How can I handle the fatigue and the stress(I get easy nervous and tensed)

Bones, joints and muscles
1

My name is Jetty and I live on the island of Curacao(in the Caribbean).I was diagnosed in januari

2010 with PMR and started with 15mg prednison.Within 2 days my pains(neck,shoulder,hip) were

practically gone. I am seeing a internal medical specialist(we don't have a reumatologist). I tried 3

times to reduce the prednison and once at 0 the pain came back.The last time was in 2012 where I went to see a reumatologist in the Netherlands,who said I had to do it even slower(I was at 7mg

and his advice was down with 1 mg every 6wks). In Januari 2013 I was at 0mg and in march I

had

the 4th relapse and was put on 5mg (pain was not severe) and in May at 10mg, as the pain

increased.In June I had pain in my jaw(left),blurred vision and temporal headache.I was put on

40 mg, and treated for GCA.I also saw the eye specialist and my vision recovered after some

months.Every 2 weeks the prednison was reduced with 10mg untill I reached 20mg..From there I went to 15mg and then 12.5mg ,10mg, 9mg and 8mg(every 2wks). It was then september/

october 2013 and I got again headache but now in front.I seemed that I had Highblood pressure,for which I am treated up to now. I also begon to feel very tired and mid november I stayed for

almost 2weeks in bed.Could not work anymore(I am a physical therapist). In december I felt

better and in januari 2014 I tried to start working for a few hours a day,but by the end of januari I

had to stay home again feeling very tired and not able to handle stress. I am now at 6mg pred. ,

since januari 6th and have only a little pain in the right shoulder when I sleep on it. Since last

week I went back to the gym,but very low key. Can anybody give me some advice on what I do

good or wrong. I am following this forum now since a month, but I was too shy to put my story

eventhough I see how it works for a lot of people!!

Thanks!!

2

Hi and welcome!

Really you have been trying to reduce too fast. Unfortunately when you try to force the reduction and have a flare the next reduction tends to be more difficult. And treating GCA takes years not months to get to where you no longer need pred.

Follow this link to find another post on this site with links to more information

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

and in it there is a link to a paper about diagnosing and treating PMR and GCA by a specialist in Bristol, England which is aimed at non-rheumatologists caring for patients with PMR/GCA. They take about two and half years to reduce from a GCA starting dose of 60mg to zero - and it takes longer if there are any problems. You can download/print it and discuss the reduction scheme with your doctor (it's in table 5 on page 6 with the scheme for the 104 weeks mentioned in the final line on page 4).

If you feel ill it may be that the inflammation is still present and you need to go back to a higher dose until you feel better and then start reducing slowly in the way Professor Kirwan suggests in the paper. When you have been taking pred for any length of time (as you have) the adrenal glands may not work properly and you must reduce slowly to avoid problems associated with that - and you saying you feel very tired and unable to cope with stress would fit with that.

Take the information you can find in those links I have given you to your doctor and discuss it with him. But I think you need a higher dose for a while and then reduce much more slowly.

Let us know how you get on.

3

Hello Jetty

I live in the U.S.A. but originally from South Africa, my age is 56. I'm very active and love my tennis, singles and doubles in a club I belong to and for fun (although I am very competitive).

My grandson was born 10 October 2011 and I was delighted, I could help with the nightshift for my daughter and her husband, sleep on the floor if need be, run with a one year old, grab, swish him in the air, play, swim and have fun with him! BUT he turned ONLY 3 MONTHS OLD O on one winters morning and my entire life changed, I could not move, everything ached, NEEDLESS to tell YOU what PMR feels like, you know exactly.

THIS TYPE OF AGONY, THIS PAIN and devastation was too much for me. I had a terrible childhood (wrote a memoir about it because I was kidnapped but healed and live for NOW and playing catch up on a

"lost childhood"

EileenH gave you the best advise medically! MY story was a little more difficult, because I am allergic to

Pred or any Steroid as for that. Then I was given antiInflammatory tablets and pain killers. My life was

one pain mess and I even tried to play tennis through this! I am tough, but then I added angry frustration,

sad and miserable.

