exhausted

[kateser]

I was given higher level ill health retirement in April due to rheumatoid arthritis I have since had foot surgery. The thing is even though I am not working I still feel absolutely washed out. There are days when it is a huge effort to get out of bed. I also have under active thro I'd taking 100 mc daily. when I mention this exhaustion to specialist nurse I am told it is part of rheumatoid arthritis and to pace myself. I am so fed up of feeling exhausted. In February I am going to have to find a part time job for finance reasons but because I have done the same job since I was 19 (now 52) it is not going to be easy. sorry to moan but sometimes it does you good to get it all of your chest

[petalnumber2]

Hello Kateser,

I've just logged on with the intention of writing a blog myself, but your blog, being very new and at the top of the list says just about everything I was going to have a bit of a moan about.........

The main difference is that I am 67 and drawing my pension, so I'm not having to worry about earning a living. I really do have a lot of empathy for people like yourself who have the worries of keeping a job down whilst coping with all the pain and tiredness.

However, I am looking after my very poorly husband who has a lot more to complain about than me, bless him. Like you I have struggled just to get myself out of bed and get going in the mornings and I'm really struggling to keep on top of everything at the moment.

This terrible overwhelming tiredness is driving me absolutely mad, and it's been relentless for many weeks (feels more like months.)

I too, mentioned it to the clinical nurse a couple of weeks ago and she uttered much the same words as yours did. She even suggested that I start walking to the bottom of the garden whilst timing how long it takes me, and try to shorten the time each day ! "This should build up the leg muscles in order to support joints better", she said.

She's right, of course she is, but if she were in my shoes she would know that it's a near impossibility for me to achieve at the moment.

This tiredness is not like normal tiredness, is it ? it really is overwhelming, total exhaustion, nothing left in the pot, feeling like a wet sack, kind of tiredness !!

However, there is a light at the bottom of the tunnel, for me at least, because I have decided to ask for a steroid (Kenalog) injection it my bot. I had one last year when I was feeling this low and apart from taking care of the pain it also lifted the feeling of exhaustion and gave me many weeks of relief. Not something to take lightly, I know, but you and other's like us will understand the desperation............

But, for the time being I'll be thinking of you when I struggle to get out of bed in the mornings and hope things get better for you. Take care, June xx

[scotslass333 in reply to petalnumber2]

Yes this horrible fatigue is a big part of RA - and NOBODY understands!! The last lady I talked with on the NRAS helpline said even most GPs don't (or won't?!) recognise it. So I supposed I shouldn't get so upset with friends who think I'm just lazy, or exaggerating....!

I did get told (by the Sjogren's Assoc helpline) that Hydroxychloroquine had helped HER own case of chronic fatigue - but after a few weeks on it, I came out in a terrible rash, so that was stopped. But anyway, thought it was worth telling people about.

[marushka in reply to petalnumber2]

Hi June,I truly feel for you and your every day struggle and i'm sorry to hear that your hubby is poorly too,you hit the nail right on the head when you mentioned the nurse suggesting the walk to the bottom of the garden,which to be fair as you said would be ideal if it were only achievable,but you know your own body and what it is and isn't capable of but do you know what? you are and will be an inspiration to many who will read your post.I will keep you in my thoughts and please take care xx M

[petalnumber2 in reply to marushka]

Hello Marushka,

Thank you so much for your lovely kind words, you've put a smile on my face which is good. So many of us are suffering so badly with severe exhaustion which really is life changing, but I've just read that the Dmard Hydroxychloroquine can help a bit for some people. Also I have just been reading an article on the "Arthritis Research UK" site which is entitled "Fatigue in musculoskeletal conditions". It is written by doctors and researchers and does give a bit of insight about the condition, no wonder cure I'm afraid, but it does help a bit if there is a bit of enlightenment and understanding ( all these long words, I think I must have swallowed a dictionary today !! )

Anyway, I found it useful reading and I hope it will help others if they read this reply to you. Take care of yourself, June x

[Hidden]

I was 55 yesterday and am facing a meeting this week at work about ill health dismissal. I have no pension to fall back on so will have to claim benefits. (not something I want to do but fear I will have no choice.) I know what you mean about exhaustion and being told to pace yourself as this happens to me and at times I dont know how I keep going. I struggle to get out of bed some days and have even fallen asleep eating breakfast. Gentle hugs. Joolz.x

[petalnumber2 in reply to Hidden]

Hi Joolz, it must be such a worry facing each day's work when you are having to cope with pain and exhaustion. I can't begin to imagine, and you must have about 10 working years in front of you before retirement, not that I want to wish the years away for you.

