Pain/Fatigue in Vasculitis (even when other symptoms are under control)

[PCAD]

Firstly, can I say that this forum has been invaluable over the last 9 months in making progress with my own health issues. I have found so many threads really useful.

I know from searches of the forum that pain/fatigue in Vasculitis come up at regular intervals on the forum but I would be very interested in hearing stories from people with similar issues and how they have managed to cope with the pain/fatigue (both when other symptoms are also evident and when the other symptoms are under control).

From my own perspective it has taken me over 3 years to get all the other Vasculitis symptoms finally under control to just be left with pain/fatigue (albeit at levels which are currently having huge impact on quality of life). I feel very lucky given it took so long to get close to a diagnosis and then treatment that worked that I have no long term damage to the Vasculitis impacted areas. My breakthrough finally came when I was switched to Methotrexate injections from the tablets form (which it now appears I was not absorbing properly). Within weeks the improvement in symptoms was remarkable. I was also greatly helped by finally getting to see a Vasculitis specialist.

My Vasculitis consultant was explaining this week that for reasons unknown they do see a lot of these kinds of pain reports in people with Vasculitis, even when the other symptoms are under control. The best theory he had is that the pain mechanism gets rebooted into a hyper sensitive state as part of the inflammatory process thus causing the increased sensitivity to pain. I think I have read something similar on this forum as well as comments around possible nerve damage caused by the Vasculitis.

My pain comes from 2 distinct situations:

1. Pain from the site of old operations (e.g. appendix operation site but internal - scar tissue perhaps) or old sporting injuries.

2. Pain from pressure. For example:

- ankles when standing

- anywhere I lay on for too long at night - amitriptyline helps get me through the night. As does a form mattress and pillow.

I only use codeine and paracetamol for pain relief.

Fatigue is a virtual constant, but I'm getting much better at pacing myself now than I used too (John's reserve battery analogy from a few years ago is a very good description).

Anyway, I would be really interested in other people's stories around pain and fatigue and any guidance to improve things. Has anyone found that the pain/fatigue eventually subsides when other symptoms under control?

[Hidden]

Hi PCAD. I have struggled with fatigue and pain too. Presently I have joint pain, in particular in my right elbow (I'm right handed so it could be a bit of tendonitis) but my ankles always take a while to adjust in the morning. When I first get up they hurt to walk on but gradually it lessens throughout the day. I have introduced a better diet, gone gluten free and lost weight which I believe has helped me combat some of my sluggishness. I try to walk at least a couple of miles a day which also helps with preventing osteoporosis. I was interested to read you weren't absorbing you methotrexate and switched to injections...I thought that was just an option for those who suffered nausea.

I agree, this forum is a great way to learn from others. Good question; I'll be following with interest.

[PCAD in reply to Hidden]

Hi, sorry for the delay in responding. The methotrexate thing was interesting. I had been on tablets (15mg) for 8 months without nausea and sickness. This had allowed me to slowly taper my pred down to 5mg (but not below despite a few efforts) and showed some improvement in symptoms. However in Jan nausea started and gradually got worse. As the nausea got worse so did the symptoms (rapidly). So, the initial discussion with Rheumy nurse was around the nausea, but very quickly moved onto the increased symptoms and the conclusion I was not absorbing the tablets fully, but of course they have no way of knowing what I was absorbing! It was then the nurse said that it is so much easier to know what is being absorbed with the injections as its a very pure method of delivery of the drug.

They actually put me on 15mg of the injection, which was classed as a slightly higher dose (15mg tablets = 12.5mg injections, if the tablets are fully absorbed) due to the symptoms flare.

As per my above post, this did a great job in calming majority of symptoms (except for pain and fatigue).

Just to link in with another post on this forum, I was told by my vasculitis consultants last week not to even think about having a discussion about reducing the dose of methotrexate for a considerable period of times.

[PMRpro]

I can only speak from my particular form of vasculitis, GCA, and after the best part of 10 years of the fatigue it has improved dramatically in the last year or two and that has been after pain from other sources has been sorted out and now is kept reasonably at bay using Bowen therapy which I do find very relaxing and uplifting at the same time.