It is a long road, a tough road and the medications are severe to make life bearable BUT I want to give you

HOPE:

PMR DOES BURN OUT! 2 YEARS AND TWO WEEKS later one morning, I woke up and there was no

pain, no stiffness. It 4 months and 1 day to the date without it. I still cry when I think about it. I WISH

somebody would tell me if it stays away forever, I pray it does! I wake up in the nights, lift my arms and

move my body just to still feel I am pain free.

Stay in hope and faith Jetty and take very good care of yourself. If you want to share on here with me

about anything and use me as a soundboard - please do - I never had anybody I could tell about this

PMR stealing my joy! Just the opposite. Take care

Judy

4

Dear Jetty, and all fellow sufferers who read this!

Thank you for sharing your story. You truly have been through a lot and I feel for you, Jetty.

I have been suffering under what I believe is fibro myalgia but was diagnosed as poly myalgia.

Like you I have been to hell and backwards and I am grateful for every day (especially night) I managed to get through.

I am a cancer surviver, had breast cancer twice but refused chemo and radiation because I always believed in natural healing methods and I am opposed to todays modern medicine.

After having had cancer for several years I decided to have a double mastectomy, because I could not kill the cancer, only hold it in bay and I was sick of living my life so self-indulgent with all the attention on myself. I had changed my diet, life style and tried alternative treatments on myself.

To the surprise of my oncologist the 'invasive' cancer had not spread (invaded) and I got the 'all clear'.

After two years rest from illness I woke up one morning with the most excruciating pain I have ever experienced in my life. I was unable to move or to leave my bed without screaming in pain. I thought that this was the end of my road and I would now end up in a nursing home. I had never heard before of such desease as poly-or fibro myalgia. Well you know what I am talking about.

The Doctor told me that Prednesolone was the only medicine that would take the pain away effectively and in my desperation I followed his advise, as I wanted to live a normal life. After trying 5 mg to see if there was a reaction, which amazingly eased my pain, I was diagnosed with poly-myalgia which was confirmed by the reumathologist.

I started with 25mg and worked my way down (and back up) and down again and today after 14 month I am on 2mg. Prednesolone has made me very ill and effected almost every organ of my body, I even lost half of my eye sight. During the 14 month I put 25KG weight on and I also had to wear morphine patches as prednesolone alone did not deal with my pain effectively enough to make it through the day.

I started with 5mg morphine patches and wear now after 14 month 20mg patches, as the body seems to get tolerant to them. Any other pain killers I tried have too many side effects, as I am also suffer under celiac desease and have damaged small intestines. The patches seem to have no side effects at all, neither do they make me drowsy, but they make the pain bearable and enable me to sleep. Sadly they also might cause addiction over time.

I lost 5KG weight since being below 5mg prednesolone. My full moon face is almost back to normal, and most side effects have almost disappeared.

Now I am searching frantically for some alternative methods to concur this terrible painful desease as morphine patches are no long-term solution for me.

I have found a few things that have made a huge difference to the stiff joints, ear pain and all-over wellbeing including positive attitude. I also found an natural alternative for prednesolone which I am testing on myself at the moment. If you are interested I will keep you posted.

Also I am using my days studying the desease in depth and hope to find some answers, as modern medicine does not seem to have any.

Jetty, I would like to hear your background story and any one elses who is willing to share it with me.

As Poly-and Fibro-Myalgia is a relative new illness, only officially recognized since the 70th, one should be able to trace back the 'origins' of it, otherwise we will always ever only treat the symptoms and make the big pharmaceutical companies rich, as it is happening with cancer and the common cold.

I am glad to hear that Prednesolone has helped you and many of you here in this forum to get their life back. Sadly it has not helped me, but has added new health problems to the already existing ones and I am sure it would have killed me if I would have continued taking it.

All the best for you, my dear Jetty and fellow battlers.

Love from Australia/Tasmania

I

5

"As Poly-and Fibro-Myalgia is a relative new illness, only officially recognized since the 70th..."

I don't know what makes you think that:

"PMR was first described by Bruce in 1888 [1] under the name senile rheumatic gout. Its present name, PMR, was coined only in 1957 by Barber"

It has been recognised and described for 125 years but until the early 1950s there was no way of dealing with it successfully, many patients remained invalids for the rest of their lives if the underlying probably autoimmune disorder didn't go into remission. When corticosteroids were developed in the 1940s they gave patients who needed wheelchairs high doses to see what happened - and they got up and walked in some cases. These patients very likely had PMR or something very similar.