My RA didn't kick off until I was 63 and already retired, but my husband is a diabetic and now on dialysis since his kidneys failed, he is wheelchair bound and I do just about everything for him. Getting out of bed and facing the day is often a battle between my head and my body.

I wish you well with the meeting concerning ill health

dismissal this week, perhaps a bit of time to gather your thoughts and have some respite will help you see the road ahead more clearly. Gentle hugs from me too, June xx

[Hidden in reply to petalnumber2]

Thank you June. I am worried but trying to think of the positives that may come from it. It will give me time and that is precious. Gentle hugs Joolz.x

[marushka in reply to Hidden]

Hi Joolz,good luck at your meeting,it must be scary the reality of having no pension to fall back on but remember this,you have worked and paid contributions for many years and if you are entitled to benefits then hold your head high and accept the help that you deserve,just try speak with a welfare rights officer who will no doubt amaze you with their knowledge of the benefits system and what you are entitled to.take care xxM

[Hidden in reply to marushka]

Thank you marushka. I am trying to think that good things that may come from this. For one thing I wont be so stressed all the time which will help me feel better. Gentle hugs Joolz.x

[kateser]

Thanks guys. I am due to see specialist nurse in 2 weeks may suggest kenalog injection

[Hidden]

HI Kateser - I am in bed writing this. I can't even get down the stairs today having walked to the doctor's earlier in the morning - that's it for me today! This fatigue is so foul - I think it's part of the inflammatory process. My rheumy just raised his eyes and shrugged when my husband told him how exhausted I was. He said "she has RA what do you expect - and she does too much and this is the consequence".

But all I do - and I am often on the go very intensively it is true - is to keep myself busy and my brain engaged. It is my way of dealing with things. Then when I'm done I'm virtually wiped out and have days in bed. I'm 51 and a lot of the volunteering in the health sector - lay member of hospital inspections etc - I'm doing currently is partly to try and get myself a part time job as I've been a self employed artist for 28 years now and can't make it pay presently - too much work for too little money. I'm presently not on any RA drugs and fatigue, dry eyes and severe parasthesia are my main symptoms. A chap I saw for a second opinion 6 months ago, Professor Neil Basu, has researched and written about Rheumatoid Fatigue. He contributed to NRAS's RA Awareness Week which focussed on fatigue this year. Maybe worth looking up. Twitchy

[Hidden]

Can't get into this as have to register (too fatigued!) but if this is of any interest to you then worth registering to learn more - sometimes understanding things or just knowing they are acknowledged by such people is very helpful and cheering I feel. rheumatology.oxfordjournals...

[marushka in reply to Hidden]

Hi T,so sorry to hear your having a tough day, hope you feel better soon, as we all know what the wiped out feeling is like and sadly the medics we attend have such a braze overall opinion,no feeling,no real understanding of how it really feels if they were to be in our shoes for a few months trust me they would soon change their attitude for sure,sending you warm positive wishes to make you smile xx M

[Hidden in reply to marushka]

Thanks Marushka. Kindness here is very important and you are great at it! Tx

[marushka in reply to Hidden]

Hi T, when I first joined you were there for me so supportive and ready with advice,i'm just trying to give back to anyone who needs to have support and I know that joining this forum pretty much saved my life, as you know as when I was asking questions about strong positive ANAS it lead me to research further into my blood test report and when I linked this and the area of pain in my body I came to the conclusion I had in fact renal cancer,sadly I was accurate but had to fight my way to have the tests which confirmed it.xxM

[Hidden in reply to marushka]

Yes I remember this well. For myself it helped me learning more about this too because I had been a bit concerned after a drawn out abdominal scan which showed I had a large cyst on one of my kidneys. I have never had pain - but with Lupus like presentation of RA I was worried although the finally decided it was benign after about 40 minutes if rolling me about and bringing in other radiographers.

But my ANA was negative, urine clear and renal tests clear plus no pain around my kidney area so your knowledge/ experience helped me stop fretting.

So sorry that you had to go through this and fight to get the right diagnosis. How is the treatment going for you?

