Self-care while waiting for diagnosis

[Bunchberry]

Hello everyone,

I recently went to my family doctor about an achey burning in my hips, shoulders and neck that is much worse in the morning, ongoing for about a month now. Getting out of bed and up from chairs is suddenly very difficult (but gets easier by about supper time). My appetite is also down and I’ve lost weight. She sent me off for hip xray and blood tests, which have come back showing high levels of inflammation (high WBC, neutrophils, platelets and C-reactive protein), but normal or negative for rheumatoid factor, antinuclear antibody, and sedimentation rate. I go back to see her in 10 days to review results and see what she says.

But in the meantime of course I couldn’t help Dr Googling, which is how I found out about PMR, and I seem to match almost every symptom. I found your wonderful group and have read all the intro materials. I understand there are other possible diagnoses for my symptoms and blood results, and of course I will wait to see what my doctor says.

But in the meantime, I’m wondering what advice you would have for self-care before treatment begins (if indeed PMR is the diagnosis). Ibuprofen is the only thing that seems to help the stiffness. I take it with food, but I worry about taking it around the clock. I was also reading about low-histamine diets so thought I could give that a try. No harm in it, at least. But the main thing I am wondering is exercise and walking. I usually walk a fair bit and I know I should keep moving to stop my muscles from stiffening even more. But I am wondering if… if indeed I have inflamed joints, could too much walking actually cause harm? (Just city walking, not hiking in the hills).

Thank you,

Jennifer

[PMRpro Ambassador]

Hi and welcome!

It does very much depends WHAT bits are inflamed. I had PMR undiagnosed for 5 years and continued skiing, what I could do in the gym (not much) and living but some things were really difficult. I changed gyms to one with a pool and did aquafit - starting with not a entire session and 2x a week and eventually worked up to every day Mon-Fri (I had an off-peak membership so weekends weren't included). The earlier in the day the class, the better day I had. But I had to be careful about fatigue - it could hit like a 10 ton truck and I was floored, had to sit down and couldn't do a think until I'd rested for some time. So you try, and you see what YOU can manage. And preferably not too much at a time. Your muscles can't tell you they've had enough at the time - you will find out next day or a few days later and you will wonder why you feel so awful.

[piglette]

The metra for PMR is rest, rest, rest. It can be life changing. The only thing that really helps is steroids. If ibuprofen is helping you it may be something else or you have two problems. Hope you can get it sorted out soon. In my case I just got worse and worse as they diagnosed a long term virus. I was then given steroids and I felt alive again.

[Koalajane]

be careful if taking ibuprofen.

My son recently was rushed to hospital after vomiting blood and clots. He had to have 2 bags of blood transfused and an endoscopy showed scarring on the lining of his stomach. He was so weak and his lips went blue and on arrival by ambulance at the hospital was rushed to Resus.

I don’t want to frighten you but he had taken ibuprofen as directed with food and this happened. It has made me very wary of ibuprofen

[Bunchberry in reply to Koalajane]

Gosh, how alarming. I will be careful.

[Yellow-dog]

hi Bunchberry

I think the most useful thing I can offer is to tell you not to let your doctor prevaricate. Mine did, for nine months, by which time I could barely move. I had been tested for all sorts of things, because although my esr was high , my cpr was not so they thought it could not be pmr. In the end I begged them to treat me as if I had pmr ( like you I had googled) and within hours of taking steroids the pain had almost gone.

By that time my general health had deteriorated so much . If you do have pmr it won’t go away on its own .

In the meantime I found swimming was helpful, it was the only time I was pain free. That and short walks, as you do have to keep some movement going .But as others have said beware fatigue! You cannot push through it when it hits.

I hope you get sorted soon,

[Rozzelf in reply to Yellow-dog]

We sound very similiar, I have had so many blood tests, 2 mri’s, X-rays, EMG. They initially said my inflammatory markers were fine, but it didn’t feel that way. This started last May. In February I asked for steroids and they said no, my inflammatory markers were a lot higher. This month I asked again and they said not til I have seen a rheumatologist when it’s a 39 week wait. I put in a letter of complaint and did another econsult and started steroids yesterday at 15mg. I wouldn’t say all the pain has gone, but it’s a lot better. I think I am dealing with the impact of being in pain for so long as well now though, there is a lot of muscle weakness I think too. Did all your pain go straight away?