Something that really rather surprised me this summer was how well I felt during a 2 week tour in China. Had I realised that the daily programme had no real options in it I would probably not have booked it but as it was I had to get on with it - and feel far more fatigued now we are back home and I'm not spending all day on my feet between short bus trips. There is, after all, a limit to how much wandering around you can do every day without a very fixed aim: it is boring eventually and takes a lot of time...

Many people find this a very powerful statement about what we face on a daily basis:

butyoudontlooksick.com/arti...

[BronteM]

On the whole I find the pain is now relatively manageable...I have Takayasu's or large vessel Vasculitis so the main pain comes from claudication, or lack of oxygen in my muscles. So picking apples can be very painful, but I know the pain is temporary and will go once I stop. To an extent you can say that I can choose how long the pain goes on, and how to stop it. I still have at least one 'very uncomfortable' session each night though, and those are tiring as well as boring and I haven't found a way of stopping them. This is since diagnosis and treatment-it was another story before that.

The fatigue is another matter; it's less, but something that I have to manage continuously. The spoon theory idea helps me most, and is easiest to explain to friends and family. At my last clinic I was told that the doctors are getting better at controlling the pain and inflammation, but have not yet found a way of lessening the fatigue, though there is research going on. So we have to carry on managing with any technique that we can find for ourselves.

[michichgo]

MPA, 2 years with kidney involvement.

There seem to remain so many unknown, seemingly undiagnosed nuances of this disease. Pain and fatigue must be two of the most prevalent, not-disease-specific, issues mentioned in forum topics.

I developed avascular necrosis (AVN, aka osteonecrosis) and have had both hips replaced. With respect to pain from the waist down, I cannot be certain of the source: MPA or AVN.

As to the topic of fatigue, oy! It is present daily, some days worse than others. My doctors-and I have many-don't seem to recognize fatigue as a side effect of vasculitis. Pity, as it remains a significant hurdle to my recovery.

I feel as though I've aged, physically, decades in the past two years. I am returning to a normal life, although I don't particularly care for this new normal.

As I am from Chicago I must close with an obligatory GO CUBS!

Cheers.

[PCAD in reply to michichgo]

Greetings from across the Atlantic.

You raise a very interesting points around the recognition of pain and fatigue as being aspects of vasculitis and the difficulty some medical experts have in recognising this. Luckily my GP and vasculitis consultant are certainly on board (but of course can offer no quick solution) but my Rheumy, well that's another (long) story. As my bloods have always been negative (when tested) he is a non believer and despite the evidence tries to come up with many a theory to explain the long list of symptoms! Luckily, the methotrexate injections now have the majority of symptoms under control (except for pain/fatigue) and I think myself very lucky to have reached this point without permanent damage to anything important.

[Hidden]

Hi. I currently have HSP, now for the second time after first having it about 10 years ago it has returned.

First time round I had knee, shoulder and neck pain along with purpura on the lower legs. I too was fortunate as it took 14 months for diagnosis but there were no long term complications with organs etc. I was sick for about 2 years and had the pain and fatigue throughout that time. I was on prednisolone, painkillers and then finally dapsone which seemed to do the trick and kick the problem into touch. The fatigue and pain eventually subsided after a further few months but the knee pain kept coming back every now and then and I even occasionally dislodge my miniscus (maybe this is unrelated).

The illness came back for me around a month ago, some 8 years after I got the all clear. The first thing that happened was knee pain, and fatigue, and sore neck for a week or 2 before the purpura broke out, this time much more extensively and covered me up to my waist and forearms. I now cannot stand still for more than a few minutes without pain, and have general fatigue. Back on prednislone which has made me quite hyper and sleepless. Compression stockings really help.

In conclusion, for me the pain and the fatigue came before and after the visible signs (i.e. purpura) and there was a general feeling of fatigue for much longer but that did eventually subside.

Hope this helps, and good luck with it.