Your description of the start does not match fibromyalgia which has multiple but discrete painful points, PMR typically appears overnight as you describe although sometimes it creeps up slowly before suddenly worsening. The treatments for fibromyalgia do not have any effect in PMR, nor do the drugs for arthritis - although sometimes PMR is diagnosed in patients who actually have late-onset rheumatoid arthritis so those medications may then have some effect.

The cause of the pain in PMR is inflammation that leads to swelling in the muscles. Reducing the inflammation indirectly deals with the pain. If a patient does not tolerate prednisolone there are already some other drugs that seem to work quite well to reduce the amount of pred required. One is leflunomide which has been used in a trial in England and induced remission in 22 out of 23 patients who had not been able to take pred - not conclusive but promising.

A diet with a lot of antiinflammatory substances seems to help many patients and that sort of diet is easily found via the internet. A few have found a very strictly vegan diet also helps. I managed for 5 years using acquaerobics to get mobile and Pilates, Iyengar yoga and Bowen technique - I was not diagnosed, it wasn't out of choice.

The main risk with not taking some form of medication to control the inflammation is that a long term state of inflammation in the body can lead to other illnesses including cardiovascular problems (the heart and blood vessels) and some cancers.

I don't know what your "natural alternative" to prednisolone is - but if it is Beline capsules they have been shown to contain high levels of corticosteroids and a few other risky substances. Whatever they are - they are NOT natural and are almost certainly not safe to use even if they are claimed to be so and give pain relief.

6

Jetty sent this as a private message but really wanted it "public" - so here it is together with my reply:

I also thought, after reading all the info on this forum,that I was reducing the pred.

too fast.I will surely follow the link to get more info. At this moment my biggest

biggest problem is the fatigue(hard to get out of bed) and the stress handling.

I am now at 6mg pred.for 5 weeks. and have only a little pain in miy shoulder

when lying in bed on it. During the day I have no pain at all. Do I still have to go

to a higher dose as you mentioned because of the GCA(was a suspicion)),or

can I stay on the 6mg. I am taking now but then for a longer time.

I also read about your personal experience where you mentioned that you are

on 5mg for a longer time and that the advice is for some 6 months and then

going down with 1/2 mg every 6 weeks (one day new and 6 days old etc.).

I hope I understood this well as English is not my native language.

I am very thankfull for your help and I will keep you updated.Tomorrow I will see my doctor again and will discuss this with him.

Regards, Jetty

And my reply:

Your English is very good - do you speak Dutch? I missed a trip to Curacao when we were unable to go to a congress many years ago - everyone told me what a good meeting it was and how lovely your island is.

If 6mg is dealing with the pain then it is probably enough - but you need to be watchful for the symptoms of GCA.

Ask your doctor what he thinks about checking your adrenal function - or maybe going back to 7 or 8mg to see if you feel less tired and able to deal with stress better. The concern about rushing the reduction at this stage is that a patient's adrenal function is slow to catch up with the lower dose. You are now at a quite low dose and the risks of side-effects are far less so there is no real hurry.

Good luck

7

Dear Elisa,

Your story shows that you really have been through a lot. I am now 61 years old and up to 2010 very healthy and active. Overnight I got a terrible flu with body aches. Since then the pain (shoulder,neck and hipregion) stayed.

As I mentioned prednison works well for me, but like Eileen explained, the reduction scheme is too fast.

For me it also helps to do excercises, but well dosed.

Elisa I hope that things will work out well for you!!

Regards, Jetty

8

Please have your thyroid checked since you mentioned that you were really tired.

9

PMR is almost certainly an autoimmune disorder - "PMR" is the name for this particular set of symptoms rather than any others. Fatigue is part of almost all autoimmune illnesses so it is also a part of PMR.

Thyroid problems can also be due to an autoimmune disorder but thyroid disease is not usually found in PMR. One of the primary things which should be checked in making the diagnosis of PMR is thyroid function - PMR is called a "diagnosis of exclusion" - you have ruled out all the other possible options first, including cancer and thyroid problems. Since hypothyroidism is relatively easy to treat and would avoid the need to use pred it is difficult to imagine that a GP wouldn't include thyroid function when doing the blood tests.

10

My thyroid was checked different times and found normal.

Joey thank you for your advice and Eileen thank you for your comment.