People with CFS/ PVFS/ ME - how did you get diagnosed?

[Grockle]

Long story short... After 2 years of symptoms, many blood tests, physio, chronic pain, constant fatigue of varying levels & GP not finding anything wrong, I am now depressed. It wasn't getting better with meds, so I;ve seen a psychiatrist who suggested it could well be CFS so has referred me back to the Rheumatologist.

I'm tired & just want to feel well.

Thanks Kate I really liked that post and the one it linked to. Not brave enough to post it on FB though!

Maybe another day for your chat grockle. Hopefully they will be approachable and kind about it!

I found out the clinic I'm going to is professor white's (although I guess it doesn't necessarily mean I'll see him?). He seems quite famous in the field. But he's a professor of psychological medicine, which is a bit weird. I feel uneasy now - is he somebody that thinks it's all in the mind?

I certainly don't think it is, but then I want to believe in treatments like GET even though that is controversial and lots of people are hurt by it... I don't know. I want to keep an open mind until I see them. This is probably my only shot at treatment (not a chance in hell of going private).

DH has his op tomorrow so very nervous, obviously mostly because of the surgery and its effects but also I'm really unsure how I'll manage on my own. Mind you I am feeling more faithful in humanity right now as a friend is taking DD to school tomorrow and another just dropped off an enormous cottage pie for us! :)

thank you for the link kate, i have posted it on fb, im sick of been asked if i am tired, and we are spending a weekend with my partners friends camping. i am drreading it, my close friends and family are used to me sloping off to bed because it is the only place i can get any relief, but what if these think i am miserable or lazy...........god why did i ever say yes to camping. my daughter however is so looking forward to her birthday. i have a cake to decorate, loft to unempty and pack for us all before lunch.....i must not be negative it might actually be fun. Fuzz i hope DH is ok, and you too, grockle good luck with your birthday weekend and everyone else hope you are surviving!

Hope the op goes well, fuzzpig.

Enjoy camping Belle - it really might be fun. Happy birthday to your DD. it's DS's birthday tomorrow - he's unbelievably excited!

happy birthday Grockle DS, my DD is 11 how old is DS. God what have i let myself in for it is pissing it down , we have 5 very excited kids, and i am so miserable, i have been baking all morning, then asda shop then packing!!! im cold i got pain and i am tired!!!! i am such a miserable cow!!!!

Have a lovely weekend Belle. I'm a miserable cow too but now have wine and that seems to help. Shame it's frowned upon drinking it at breakfast time.

I hope you don't mind me jutting in. I had ME for several years so do now how some of you are feeling.

Can I speak honestly and frankly but I mean well honest.

You lot are doing way too much. Making birthday cakes, sorting out everyone else, doing things that other people want you to do but you don't want to do.

If you had flu etc you would not push yourself so hard, so be gentle with yourself, not because you physically can't but because you are important and need to do what is right for you.

Learn to cut corners buy the cake, don't have 5 excited kids at home for a party do a cinema trip party where you can have a nap during it. Camping I am now well and really do not want to go camping and would say so

Grockle re teaching do sit down, get the pupils to come to you, do you have a TA who can do the running about work. It will do the pupils good to think of others and be more proactive etc

I do understand that I do not know the answers and what I have suggested may not be appropriate but the jist is go easy on yourselves and you do not have to do everything. There is nothing wrong in putting yourself first for a while.

Very good post Sally :)

just popping in before retiring to bed, DH had his op today, they ended up cutting some of the disc away so it took a bit longer than planned. He's able to walk which they are really pleased with but he's in a lot of pain so they are keeping him in for tonight at least.

Hope everyone's weekends go well x

Hope your DH makes a good recovery, Fuzz, and that you are able to manage OK. Try not to do too much.

Sally is right, we all have to find ways of managing ourselves. I'm always getting lectures about this from everyone who knows me it's really hard when you have been used to being active and involved in everything to suddenly be faced having to curtail things, but it has to be done.

Belle - camping? Just WHY? I hate camping and wouldn't go even if I was able, it's one of my nightmares.

