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/

This odd and a bit random but leg hair was mentioned......at various points in my illness, my leg hair has fallen out and my ahem 'other' hair really thinned. The hair on my head is mostly fine but my eyebrows and eyelashes have thinned too.

candy I think the outer third of the eyebrow disappearing indicates thyroid issues, just FYI. My hair grows much more slowly ATM.

I have been losing a lot of hair (only on my head AFAIK!) since I got ill. Thankfully my hair is really thick anyway so it doesn't really show.

I am massively struggling with mood swings lately, I hate my brain.

Hello helibee! I have a 17 month old, too. If you need to put him in nursery, don't feel bad. He'll have fun meeting other kids. He'll still think you're a grand Mum. :)

I often feel like my life is a long string of problems -- I can't believe one of your friends actually said that to you! How horrible. She needs to adjust her attitude. It sounds like your attitude is great. You are doing what you need to for your sons, even to the point over agonising over putting DS2 into nursery to give yourself a needed and wee break. You sound like a dedicated and caring Mum, and your sons need you to care for yourself as well.

It's been another mad week at work, and I've pretty much missed my major deadline (Monday, no way it will happen by then, but I've also been told there is a remote chance of fixing things if I can do it soon -- it would almost be better to just know I've missed and move on, but I feel I still need to do what I can as I can, as it does have repercussions for everyone in the unit, although only incremental). Next week will be hard too, but hopefully things will settle. DH sent his thesis to his adviser yesterday, so has been able to help out more. Once he finishes completely, in a few weeks, we'll rearrange our lives a little bit and I won't be run quite so ragged (I hope).

Interesting about tubs making you tired. I really like hot, hot baths, which I can't get with DD around. But sometimes I stay in too long give myself a headache! Perhaps from dehydration/overheating. So it might be better that I can't take them.

I've not posted on here before but I could really do with some advice.

I have psoriatic arthritis and hypermobility syndrome. My knees and spine are currently acutely inlammed and bloody agony. I can't do anything much. I'm so pissed off.

Posted too soon. Sorry.
Anyway, as I was saying:
This weekend I went to London for the night (no choice I'm afraid). It was agony and humiliating. Despite taking copious amounts of naproxen and paracetamol, ibuprofen gel and freeze spray, I just couldn't manage the stairs on the tube. At one very deep station the escalator was out of action so I had to grit my teeth and climb. I cried with pain.
I can't walk my dog at the moment, can't do any gardening, can't even stand for more than five minutes. Is there anything else I can do/take that would help with the pain and get the inflammation down?

mrsharrystyles Welcome to the fold. Are you on any disease modifying anti-rheumatics such as; methotrexate? Also, do you have a rheumatologist? for you.

Hi just a quick message as needing a nap

Mrsharrystyles sorry to hear about your weekend. London can be a very difficult place when you are in pain. Have you tried the supplement MSM. My cousin has psoriatic arthritis and she takes that with Magnesium, selenium and zinc as well as good fish oils on her consultants advice and she has found it has improved her pain levels from a 9 out of 10 to 3 out of 10

she is also on DMards x

Welcome Mrsh (my 4yo DS loves Harry BTW :o)

I don't really know anything about arthritis as it was ruled out for me early on, but I know my manager swears by glucosamine for arthritis.

For pain relief I will be trying Epsom salts in the bath, and the jacuzzi thing I mentioned, also I use dead sea salts in the bath at the moment which does help a little when I force myself to actually have a bath!

Another thing my OT suggested on Thursday (sorry can't remember exactly what I wrote before!) was taking up some hobbies especially in the day if the DCs are at school and DH is training/working.

It's quite scary and also I feel a little embarrassed talking about doing all these fun things as I know most people get tired. I worry that my employers will resent it as they have been accommodating reducing my hours due to health, and now I spend time off enjoying myself instead of resting... I feel quite conflicted. But then the OT is very insistent that I do these things, and it's not like I'm getting paid for the hours I don't work of course. I'm learning a lot about myself, and fear is what has stopped me doing things for my whole life, not just since I got ill.

