PMR and PVD now - we're gonna need a bigger pill-box

Soosie56 , Celtic , @PMRPro - thank you, you each win a coconut from my previous post on calf pain . I now have a diagnosis of Peripheral Vascular Disease as well as PMR and an underactive thyroid and I've not reached 60 yet. Seems to be conflicting requirements regarding pain and what to eat to manage each of these, luckily I do like a good challenge. I'm going to try a dietitian to help. On the plus side, the new diagnosis has taken my mind of the PMR. How many more hints do I need to give up the stressful job ...?!

[PMRpro Ambassador]

Well, that's nice! It never rains but it pours I suppose!

What are they doing about the PVD?

Do tell me more about the "conflicting advice on what to eat"...

[Hidden in reply to PMRpro]

Hi there. The 'food clash', @PMRpro, is with regard to tablets being take for the three conditions. I read there are foods that are generally good but actually diminish the effect of the different medications. For PMR I've upped the dairy for calcium, for PVD my cholesterol needs to come down so low-fat food's recommended. Low-fat food can contain sugar which will increase the risk of diabetes because of the Pred. I can't take the Calcichew until lunch time (due to the morning Thyroxine) and the absorption of that can be affected by spinach etc. - same again with the evening dose of Calcichew. I need the iron!

Irrespective of any potential reduction in cholesterol I hear I must now take statins and blood thinners for life, once I go and get the prescription. With PMR I should take things easy and not overdo exercise, with PVD I need to push and walk for miles.

Phew, I get exhausted thinking about it all :-). Dietitian Therapist here I come.

[PMRpro Ambassador in reply to Hidden]

Yes - see what you mean! Though the walking for PVD and PMR aren't really mutually exclusive - it's aiming for the burn in the gym (or stair climbing or whatever) that is the no-no in PMR and you can do a lot more when you rest every so often which is the idea of the PVD exercise - walking through the pain and then resting. How long does it take for the claudication to pinch?

[Hidden in reply to PMRpro]

Initially it started to pinch at around 120/150 reasonably paced steps and I had to stop. Now, if I just keep going like Robocop - steady and evenly paced - it's maybe into the 200s before it reaches its peak. It doesn't get toooo bad (or I'm getting used to it) so I just keep going and not stop until I've finished my 35 minute session, around 3 miles plus. Seems to be improving with practice. Thinking of going for more miles at some point involving stops. So I shouldn't head for hills, PMR-wise? Started Pilates. Thinking also I might do a careful Zumba attempt - crazy??

[PMRpro Ambassador in reply to Hidden]

No - none of it is crazy - just start with each option small and increase it slowly and see how you get on. No reason not to do hills if you are oK with them - I went out for a walk yesterday and walked up the hill because I hadn't got OH with me! My legs are still tired today - but it was a new experience! But 3 miles in 35min is pretty good!

[Hidden in reply to PMRpro]

Great, thanks for the encouragement PMRpro, I'll work up to it all gradually and stop when something starts singing. I usually walk around 3 miles an hour, seriously. This is one of the challenges!

[Hidden in reply to Hidden]

What nonsense I typed! New Fitbit and glass of wine there! Just under 2 miles in those 35 mins!! 🙄

[PMRpro Ambassador in reply to Hidden]

Were you looking a km then?

Even so - for a PVD/PMR patient that isn't bad.

[Celtic PMRGCAuk volunteer]

Soosie56, I'm so sorry to hear that, as if PMR wasn't enough to cope with!

As far as the PVD is concerned, have you tried posting in the Vasculitis Community? You might find it helpful to talk to others similarly diagnosed.

Although there is no diet that will cure the pain of PMR, it can help if we resort to plenty of known anti-inflammatory-type foods (oily fish and turmeric are excellent) and avoid those known to be pro-inflammatory.

Stressful jobs don't make comfortable bedfellows with PMR - I consider myself lucky(!) in that direction as I had already retired when PMR/GCA arrived on the scene. Good luck with whatever decision you make.

