Spooning into summer - life with chronic pain & fatigue.

[Grockle]

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

theory here www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

I'm having a pain crisis. I've been advised to come off any stronger painkillers due to a sudden onset illness that's making me very poorly. I'm off codeine and tramadol but the symptoms remain bad, so not sure what's the point of this little exercise. I'm struggling on with only paracetamol and it's horrendous. My pain levels have soared. What can I do?

Thanks - I'm not really in pain with my back issues atm, which is good. I'm just shattered. I feel sick, dizzy, groggy & hungover, despite having had nothing to drink. I have to work tomorrow & just don't know how to manage.

Amitriptyline didn't make me feel zonked, ginga... might be worth a try.

Candy - have you got a heated blanket or hot water bottles? Heat tends to help me much more than drugs. Hope you feel better soon.

Weird, thats exactly how I feel grockle, I cant really put my finger on it, i just don't feel right. I thought I might be coming down with something, but I've felt like it for three days and nothing yet.

My mum had the kids last night so I could sleep properly, see if that helped, and i didnt get to sleep til 5.30am!

I've recently started taking tramadol and thought that might be what was making me feel peculiar, but havent taken any since 6pm last night and no different

beyond, tramadol can continue to give weird effects for many hours. It often keeps me awake and even if I go off I have very odd dreams. Funnily enough, I have found the effects less recently but when I first had it I stopped altogether for ages as the side effects were too bad. As well as the sleep disturbance I also hD some terrible faints.

ginga, iIME physios with an interest in backs are the best but there's a lot of overlap. A good recommendation is usually the best option. Amytriptiline isn't as bad as you think, the dose is very slowly increased and the drowsiness does wear off quickly. For me it's been fantastic for sorting out night pain in my leg (sciatica).

Grokked and Matilda..

Thanks I saw gp today and been referred to pain clinic. I am very low keep crying snappy with kids and dh useless with emotion!
Work tmrw no idea how I will cope.
Askd bout amitryptiline told wait for clinic as I am co sleeping.

Oh Ginga What job do you do? Hope the pain clinic can be of some use to you. I'm going to the CFS clinic next week & am a bit scared.

ginga, that's so crap. My SIL also has severe sciatica and her GP won't prescribe amytriptiline even though she's taking stupid amounts of codeine.

When I was first referred to the pain clinic I was told there would be a four month wait for my first appointment. I literally went and stood in the reception at the desk and sobbed. They were very kind and I got the appointment two weeks later. I still had a five month wait for the injections, though. The system is sooo underfunded.

Another thought is to ask if any of the gps in your practice specialise in pain management and see them. Although you are taking anti inflammatories and codeine you aren't taking any of the group that work on nerve pain and it's bloody ridiculous that gps can't see this! I take both gabapentin and amytriptiline and of course I would prefer not to but they do help!

Getting information like this

www.nhs.uk/Conditions/Sciatica/Pages/Treatment.aspx

Might help. Good luck.

Ginga, I take lofepramine and have done right through bf and cosleeping. Its not guaranteed tricyclics will knock you out, depends on your individual reaction.

Note to dopey beyond. When GP gave tramodol prescription, she also increased AD dosage. That is clearly why I feel spaced out!

Hi everyone, I have M.E and a permanent pelvic disability from severe spd being pregnant with my dd (almost 3), basically a hole in my pelvis!

Is there a forum on mn for M.E / CFS, as I can't seem to find one? I'm on the parents with disabilities forum & the long term SPD thread : )

Really struggling at the mo as we have all been ill with flu / chest infections on top of everything else for the best part of the last 2 months now, had about 1 week where we were all germ free! DD just keeps bringing every germ going home from pre school again as soon as she's well enough to go back - seriously thinking of pulling her out til spring?!

All of my friends are either ttc baby no 2, pregnant with no 2 or already have 2 children, constantly asked when I will have another baby & I feel like a right freak for seemingly being the only female in my area to not feel like having another baby because of my health problems. It all really takes it's toll on marriage too, really yelled at dh earlier like I never have before because he was yelling at dd! : o

Welcome beabea. I don't know about posting elsewhere. I only post here.

I remember that phase, where everyone is pg with DC2... I'd split uo with exH & so more babies were not on the cards & everybody asking when I was going to have another would really upset me. I don't know why people think it's ok to ask that tbh. Some people still do it now. DS is 8 but it seems to not be acceptable to lots of people to only have 1 child.