So, there's an art class drop in thing every fortnight in the library that I've been curious about for a while, but I've always gone straight home instead (it happens to start at the time I finish) so I am determined to go tomorrow. She also said I should join one of the book groups, but that scares me a bit.

Thank you for your messages.
I am on naproxen and Hydroxychloroquin. I have a rheumatologist.
I take fish oils and glucosamine bit haven't tried MSM etc. I will order some.
I will also try Epsom salts baths.

Has anyone tried an anti inflammatory diet?

Fuzzpig, my CFS OT also suggested spending at least some of my energy and time on things I enjoy and want to do. All of us tend to use our energy and time for things that must be done - (usually the boring and the horrid) . I think the theory is that if you are enjoying life , pain is better controlled. However I have found doing things for enjoyment whilst ignoring the housework difficult!
The CFS specialist has confirmed I can have both CFS and Pots - he said they are part of the same thing effectively (autonomic and immune system misbehaviour is part of CFS), and there was no reason to not try modified GET, as long as the cardiologist was happy.
I have wondered about taking MSM.
MrsH London and the tube network is particularly difficult for those of us for whom walking and stairs are difficult. There is so much extra walking in the tube station alone in many stations.
The spa bath I used on holiday was an inflatable one- a bit like a heated paddling pool. I doubt it is very robust, but it might be a possible solution for those who have the space and find it helpful. I think they cost about £300. ( I saw a similar one in B&Q). I did some gentle stretching in the luke warm water, which I think helped for a while.

Well my wee nap turned into a big sleep but the diazepam is still making me drowsy (why can't we have a sleepy and a gentle hug emoticon for these type of threads!)

Ds2 loved nursery yesterday they offered him his favourite dinner for lunch but he apparently he looked at them as if they were bonkers for even suggesting dinner at lunchtime. His key worker read his sheet at saw that his fav food was baked beans and he woofed down the lot

I'm going back to the GP in the morning. How did you get to see OT? Did the GP refer you? I know that I need more help around the house too as some days I cannot physically move my hands to hold a cup or go to the toilet without DH having to carry me

I'm feeling more positive than the other day and it helps chatting to you all and having your support. Thank you

helibee soooo glad your little one is enjoying nursery! Absolutely brilliant.

I would say make sure you are claiming all the benefits you are entitled to, but one of our posters found out you can be really seriously disabled by CFS and still 'not qualify' for DLA. So, that might not be much use to you.

But double yes to going back to GP!

Fuzzpig I used to make a lot of craft things and had some orders in the past but ds2 has used up every last ounce of energy I have. If he goes to nursery for a couple of days a week and I can get some help in the house then I'm hoping that doing something for me will help me to feel that I have a use in the world, not just the burden that I feel in DH and DS's at times. ds1 told his teacher that he needed to stay at home to look after me because I look after him when he's poorly and what if I wake up and need a snuggle (a big love heart) my heart melted and so did hers and she sent me a note home to tell me and to say that he got a special sticker from the HT for being so caring. His teacher last year said that in 40 years of teaching, she'd never met a wee boy with such a caring heart x

Thanks building, my GP is fab and she says she will help us apply for DLA. I already get ESA support group

Aww helibee that's adorable :)

My DD got star of the week in yr1 shortly after DH had a big operation on his back, apparently she was telling everyone how to look after their backs, showing them the physio exercises etc... was so proud in that assembly. It sucks being a disabled parent with all the guilt but I do think it helps our children to become compassionate adults.

Re: the OT, for me it is all part of the treatment package I get from St Barts, where I was referred by my GP. Basically I had my assessment where I was diagnosed, and then get a total of 30 sessions from their multidisciplinary team - this includes psychologists, occupational therapy and physio therapy, medical input from the consultant, and group therapy courses run by various people. The consultant helps you work out what treatment you need. For example he agreed straight away that due to my past (abused, self harm, numerous MH issues, basically I'm a wreck...) it would be sensible to focus on the psychological therapies. I am very glad I agreed to see an OT too though - I thought it'd be just one session but I've found it incredibly helpful and so it seems that the balance has shifted to what we originally assumed.

From what we assumed, not to, d'oh.

