Fatigue

[Blues1]

My fatigue is still a problem , can't walk far and any extra jobs seem impossible at the moment. I am still on on 20 mg dose of Prednisolone no confidence to drop any further. Before my diagnosis when my gp sent me for physio for lower back pain and shoulder probs my physio did a hypermobility test and my score for that showed I have hypermobility syndrome. All contributes to my problems I suppose. It's all getting me down.

[SheffieldJane]

I am sorry that you are feeling down. We have plenty to hang it on when we are don’t we? The last time that I had a phase of “ deathly fatigue” caused by my PMR, I devised a routine for myself that included a regular nap at the same time every day and a reasonably early night ( 10 ish). I found that this stopped the fatigue leaking into the whole day. I napped even on a bright day, when I didn’t want to. It helped my low mood, which often seemed linked to fatigue. I would wake up in a better head space and make tiny plans for myself and get the odd thing done. After a while of respite from it, I am now swooningly tired again at 5 mgs - this time due to my Adrenal glands struggling to get going again. So I am back to my siestas which I rather like really. It is very important to pace your activities too and do restful things between a planned task. Try not to get frustrated, it’s hard when you’ve been an active person who gets things done. Your job is to get yourself well and strong now. Who knows why we get these diseases. With me, looking after my poor mum with dementia (7 years) whilst dealing with a distressing family situation did for me, I think that working with the victims of domestic violence made me angry ( inflammation) for them. I genuinely do need this quiet time. Take great care!

PS. There is a website for Hypermobility Syndrome, if you google it. This might help you to gain understanding of how this impacts on your experience of PMR.

[Blues1 in reply to SheffieldJane]

Sounds similar to me, me and my OH have been distance carers for our parents for more than 10 years . Dad had Alzheimer's and mum refused any help but our for a long time . Mum is now on her own Dad passed away last year as did my mother in law. We have been stretched to the limit really. Still supporting mum but she refuses to change anything .87 years old. 40 miles away from us. We are retired and very tired!

[Yellowbluebell]

I have very mobile joints which have caused problems I the past and like you say just add to the problems. There is another forum member who has hypermobility and I am sure she will be able to help you.YBB

[PMRpro Ambassador]

After this time you really should be trying to reduce your dose - 20mg is seem as an upper starting dose so after 4 months it is time to be on the way down. even if it is just at 1mg at a time. The pred may be contributing to the fatigue, it does for some people.

[Blues1 in reply to PMRpro]

Yes I do think that . Been very achy the last couple of days . That's why I mentioned hypermobility may be adding to my problems. Will try reducing .

[Blearyeyed in reply to Blues1]

Don't try to reduce yet , just in case it is the Hypermobility issue and pain that's stopping you.

You really need a bit more help with that for the other non PMR pain before trying reducing as it is that that may be preventing you feeling alot better and being able to reduce with any success in the first place.

It also may mean that you might be better off eventually on a different combinations of medication .

[Rosina1871 in reply to PMRpro]

I think the pred at 20mg definitely contributed to my fatigue. I’m on 8.5 now and although I do still get fatigued it isn’t as crippling as it was initially

[Blearyeyed in reply to PMRpro]

It won't help , and the dose was high for PMR to start and then maintain , maybe the GP is oddly trying to treat two different syndromes with the same drug and thinks a higher dose will work.

Could be lack of real knowledge of what they are dealing with that's adding to the burden here I think , sounds like a familiar story for me.

If it's hypermobility , it probably won't help with the pain either, but I am adding a longer reply to our new friend below as this needs some answers and putting my " thinking cap" on , now , if I could just get past the brain fog and find it!😋😂😂😂

[Blearyeyed]

What test did they do for your hypermobility , Beighton ?

What is your age , do you know what you scored and which joints you got points?

Suprise , suprise , other forum members will say it's Bleary eyed , or should I be known as , " old Jenny fall apart" by now , I really don't know.

If you can let me know some more details on you hypermobility it might help.

Do you have a Rheumatologist and has your GP confirmed with the same tests wether you " just" have some hypermobile joints or if your have Joint Hypermobility Syndrome ?

Do you have any other non joint related problems like headaches , pain , coordination problems , skin , gastric or gynaecological problems that you had before PMR or steroids?

Yes , I have finally been diagnosed with Degenerative Joint Hypermobility Syndrome / H - EDS ( Type 3) and yes it is the combination of that with either PMR / GCA that will be getting off your steroids far more difficult.

Why, because each syndrome affects the other and triggers more pain. You don't get quite the same physical uplift from Fatigue as you do when on steroids with PMR because a lot of the Fatigue and Pain comes from the Hypermobility issues and steroids don't treat that bit .

You may have had virtually constant low level pain in all your joints and back for years which is not usually from joint inflammation but minor muscle , ligament and nerve damage .

Your muscles and ligaments may already be weak , before the Pred and steroids although helping the PMR joint inflammation can cause more laxity ( stretch ) in the muscles and ligaments for everyone but that bit it will probably be more painful for you because your laxity was already causing you non joint related pain .

Have they offered you any form of nerve or muscle relaxing medication since diagnosis to help treat this additional pain?

If not , you probably need a discussion on that.

And horror of horrors when we are so tired anyway they may need to give you some gentle physiotherapy , like Hydrotherapy to help keep up your muscle strength , and you may also need some occupational help depending on how it is affecting daily jobs or your ability to do everyday activities.