Grockle, you really need to go back to the GP, keep a diary or something, even if you have to get someone else to write it for you. Then you have something to show him that backs you up. Same at work, you have to have a chat with them about what you can and can't do. I don't know much about it because I don't work and couldn't even if I wanted to, but they surely must have to try to accommodate you?

Can you guys still drink wine? I am 1 small glass pushes me over the edge and I start slurring and stumbling about even more than usual and then I am ill as anything the next day, not a hangover, just everything is worse. Makes me very rubbish company.

I'm pretty cuffed today, had BB on Thursday and a Food Bank meeting yesterday, so I couldn't walk by last night. Am sore, stiff and knackered this morning and my eyes and brain aren't working too well. However I have to get through the day, try to hang some washing out and the like.

Hope you all have a good weekend.

Thanks stressed I am really struggling to keep it together, I overdid it at work a bit and DH is home, my parents were up overnight but mostly hindering more than helping tbh. I thought this time would be different. I hate being so unassertive!

I did see GP on Wednesday and he said there was nothing they can do til I've seen the rheumatologist, other than sign me off so I can rest. I'm too tired to keep fighting. My legs hurt a lot today but I've managed a short nap this afternoon, so that was good. Off out for dinner with my family for DS's birthday. Much as I love birthday celebrations, I'll be glad when this weekend is over.

I am going to have a long, hard think about what I want to do, what I can actually do & what to do now. I'm really struggling but feel like I have to fight it & carry on til I collapse in a heap (which is what happened back in July). I think because I DO try to carry on, people expect it. If I went to bed for a week, they'd let me off. It IS like having flu - all the aches & shivering & hurtiness & fatigue, so I should probably treat it as such and lie down til it's better. Thank you for wise words & encouragement.

Fuzzpig, how is DH?

Grockle if the doctor is offering to sign you off and its only 2 weeks I would take that option.

I was just wondering about the amitriptyline, did you take it for a long time? I was told I have to take it for a month before feeling any effect at all and maybe increasing the dose.

DH is able to move around but still in pain and feeling pretty sick, that's normal though apparently.

I would let the GP sign me off Grockle, it can only do you good. Fighting against it and keeping ploughing on just makes things worse in the long run and brings on a big crash. (Good at giving advice, not good at listening!)

Fuzz, all the meds take a few weeks to kick in at all. When my meds were doubled recently, I was told to wait at least 2 months, and then go back to GP if I wasn't significantly better. I shall be paying her another visit at the end of this month, I think, because although I do feel better in muself, I still can't really do anything, iyswim.

Sorry your parents weren't much help, I think they are all the same, it can be like having extra children around. Hope DH gets some relief soon from the pain and nausea.

Apologies if there are a tonne of mistakes, I have clicked all the red underlines, but my eyes are still not working and my hands are starting to seize up.

Grockle When you think about what you can do - think about what you want to do. Don't give up the good things so you can do more of the mundane things. If you like working then carry on working but try to make it work for you. Buy lunches, have a few takeaways etc get a cleaner. Use your energy on the fun/good things. Re the birthday party dinner tonight - consider making it easier for you, make it lunchtime or get a takeaway and have a picnic in the sitting room. Still great fun, you are involved, your family really would not want you to make things perfect all the time - they would much prefer to have a happy not knackered Grockle.

Fuzz hope DH is ok. I was put on amitriptyline and all it did for me was make me sleep better at night. It did not get rid of any of the pains etc and I think made me more dozy in the day. I did get better though so do not give up hope.

Thank you all. That's good advice, Sally & I will take heed. Tonight's dinner was really nice actually. We went out early & DP drove so there was no hassle with taxis etc It was nice to do something normal.

I'm on amitriptyline & I think it does nothing but I take it anyway just in case!

Oh, I will think about being signed off. I'll go on Monday because I want to but will also see how I feel tomorrow.

