grockle if you are having pain during sex and painful periods then you really need to insist on seeing a gynea, I wish I hadn't let my first gp palm me off for so many years, perhaps if I'd persisted and refused to go away I wouldn't be at the stage I am now.

SirBoobAlot Wed 02-Jan-13 20:32:59

There are links between ME and PCOS / endo, unfortunately. I have been diagnosed with PCOS (lapraoscopy and blood tests) but still have all the symptoms for endo, as PCOS shouldn't cause pain.

They didn't find any endo during my last op, but to be honest (look away now if you are squeemish!) I had a grapefruit size dermatoid cyst that ruptured during surgery, so loads of gunk and hair shock went EVERYWHERE, along with my ovary being twisted around to the other side of my uterus, and the falopian tube twisted damn tight, so I am not entirely convinced they had the opportunity to look properly. There were then issues with my blood pressure and bring me around from the GA, so all in all it went well hmm

Now just waiting for them to cut me open again. Have already been warned about the possibility of loosing the ovary / tube that were twisted tightly, and the ironic thing is that is my 'better' ovary. It only has 12 cysts on it hmm and wasn't the one with the giant cyst (named Peppa Pig by DP because it was hairy!!!!). That was has around 20 cysts.

Hope none of you threw up blush grin

Managed to get through work today, though so drained now. Thinking I will have a reasonably early night, though I struggle to sleep before midnight. Appointment with the ME specialist tomorrow, am anxious. Haven't seen a specialist since I was pregnant.

Grockle Wed 02-Jan-13 20:39:22

Hope all goes well tomorrow SirBoob. Will be thinking of you. I am speechless about your surgery! I hope whatever is wrong is fixed easily & painlessly.

smiling, that is certainly food for thought.

smilingthroughgrittedteeth Wed 02-Jan-13 21:51:30

Good luck tomorrow sirboob

Police have just left after asking lots of questions but the text message from ex has been logged, dsc are in bed and dp left for work so I am making the most of having the sofa to myself before i can't put off the trip up the stairs anymore hmm

I still haven't recovered from babysitting on nye, I fell asleep this afternoon, sitting upright at the table blush, I can feel myself heading for a big crash but hoping I can hold it off till dsc go back to their mums on sat.

Working tomorrow then off again till monday grin

Grockle Sat 05-Jan-13 01:22:19

how are you, smiling?

and how was Mri, sirboobs?

just wondering if any of you have bleeding gums? mine bleed when I brush them & when I wake in the morning, I have dried blood on my lips shock

Solo Sat 05-Jan-13 01:54:31

No bleeding gums here. You should visit the dentist; make sure everything is good.

Grockle Sat 05-Jan-13 02:24:30

hmm, I'm going in a couple of weeks so will mention it . I'm bruising easily atm so wondered if it might be related? (also, the bleeding after sex thing) I'll add it all to my list of ailments .

smilingthroughgrittedteeth Sat 05-Jan-13 10:06:47

My gums bleed, dentist says my teeth are perfect <preens> so he doesn't know why they bleed, sometimes they are so tender I have to use a soft childrens brush to clean my teeth othertimes they are fine hmm

Just getting ready to take dsc back to their mums, fingers crossed she doesn't kick off we've had a lovely week and would hate for her to spoil it by making a scene sad DP worked last night and has had 2hrs sleep because she wants them back at 2 so I will be driving while he sleeps, or I would happily be curled up on the sofa with the dog.

Went to sil's yesterday which was nice but am sore and tired after spending 2hrs in the car and could do without another 8hrs in the car today.

I have an appointment for my laproscopy and hysteroctomy in march

fuzzpig Sat 05-Jan-13 10:07:57

Just briefly signing in again... have been off work since NYE. All of us got a bug (thankfully not as bad as norovirus but still enough to wipe me out). Am very lucky to have had lie ins every day though.

smilingthroughgrittedteeth Sat 05-Jan-13 10:09:35

Oh fuzz hope you feel better soon x

SirBoobAlot Sat 05-Jan-13 12:13:15

When I saw my dentist a while back, she was lovely, and said its quite normal for ME sufferers to get bleeding gums, and for their teeth to be in a worse state because we tend to snack instead of eating big meals, and sometimes just don't have the energy to brush our teeth. My gums bleed on occasion, I just make sure I brush them extra well for the week after blush

There are two cream eggs in my house somewhere, they are hiding from me...