[Yellow-dog in reply to Rozzelf]

No, the pain didn’t all go straight away. Most of the pain was gone very soon after starting steroids ( I started on 20 mg) but I was left with the aftermath of having been in pain and pretty much immobile for all those months. It took time to build up strength and fitness. I remember my first short walks to the park and feeling dismayed that I could go no further! But it felt good to know that i was gradually improving and things did get better in time. Good luck, and I hope you feel better very soon.

[Rozzelf in reply to Yellow-dog]

Thank you for replying. Same here, I don’t know how I have got through it in all honesty. I have read some say their pain went straight away, but as you say the impact for those given a prolonged diagnosis will be different I think. I hope you are proud of yourself, keep strong and may each day be better than the one before.

[PMRpro Ambassador in reply to Rozzelf]

Not necessarily - I had a 70% improvement in stiffness and pain in under 6 hours with 15mg pred. The rest worse off slowly over the following 3 or 4 months, And that was after 5 years of symptoms and no diagnosis.

[Siena62]

I agree with the advice not to let the doctor prevaricate. It took four months for me to be diagnosed by which time I was in a dreadful state. I could barely walk and nearly all movement caused pain or soreness. I actually told my husband that I couldn’t go on. I remember describing to the Rheumatologist in graphic detail what a struggle it was getting through the day and emphasising that each extra day waiting for something to happen was very difficult to bear. The Rheumatologist who diagnosed me actually said ‘I didn’t think you’d be so unwell’ and that plus not having the scan results and making me wait for two days until she could look at them and rule out cancer soured the relationship from the start. She is also a Methotrexate fan and has pushed me to go onto it from three months in. I’m seeing another Rheumatologist now.

Sorry, rant over. But don’t let them mess you around. If you have PMR you’ll just get worse and worse.

[PMRpro Ambassador in reply to Siena62]

Many rheumies simply don't get how unwell PMR can make us. They don't often see a patient wheeled in in a chair - mostly such patients had been started on pred but the rheumies think it is GPs getting above themselves despite the fact it was THEY who dismissed PMR as something to be dealt with in primary care previously. Now they are realising they underestimated how difficult it can be to diagnose and manage and that it ISN'T a benign self-limiting disorder. But the worldwide shortage of specialists means long waits for patients who simply can't function. And when you are over 70 - the average age of diagnosis - you run the risk of being dismissed with "normal aging".

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

dismissed with "normal aging".

Or younger - 63/64 in my case!

[PMRpro Ambassador in reply to DorsetLady]

Can beat that - early 50s, at the gym most days, suddenly couldn't do things.

[sidra1968]

Sounds similar to me. My advice is to politely demand a trial 2 to 3 weeks of Pred. I had spent a lot of time and money trying to figure out what was wrong. After taking 2 Medrol packs at different times (5 days of steroids) from Urgent Care, and feeling better by the next day, I googled "what disease does steroids make feel better overnight" and this site popped up.

That is when I told my GP I wanted the Sed Rate test (was normal high)..but I made sure he saw how miserable I was and let me trial it - on my demand and near tears pretty much. He did rule out cancer with a chest x-ray and all other possibilities, too. So he was thorough, I give him that.

Seems we must be polite but adamant with these docs, it's not their life being ruined..you leave the office and they are onto the next guy and kind of forget all about it. Keep us posted. This site is godsend.

[Bunchberry]

Thanks, everyone, I appreciate very much your comments.

[AtopicGuy]

Any routine infection should have cleared in the month since your symptoms appeared. If no alternative cause can be found for the inflammation, then autoimmunity becomes a possibility. Whether you respond strongly and quickly to a trial on steroids is the next question. Exercise gently to give the inflamed tissues a chance to heal; and the usual advice on healthy living applies, of course. Hopefully, follow-up blood tests will show you're on the right track.