Thanks Grockle : ) People seem to be quite insensitive when it comes to these things, they just can't accept it, & then if I express any sadness about not having any more kids in future, I get numerous ideas on how to fix all my health problems and / or the inevitable "oh you just have to get on with it". People have actually said I should sacrifice my health for the sake of giving my dd a sibling.

Anyway, it's nice to find others in the same boat on the stormy seas... Talking of drugs, I rely utterly on mine to get me through life with a crazy toddler physically! Hope to come off them when she's older & not needing me constantly running around after her / carrying her (she's almost 3 stone & the height of a 4 year old!). Beautiful beautiful girl of mine, I love her sooo much I can't even put it into words, I wouldn't change a thing no matter how hard it is or how much pain I'm in. It is bloody hard though, it's been brutal on my body. I'm on 100mg Tramadol 3, sometimes 4 times a day - but if it makes you feel spacey / odd / zinging at 2am - try Zamadol instead, I take this at 5pm for my last dose as it's the slow-release version of Tramadol that means you don't get those spacey / zinging side effects. Tramadol gives me the energy & pain relief I need to get through the day's activities, Zamadol means I'm not alert & wide awake at night, if that's any help to anyone xx

I tried Amitryptiline a few years ago but it made me so sleepy & when I was referred to the pain clinic after having my dd they thought Tramadol would work for me having M.E, as it gives me some energy as well as pain relief. I'm also on codeine & diclofenac as needed, but try to get by daily with just a couple of doses of paracetamol & ibuprofen. I do need codeine at the end of the day usually though. I love my heated wheat bags, and am going to get myself a heat pad too, and emugel prescription strength gel is good for pain & inflammation too I find. I see my physio every 2-3 weeks, would go every week if I could afford it : )

Hi guys,
That's all really helpful. I hope my wait for pain clinic won be too long matilda.
Grockle i am a counsellor so si down which triggers sciatica. Consistently taking meds helping but need to ge a wheat bag. Dont bave microwave how do i heat it up?
Bea I had spd. I imagine my twisted pelvis must have something to do with ds2. I really feel your pain about not having another. I desperately want to try for a girl but know my body won't survive. It is such a grief. But must be fit to care fit two boys who are up till ten each night and with broken sleep too.
Beyond I have been on ad before that's why I am worried about being drowsy.
What about exercise! I have some back yoga I try and this great gel but it's expensive need to get one on prescription. Last night was best in a while.nearly wept with relief.
Anyone else have numb and tingly leg symptoms too? I also have neck and arm issues and see osteopath when Icahn but so exoensive,
I feel pretty unsexy with all this. Used to be fit and healthy?
I was so depressed last few days scared me how low I got. Think need ad for pain and mood.

Sorry for typos on IPad!

Hi again. Ds is back at school so I can join in again.

Grockle I hope you are feeling a little better and your return to work has not exhausted you. Lisa I think I am in a similar boat, only a few years ahead of you. I was told the ANA test would be raised after inflammatory illness like severe pneumonia for some while. I was dxed eventually with CFS and am getting slowly more well. My life is different to pre-illness days in that I now know I have to eek out my energy, to do what has to be done. The CFS clinic I attended a year or 2 back were strong on trying to include fun and enjoyment in your life - ie prioritising some of your energy for relaxation and enjoyment. I agree with this but it has taken a while to implement. As a result our house is looking very tatty and neglected!! Certainly we have done no decorating. Ginga I get numbness, pain and pins and needles in my legs, but I have not got an answer. I think a seat wedge has helped when sitting. I think the necessity of resting for the ME/CFS is very difficult for dodgy backs! I don't know whether chiropractor or osteopath is better, it matters more that you get on and feel confident with the practitioner. Possibly osteopaths seem a little gentler perhaps. Bea I was advised to start very low with amitriptyline - half a 10mg tablet and work up slowly, to reduce the 'dozy' next morning effect. Candy how are you doing now. Coming off almost all of your pain medications must be very hard.

I have not posted for a while. I have been attending pilates classes and seeing my chiropractor regularly, - the one that believes all sorts of (my) ill health could be due to compressions in the spine impeding nerve flow. As my spine has several kinks in it ( its epsilon shaped) this could be. I possibly am a bit better in general (ME wise), but I have had a major flare up of my back pain. (I have lower, upper and neck trouble) She did warn me this could happen whilst trying to reduce the 'compensations'. However I have exacerbations from time to time anyway. I have finally made an appointment to see my gp about my back. I was very put off seeing the GP about my back years ago when my old GP was unhelpful, and chiropractors or osteopaths have kept me mostly on my feet. I am hoping for a referral to a physio - hopefully one with spinal expertise. I still use my various stick on devises - Tens and low current devise, and have discovered stick on heat patches ( thanks to Matlidas back thread).
You see I am still trying to find a way back from the CFS diagnosis!! It seems sensible to work on as much as I can. My sleep is much better than it was, so I have made progress on that front following the advice in the book from fatigued to fantastic. Obviously I don't think I am in the fantastic class just yet!!