[Hidden in reply to Celtic]

Thanks, Celtic. Now you've just added to the mix - not become aware of the pro-inflammatories ... yet!

[HeronNS in reply to Hidden]

Disappointing that as long ago as 2002 there was a study done on the effects of diet on inflammatory diseases, and yet doctors seem uninterested in helping us with this.

ncbi.nlm.nih.gov/pubmed/119...

[Celtic PMRGCAuk volunteer in reply to Hidden]

BuzzyB, when you start researching inflammatory foods, you will be surprised how many there are. Certain oils for instance, red meats, sugar, alcohol, etc. For all types of inflammatory conditions, It is important to reduce the intake of those foods whilst increasing those known to be anti-inflammatory. Enjoy the challenge!

[PMRpro Ambassador in reply to Hidden]

You have - you keep sugar out not only because of the diabetes problem but also because it and white carbs are pro-inflammatory...

[aladymo in reply to Hidden]

Hi I don’t know if you’re still around this site. ( hopefully cured). I have PMR and pvd as well. I can’t walk more than 50 steps before pain starts. ( how do you continue with pain - it’s excruciating ).

[Hidden in reply to aladymo]

Hello aladymo,

I'm still here and keep meaning to post an update but not wanting to tempt fate so have delayed - I'm PMR and Prednisolone free as of a couple of months ago. So far so good!

Still soldiering on with the PVD, on statins and blood thinners. Thyroxine too. Had the PVD diagnosis and a suggestion from the consultant at that point that he'd call me back in for a follow-up. Never to be heard from again. I've a follow up booked shortly with the GP Practice Nurse since they wrote and offered.

I remember walking feeling excruciating after a very short distance and having to stop for about 5 mins until it subsided. I assume the meds are helping and also me building up to fast walks of about 30-50 mins a day whenever I can. Today was a bit sore but I was in flat shoes which may not help. I average in overall total about 23 miles a week in Fitbit steps. I've become used to the pain and just keep going.

I've no idea if it made any difference to anything but after the PMR and PVD diagnoses, as well as the increased walking I've eliminated processed foods and a lot of dairy, I was already pescatarian. I still do Pilates. I really don't recognise the New Improved Me so at least I've got that to thank these conditions for!

Are you on medication? Have you been advised to walk and walk as I was?

[aladymo in reply to Hidden]

Thanks so much for answering me. I am a real newbie. Diagnosed in March. Was put on 10mg Pred. It took away about 70% of pain. Now I have the pain in my shin and calf. Going to the dr. Next week. No definite diagnosis yet, but my rheumatologist wants me to get it checked. Trying to walk , but it’ kills. ( I stop and start ). I used to walk 10,000 steps a day ( Fitbit). I don’t recognize this “new”me either :(( how long did you have PMR for. So glad to hear you’re ok !

[PMRpro Ambassador in reply to Celtic]

I doubt there are that many with PVD in the Vasculitis community except a few possibly with it secondary to their vasculitis. They are two different things - PVD (peripheral vascular disease) is also sometimes known as PAOD, peripheral arterial occlusive disease - furred up pipes really. Thickening of the vessel walls for various reasons but that isn't simply due to inflammation - so pred doesn't help. It usually belongs in the hands of vascular surgeons as opposed to rheumatologists who specialise in vasculitis. Very confusing...

[Deb61]

Hi Soosie56

I have GCA and have had for a year. I am 61 and have been off work since diagnosis. I had a very stressful job as well. I no longer can have any stress as it really affects my symptoms. I can barely tolerate good stress - a 3 year old grandchilds Bday party lol but true! I think for me I would rather try to survive the fun stress that my job!!!!

[Hidden in reply to Deb61]

Thanks, Deb61. Sorry to hear that ... but I like your style

[Hidden]

BuzzyB here BTW, not Soosie56! Thanks folks as always for your messages.