I was referred to the local chronic pain and fatigue clinic, who have a small team of a psychologist, OT and physio. I was assigned the OT to discuss managing my energy better. The next step should have been seeing the physio for exerts ice therapy but they discharged me because of the tachycardia.

helibee, glad nursery is working out. How funny about the meal! DD has no qualms asking for bananas at dinner even though we only give them to her for breakfast :) I feel a bit weird thinking I have to hide the fruit, but I think 1-2 bananas a day is enough for a 1yo.

magso, how does your tachycardia present? I find this bit about a connection between autonomic issues and CFS interesting. The thing that I have been diagnosed with is a dysautonomia, unspecified, but what happens is that I go tachycardic with mild exertion (like walking down a corridor) and also sweat loads. All under control with my meds, now, which really makes life liveable. I tried to go off them when I got pregnant and it was a disaster. This predates my severe fatigue, though, so don't know what to think about that. Probably had the dysautonomia for about 15 years (diagnosed 8 years ago), but only had severe fatigue for 4.

raggedy, I sound much the same as you - I get tachycardic (and severely breathless) with even the mildest exertion and also mildly after meals. I don't have any specific medication for it. My BP drops when I go from prone to upright. I used to keel over (faint) but now am better able to stay conscious. Its left sn ds at risk a few times as trying to walk him to his hospital appointments can be very fraught. I have no trouble driving locally as that does not involve exertion, although it does tire me out! I just think my ANS is dodgy!! I suspect it always has been a bit AWOL, as I used to faint often as a teen, over reacted to car sickness medication etc, its just whatever made me ill has brought it all back - along with heavy fatigue.
I am a lot better than I was, and think that is a mixture of pacing with regular rests, various supplements (magnesium, pantothenic acid B12 and other vit Bs,vit D, oils-ALA DHA etc,) and my latest wonder - D-ribose which seems to have made a small but extremely useful difference. I now have a cup of redbush with a teaspoon of ribose ( its sweet like art sweetener) everyday - and a second dose if working or other exertion is expected. Its expensive (£30 a bag- lasts approx 3 months once down to 5mg a day - you start off higher) If I was rich I would be buying a pack for every one here with heavy fatigue.
I am puzzled by the connection too. What the specialist said was the two things often go together, and he felt POTS was part of CFS. I am wondering if the poor ANS regulation can make it easier to get things such as energy metabolism really out of sync and make CFS more likely. There is a theory that mitochondria (tiny organelles in cells that function as the cell batteries) might be damaged in CFS and many other illnesses. Once damaged the mitochondria are slow to fix if at all. I can see how I could have pushed myself too far - I walked/crawled up a mountain with what turned out to be pneumonia. I probably had very low O2 sats for weeks which I can see could damage things- especially those things already not working well, or those parts of the brain most in need of oxygen (such as the control centres of the ANS). I am sure I had a milder version of most of my main CFS symptoms before I became properly ill. So there must be a connection. I wish I could get involved in the research!!

Did you have an illness or other life event that could have triggered the crushing fatigue.

Just found about a research project at Stanford about CFS...sounds exciting and is covering venous insufficiency (my thing ...narrow vein, poor blood flow from head) which is the first one I've heard of to cover it besides my consultant (although it seems others have in fact looked at this). Lots of other related things being looked at too.

Stanford article

I'm pootling along with my lupus fatigue and slowing learning about it and my daily available spoons. I wanted to ask about people's emotional state. My emotions are normally on an even keel but since I've developed fatigue they are all over the place. As soon as I get very tired I cry. As soon as I rest I feel better and my emotions return to normal.

I'm achieving so little at the moment that just picking up my son from school makes me tearful. I felt relatively good yesterday so walked the dogs and pottered about the house for an hour or so, intermittantly crying. I'm sure other people think I've got nuts.

Does anyone else get this? I don't feel depressed, I feel tired and emotional.

I get what you mean Accidental, by tired and emotional, without being depressed or sad. It seems to go with being close to exhaustion for me, when only emotion is left and I/m running on empty, and used to happen a lot when I was first ill. Its odd because before illness, wearing yourself out left a satisfied tiredness.