[marushka in reply to Hidden]

Morning T, at present i'm a bit in limbo lets just say,as I had the op 4 weeks ago so I guess when I next see my consultant 01/10/14 he will tell me what the next step is, as I gather he will have had plenty time to determine whether or not he has managed to contain the cancer if that's the case then no chemo or further treatment will be required,he did say I would have regular scans though just to keep an eye on things,its been a horrible time the past 4 months and I just want to get on with my post op recovery but my white cells have gone into over drive to say the least which is not helping at all,I had a house call from my GP yesterday as my temp keeps spiking still and the nausea is just awful,I blame the morphine, but GP is not so sure, so staying in bed waiting on the nurse to arrive to take more blood samples and urine samples,I do hope I can stay awake long enough to answer the door to her lol as this fatigue is taking hold,forty winks for me I think.xx M

[Hidden in reply to marushka]

Ah you poor darling - stay brave and awake - hope the nurse comes very soon. Twitchy xxxx

[marushka]

Hi K,sorry to hear all of your troubles but please, try keep positive and your still a young thing 52 is not old you will find a p/t job doing something you never dreamed that you would be able to do and be happy at it too just you wait and see,sometimes change is good as we can frequently become creatures of habit,as for getting things of your chest your in the right place here ,as I personally have found amazing support and even when I have been at my lowest the replies from the folk on here just always seem to come to me at the right time it's so nice to hear kind words of encouragement by complete strangers ,but to me on here is a very important part of my life,folk who know your pain and understand,so chin up smile from inside and you will find that fight deep inside you that will urge you to get up even when you really don't feel like it,I wish you all the luck and good fortune in the near future and I will keep you in my thoughts xx M.

[petalnumber2]

Marushka, you are a very lovely person yourself. such encouragement and understanding you give to us all. It's turned out to be an extra special day today, reading and joining the chat. Hugs all round, June xx

[Zigzager]

I am 53 & gave up work 3 yrs ago due to RA. Luckily I have some insurance on my pension. The tiredness is awful, and I suffer all the time from it, even not working. What has slightly started to help ( I know I know!) but I have smartened up my diet & cut out all processed food. It's only a week or two, but at least I wake up less tired I think. For years I have read your diet this & your diet that, but really I had no head space for it, along with all the meds & I felt I had a healthy enough diet.

The tiredness is terrible but the less you do the less you do, so try get a little even teeny bit of exercise. I am waiting on my 2nd ankle fusion, so walking is v v painful, but still I do even 5 minutes each day.

Really, tiredness is the untold story of RA, & no one understands.

Listen to your body, and look after yourself as best you can.

Xx

[dmc12]

Hi,

Just read your post and can totally appreciate your position. I am considering medical ill health retirement as I feel as though if I don't I will end up with no life at all. Some days are ok others I stay in bed until 11 ish and then have an afternoon nap. The fatigue is in my opinion the worst part of this condition as I never dare plan things as I hate letting family and friends down when I am too tired or ill to make events. I am taking permanent iron tablets as my iron is always low this helps a little bit and I have taken natural sea kelp tablets in the past which helped too. I hope you pick up soon.

Donna

[Wyaatch]

Kateser--I'm starting to realize that RA docs are very limited, in general about thinking outside the box. They have been trained to prescribe drugs in a certain ABC order. So when encountering issues of fatigue, like I reported to them with MTX, they cut the amount of MTX or ask if you are taking folic acid. When these kinds of steps don't work--they are a little stuck. I just had a few tests done by a natupathic doctor and we found low iron----I'm just starting iron supplements. We will see. There is Vitamin D--I haven't had that checked yet but a shortage can csuse low energy and fatigue. By way of your thyroid, I am also on thyroid and I think I'll look for a thyroid specialist as thyroid should be monitored every 3 months to check for changes--my GP doesn't do that. I know RA comes with fatigue but when they add MTX--why does it make some people even more exhausted?...You go from tired to almost comatose! We already have lowered immunity--why lower it more--? I ended up with pneumonia and the RA DOC then stopped it on my follow up, when I was over it. Strangely the CEFTIN and Zith antibiotics given for the pneumonia helped my joints feel better! I told the RA doc but no response. I said I wondered if they helped my Lyme ( I also have) and he said they don't use ceftin for Lyme--but Infoundbout they do! So that's another issue as Lyme mimics RA.Im saying sometimes you need other helpers in addition to the RA doc--to help you deal with the whole body--as the RA docs by nature of their interests in the pharmaceuticals omly--are a bit too limited in scope. The search continues for us.