Hello am gate crashing your thread. I am Grockles friend. I keep getting so ill and run down recently.

Have a chronic lung disease - brittle asthma. On lots of meds.

Years ago had post viral fatigue syndrome and was AWFUL - I remember it well and have so much empathy for anyone with that or similar.

Sometimes I am ok but sometimes I struggle. I get infections/ill a lot - I was born prematurely and have always been a bit like this. Getting tonsils out has given some improvemtn.

Struggling this eve. Slept all day. Sore throat, wheezing, coughing, no energy. And ironic bit...I need to tidy up for my cleaner coming tomorrow! I decided to get her as am struggling so much.

Ok sorry for the first post moan...will go read up a bit. :)

Hello, giraffes. Welcome. I feel like you do. And don't worry... this is a place to moan where we all understand. I gave up moaning in real life because I felt so negative and no-one understands anyway.

I am at CFS clinic on Wednesday. GP diagnosed CFS in addition to Fibro & Lupus diagnosed by rheumatologist but the clinic will do an assessment and stuff. I don't know what to expect or what to say.

So, yeah, tramadol apparently has no effect on me at all?
Is that normal? Anyone here have the same?

I just typed and sent a message...where did it go?!

beyond have heard of people with EDS not responding to pain meds - do you have EDS or similar?

Morning all. Woken with a cloudy head and sore throat. Paracetamol and caffeine here.

Yep, HMS was confirmed in December! I'd heard that it can affect anaethetic, and there was a poster on here the other day saying no painkillers work for her. I'll go and google now

Hi Giraffes (waves too). Sorry to see you here too, and poorly. My asthma is a lot better than it was so I am only 'slightly brittle' currently (touch wood etc) Asthma is tiring and very limiting on its own. Have just tidied up for my cleaner too! But sadly she's ill so isn't coming so I could have taken it easy. Still it needed doing. Do you take magnesium and vitamin D?

Beyond sorry the tramadol did not help. I do hope something is effective. Interesting (but distressing) that there may be an association with different pain medication needs and EDS/HMS.

Grockle hope the CFS clinic is helpful. On my first visit (on my own - there was a group briefing prior to that) I think I had to fill in a form - to assess my needs and severity. They talked to me, asked what hoped to gain from their support, then left me for a while and went off to discuss what to offer. They came back and told me that they would offer 3 talking sessions then reassess. But I am sure they are all different. I suppose it depends who you are seeing. Our CFS team has no doctor so you have to be referred by a doctor first- other teams start with seeing a doctor with specialist knowledge of CFS/FMS.

I had to cancel my gp appointment (to ask about physio) as I had forgotten (foggy brain) it clashed with taking my son to his hospital appointment. His school is 15 miles from the hospital as they are in opposite directions from our house. Will keep trying!!

Hi everyone. I took an internet holiday over Xmas, and enjoyed living in the moment a bit. But have been completely exhausted; first day back to work and I have no idea how I can manage as I was barely managing staying home all day!

I'm now in the 8th week of repercussions from the flu, but think I am finally on the mend. So the flu itself was considerably less extreme than I've had in the past, but the jab didn't save me from the secondary infections :( Yes, DH is definitely getting the jab next year.

Still waiting on my referral. I saw my GP for my second secondary infection (saw someone else for the first one), and mentioned that I haven't heard yet, and he's going to ask them about me again. I was a bit pissed at the not-my-GP I saw for my first secondary infection. She looked at my record and asked about the fatigue. Then, when I mentioned I was still BF-ing when she was prescribing antibiotics, she suggested I try stopping because she had felt less fatigued when she stopped BF her children. My fatigue far predated my pregnancy, much less DD, so I really don't see how that could help, other than add a bunch of unnecessary anguish and sleepless nights as we go through the weaning process. I really think that was uncalled for.

beabea there's a long-term SPD thread? Where? I'm still having SPD problems (DD is 20 months), although nothing like during pregnancy (I can actually walk, for example).

Sorry to hear about everyone's low points. I find it's really hard to positive in this dark, dank time of the year, especially when there are all sorts of people 'doing' stuff for the holidays and the distance between what you can do and what you want to do becomes so much more obvious.