Sally's posts are very good. I think I have done fairly well since giving myself permission to be in recovery and therefore rest. It is important to use your limited energy for enjoyment not just the boring essensuals of life.
Hope your DH is feeling better fuzzpig. Hope you can rest up Grockle a sick note is a good idea. Good you enjoyed your dinner out. I Am back home (sinus surgery) and hoping for continued recovery. We had a lovely holiday in a camper van that worked well with my need for rest.

Argh, I'm at home today. I had an awful night last night - shivering & aching, like I had flu but without the cold. I'm so fed up of being cold all the time, even when I know it's warm. I lie in bed with the electric blanket on and shiver. It makes no sense. I didn't wake up this morning so DP called work to say I won't be in. But I'm now sitting in bed, aching & cold but feeling ever so guilty.

stressedHEmum - not being able to tolerate alcohol is very common with ME.

carersfight.blogspot.co.uk/

This was posted in the comments of the Daily Mail I posted on Thursday

"A quote from Ian Lipkin......talking about his previous investigations into ME/CFS in the 1990's: "The one thing that did impress me [about the ME/CFS patients investigated] was that there was an enormous amount of immuno-activity that appeared to be non-specific in these individuals. So at a time when people were saying that this was a psycho-somatic disorder, I said: Two thirds to three quarters of the individuals whom we studied had polyclonal B cell activation. They're sick. We don't know why, but they are sick.""

Don't feel guilty grockle. You are sick, you need time off!

Thank you. I am now signed off for a couple of weeks and work are referring me to occupational health. I just want to get better.

I'm so incredibly cold... even in the summer when it was 28' outside, I would shiver and have goosebumps. I've had it all night & all day today - lying in bed on an electric blanket with hot water bottles & heated wheat bags but I just cannot stop the goosebumps & crawly skin feeling. Do any of you get this? And, if you do... what do you do about it?

I felt cooped up this afternoon so DP took me to collect DS from his childminder but I had to go in my wheelchair. Feel like such a pathetic attention seeker

I used to rest in bed with the electric blanket on Grockle - the only way I could rest properly as my muscles would just spasm from the cold. I still feel the cold or overheat easily but am not as forever cold as I used to be. There is a private hospital (too dear for my purse) that uses heated beds as treatment for ME - I think to encourage a healthy fever response. Any way that helped me accept that my enjoyment of lieing in a lovely warm bed was acceptable!
I cannot tolerate alcohol either.
Grockle good you have a couple of weeks sick leave. Don't feel guilty - I am sure I only started to recover somewhat once I treated myself as ill and needing to rest. occupational health have been really helpful for me so I hope they can for you too.

I get really cold and really hot as well. I just try to manage as best I can, tbh. Extra cardigan and socks that kind of thing. I don't have an electric blanket or anything like that but I do spend a lot of time sitting under blankets and the like or going to bed with my clothes on.

it's good that you are signed off, Grockle, the rest can only help you.

I am also really sensitive to temperature, always have been. Apparently it's common in people on the autistic spectrum. I am really feeling it in my joints now though - it's no wonder people have asked if I've been tested for arthritis! It doesn't help that our house is poorly heated/insulated. My duvet is my best friend ATM.

I am pacing myself quite strictly now while I'm off work, but there is so much that needs doing (DH was doing most of the housework before), believe me we aren't house proud but I have to do it regularly because if it builds up I won't be able to attack it (eg I can't stand up for long so can't wash up more than a day's worth at once). That plus the school runs and bath/bedtime are really draining me.

I want to keep on top of things but I also want to rest up as I'm back to work in 3 weeks. I am alternating household tasks with rests. Not sleep though - had a lovely child free nap with DH yesterday morning but it totally messed up my sleep at night. So I just try to 'go to zero'.

Fucking hell I am totally wiped today. Not in much pain (well, not much for me anyway ) just exhausted to my very core. I feel like I'm made of lead. Done nothing today except take in Tesco delivery and school run. Don't think I'll even be able to get the DCs bathed tonight.

Hope everyone is ok and not trapped in all this rain!

I am sure one night without a bath will do no harm Fuzzpig. Rain always makes me more achy too but I am lucky in that ds goes to school ( SN) by school bus so I can rest up by school day.