MRI was terrifying, frankly. I kept as calm and as still (thank you, valium) as I could so that it was over with ASAP. Kept my eyes closed for a lot of it, didn't like it when the machine was shaking. At one point in the mirror on the head cage, I could see the doctors in the office frowning and pointing to the screen, where just before they had been laughing around. So I'm frightened now. Was also told to make sure I call for results by Wednesday, and was told previously it would be weeks. God I am so scared. Really hoping they were just playing farmville or something, and because its the new year there isn't much wait.

However. We managed to have a lovely day in an odd way! Went to the British Museum first (I'm an Egypt geek, and am slowly brainwashing DP wink), then to lunch, then to the hospital, which was highly disruptive to out plans grin By the time I got out of there, it was nearly 6pm, and because we got off peak returns, and there was no way we would get back to Victoria in fifteen minutes, we then had an hour and a half to spare. So we were sat on the bus, wondering what to do, then DP looked at me and said, "I'm taking you for tea at The Ritz." I laughed at him, but he was serious. So that's what we did. We stuck out like odd thumbs, and paid £13 for a pot of tea, but we didn't care. It was great fun, hilarious (we were making lots of jokes about them wanting to hide us in a corner etc!!) and very nice tea. We giggled all the way home.

So actually it was worth doing.

Just got my fingers crossed for results now.

smilingthroughgrittedteeth Sat 05-Jan-13 14:51:16

sirboob your DP sounds lovely grin

I've always had MRI results within a week so I would try not to worry to much, if there was a problem I'm sure the dr would call you before wednesday.

Have just dropped dsc off at their mums and been called a cunt again sad I have never been called a c**t in my life and now its happend twice in a week

belleshell Sat 05-Jan-13 16:56:48

smiling she obviously has a limited vocabulary...... and Boobs what a lovely unplanned day they are often the best....
We have a planned evening tonight we are going out for DP friends 60th......... does anyone else panic at the thought of nights out........i was never ever like this, but recently i dread them till i end up making myself worse or cancelling and today im trying not to do either......its not because i dont know anyone or im driving, i jsut dread the thought of waking up tomorrow and feeling crap.... my head is banging tonight for no reason ( other than i dont want to go.........i actually otherwise feel ok.)

its not that i dont ever go out we called at the pubs in the village last night but was home y 730 which is great, but the thought of going out at 730 terrifies me........

Fuzz ive been wondering where you are, hope you are all feeling better.

i joined weightwatchers this morning.....im 40 in June and dont want to be fat and 40...my problem is i dont fancy hot food, so snack on biscuits etc....... i really need to get out of this habit and eat better... im a contrdiciton in terms, my job is to advise people on diet exercise etc.........but i really dont take my own advise.. i have managed to walk dog ( well 10 mins round block) 3 times this week.........not sure it will protect my heart, but its a big improvement for me ME wise.

Grockle Sat 05-Jan-13 19:00:42

My teeth are perfect too so I don't know why my gums bleed. I shall investigate further.Interesting what your dentist said, Sirboob.

Sorry she's so vile, smiling sad I hate that word & would never use it for anyone. What a horrible woman. Add it to your list of things to keep for the police.

Sorry you've been unwell, fuzz. Feel better very soon.

Oh SirBoob, that sounds scary. They never got back to me about my MRI, so it must have been fine. In fact, my last one was definitely fine as the consultant sent me a letter to say what they've done, what tests they've done, what they've ruled out etc. He says I DON'T have Lupus. So, that's good, I think? confused I'm glad you had a good day otherwise.

Belle, I have the same problem. I can't eat hot food so snack on cereal, toast, biscuits etc. Which means I have got very fat. I have decided to begin this year with a different attitude - if I tell myself I am not unwell, maybe m,y body will believe me. So, I'm going for another walk in the forest tomorrow & I'm going to plod along as I used to & hope that it doesn't all backfire & make me really ill.

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