Have you over the years suffered from joints " popping " and sprains , or partial dislocations or small breaks and fractures?

Or , have you found that sprains and other pull injuries have been happening more since your PMR?

These are important questions too .

If we get a more detailed picture together I hope I can help , get you back to the GP to ask the right questions and get the right help to start making things more bearable soon.

Let me know , and hopefully I can give you some more help. Take care x

[Blues1 in reply to Blearyeyed]

Thank you Blearyeyed yes Beighton score, joints thumbs , little finger, knees, bend and touch floor .have always had coordination problems, sensitive skin, bruise easily, tire easily. Had a spell few years ago when I kept falling over which led to shoulder probs/tear. Over years had gynae problems , hysterectomy when I was 44,fibroids, now 62, always had stomach and bowel problems, hay fever and allergies, asthma, shoulder pains frozen shoulder and shoulder tear. Lower back pain for years. Groin and hip pain both stopped on pred. Not referred to rheumatologist. New gp diagnosed my PMR I mentioned hypermobility but he didn't really listen to that. Gave up work 5 years ago couldn't juggle work and parent care so fatigued. No other medication for my condition other than pred. Take co codamol which helps some times not others.

[Blearyeyed in reply to Blues1]

You are 62 and still getting virtually a full Beighton score and have all the other issues and that medical history ( virtually identical to mine ) you are definitely proving the case that you have Joint Hypermobility Syndrome and probably , like me JHS- EDS lll , and like me it has never been diagnosed . Most people over 40 don't have to score on all the tests , most people over 60 they don't often test at all because by then older age is considered to make it impossible for you to get enough points!

EDS stands for Ehlers Danlos Syndrome , a connective tissue disorder which is genetic in origin and can slowly build up various issues through life in all parts of the body because of the way your weakened connective tissue production causes weaker skin, ligaments and muscles , as well as often recurring gastric and gynae issues because of laxity in muscles around the organs and of the tubes connecting them.

I say , JHS-EDS type lll , because new 2017 International Criteria guidelines say that these two conditions are now the same thing , but that doesn't mean you might have another type of EDS , which , like me , you may need additional testing for to see which one so you know how to do the right self care for the future.

This needs a specialist to do , not a GP , although a GP or physio ( even a dentist ) can diagnose the initial condition EDS type 3 ( most either don't know that they can , don't recognise what they need to test for , or don't want to have to ).

You really need more clinical examination of this and confirmation of your physios assessment added into your medical records.

First , GP appointment , ask them if they got a letter from physio telling them about the JHS and ask them to do the Beighton test in clinic at that point and put the JHS in your medical history?

Remind them of your other medical history and explain to them that JHS is now classed the same as Ehlers Danlos Type 3 by the NHS as well as Internationally and request for them to write you an urgent referral to a local Rheumatologist for more assessment who treats and specialises in JHS and Ehlers Danlos patients and for the PMR as both need to be treated together to get relief from both.

In the meantime , ask if your GP can put you on a different pain medication for the non PMR joint and muscle pain issues , such as Garbepentin or Pregbalin , to help that part of your pain so that you will be able to begin tapering your Pred dose a few weeks to a month after finding the right pain killer for you and your other issues?

When that starts to help , doing a jump down in Pred dose from 20- 15 mg may actually be possible which will help with the Fatigue and other symptoms , as the Pred dose at that level after 4 months should have got your PMR inflammation in check to be able to taper , all the higher dose is doing at the moment is adding to your Fatigue and JHS related pain.

Be aware , you will initially feel more drowsy and may have more Fatigue or balance issues as the right pain drug is found . Your body needs to rebalance and get used to the effect of the drugs and you are already tired. You also need to start on a minimum dose and work your way up to reduce the side effects and find what level works for you . Not just an instant big dose , as you may not be tolerant to it and may need some drug changes before the right one sticks.

I note that GP seems to have a more is more approach which is often quite counterproductive.

Most doctors , even Rheumatologists have no proper consistent knowledge of interest in Hypermobility or EDS so it's hard to get the right help , and is probably the reason I have got to 48 and you 65 without ever having it diagnosed or suggested. The only upside of it being that maybe its effect on our joints ( if not our insides ) has been moderate over the years . And we should congratulate ourselves for our lifestyle , because it's they way we looked after our health and bodies , not the Doctors help that means we haven't had much worse problems by now. So well done us!!

You will need to keep up the physio , but with your level of Fatigue you may need to begin Hydrotherapy sessions not just land exercises because it helps build the core muscles with less pain and is highly recommended for all JHS patients , especially if you have had to be inactive. Keeping muscle strength is very important for these conditions and exercise is a huge part of the therapy.

I have now left your brain swimming I know , so I won't give you anymore advice as yet but I will offer to give you all my help , knowledge and support and you can personal message me anytime ( day or night( for any more advice or a bit of emotional support.

If you Follow me , by touching my name or avatar symbol at the top of this reply , go to my profile , press follow , then you will see a messages symbol on the top right side.

Press that , message me and I can give you more help.

Take care , we will both get through this , we have proved what survivors we are for years already and that's before we even knew what was going on !!

Very gentle hugs , Bee xx

[Blues1]

Thank you will keep in touch. Will get gp appointment this week.