daft question, but I'm puzzled!

[Tiggertheterrier]

while I am waiting for my next CT scan next Thursday, and the latest batch of blood test results, can anybody else who has the same 'badly controlled asthma with bronchiectasis on top' tell me if painful and weak thighs and upper arms are part of the symptom bundle, or am I on my own! I haven't changed meds yet as surgery still haven't had thr letter from the hospital. Interestingly if I am on a course of oral Pred, the pains in both the legs and arms will go away. I have got widespread osteoarthritis and one of thr latest blood tests was to check for any autoimmune activity. My current levels of fatigue have brought me to a standstill. Thank you in advance.

[Biker88]

can’t help with the aches and pains, but badly controlled asthma can be an indication of allergic bronco pulmonary aspergillosis, have you been tested for fungal conditions. It is in the rare disease category and can be had to diagnose

[Tiggertheterrier in reply to Biker88]

hiBiker88,

New consultant is checking for that. Have had blood tests and a sputum sample went in fir testing as well. She's much more thorough than my previous consultant!! For which I am very grateful as I think he missed an awful lot.

[swanseajack]

It could be me writing this as I have exactly the same conditions and the same painful thighs and upper arms. I’ve never mentioned this to any medic but would be interested to know what your consultant says if you bring it up with him/her. I’ve assumed it’s part of my arthritis as I have the same pain across my shoulders and neck which are arthritic. Whilst prednisone for asthma does give temporary relief to these pains they return as soon as the course is finished. Not much use to you I know except to know that you’re not on your own. Take care x

[Tiggertheterrier in reply to swanseajack]

Aha! I'm not alone then! Thank you for your reply. My old consultant just wasn't interested in any symptom not directly to do with my lungs, and wasn't a good listener either, I used to dread my appointments! I will let you know if new lady does any successful joining up of the dots.

[peege in reply to Tiggertheterrier]

Have you two tried very very gentle stretching? It helps me although I'm sure my aches & pains aren't inhaler related but down to statins which I've been on since early 50s, under 9 stone & very fit (those were the days). High cholesterol & stroke run in my family so the lesser evil I believe.

[Tiggertheterrier in reply to peege]

Hi peege, I do gentle stretches every morning. I have a history of fibromyalgia, but this is defo not the same pain! It has increased in direct proportion to the shortness of breath and coughing. I walk my dog 5 times a day, 7 days a week, in total around 4 to 5 miles a day, albeit these days VERY SLOWLY AND NO HILLS OF ANY KIND. My weight has plummeted down to 7 stone 2 pounds, even with a normal diet weight won't go back on again. *sigh* just hoping consultant has a few answers after thr scan results reaches her office. X

[peege in reply to Tiggertheterrier]

Goodness, very worrying. It's good (well not good but I hope you know what I mean) that you can distinguish between what you're feeling and that of fibromyalgia. They can see so much from CT scan.

[Confused01 in reply to Tiggertheterrier]

Generally I find Consultants will only discuss within their field and tbh because they don’t know beyond their specialist subject…many do though. I would ask for a separate referral, Rheumatologist? NHS Consultants used to refer via in but now patient goes via GP. That’s a money thing as each referral via GP generates payment.

[Tykelady in reply to Confused01]

To Confused01-I have found as my illness has progressed that the hospital results are not always shared with the GP even though I have been discharged into their care. I notice that Tigger seems to have had the same thing happen

[Confused01 in reply to Tykelady]

There seems to be frequent issues with hospitals not sending on results. Many times I have chased up myself. Also some mri and ct reports aren’t getting done..recent one of mine is sitting on nhs hospital system unreported (a Consultant for something else noticed on the screen and told me). That’s just shoddy tbh and could be dangerous too!

[Tiggertheterrier in reply to Confused01]

I have a feeling I may end up on rheumatology waiting list! You are right, they only seem to deal with the bit of your body that they are there to sort out. Frustrating as a patient though, while they play 'pass the parcel' with you.

[KaraKim in reply to Tiggertheterrier]

CT diagnosed my COPD/emphysema & I'm waiting for rheumatology appt as like you I'm in much physical pain, CT 4 years ago showed "degeneration of the lumber spine" but forms of Vasculitis and RA can also affect eye sight as well as movement so I need a consultant to diagnose what it is - there are several forms of RA with something else and only a doctor can evaluate. The past 2 Christmases I've had measles like rashes on my lower body - went after a week. Good luck and do get yourself on the waiting list.

[Ergendl]

Our muscles need oxygen to work, and when we walk up hills or reach up a lot with our arms, the muscles need more. When we have lung problems, we are breathing in less air than normal people, so less oxygen is going into the blood stream. The oxygen we breathe in goes to the vital organs first (brain, heart, etc) and to other muscles after. So it is normal for a person with lung problems to have muscle fatigue.

If this is a change to the way you normally feel , do discuss it as a new symptom with your GP or consultant. The ALUK helpline is also a useful place to call for support. 0300 222 5800 or WhatsApp [phone]; email [e-mail]

[Cloudancer in reply to Ergendl]

Fabulous reply very informative.Thanks Ergendi

[Tiggertheterrier in reply to Ergendl]

I had a long chat with ALAK helpline nurses and a physio too, just last week. I have mentioned a drop in my average SPO2 levels to the consultant. I reckon it falls even further when I exercise, but would probably need a treadmill test or similar to confirm my suspicions. We know our bodies best, and I can feel the decline quite noticeably. It has taken 18 months to be seen by respiratory consultant so you do worry how much damage had gone on while you wait for ththe experts to see you. My GP surgery haven't got a scooby when it comes to bronchiectasis, you can see the panic in their eyes when you go to see them about it!!!!

[Jack70]

antibiotics and steroids will take a very heavy toll on muscle skeletal and nervous system

[Alberta56]

Just to wish you good luck. I hope the new consultant can give you some answers. My arm muscles are pretty feeble, but I always thought that was just me.

[Tiggertheterrier in reply to Alberta56]

thanks Alberta56. Enjoying a bit of sunshine here this afternoon, lovely to have some warmth!

[Mooka]

Steroids will mask some of the pain. I’ve also been told they could be the cause of the weakness in my legs. I’ve had back problems and that was also the cause of some of the pain/weakness. It’s a guessing game. Good luck with your scan.

[Tiggertheterrier in reply to Mooka]

thank you. Previous history of fibromyalgia doesn't help as they put everything down to that, when I can tell it's a different type of pain. Trying to stay positive!

[Izb1]

I too have asthma, bronchiectasis along with rhuematoid arthritis and other problems . I have only just recently been diagnosed with asthma and have been suffering with muscle weakness, fatigue, most of which I am sure is due to inflammation from my rheumatoid. Prednisolone really help with this but as we know it gives you osteo arthritis so I try to keep off them . I had a hip replacement in September but still suffer pains in my hips but think its still early days from that. I am under Wythenshawe hospital now and they have been wonderful so am hoping things will settle now I am on the correct inhaler. I joined Mymft and view the letters now so if my gp doesn't issue things I can chase it up with them. Do you take calcium d3 for your osteo. I do hope your doctor gets to the bottom of things for you, its no fun dealing with fatigue and feeling poorly x

[Tiggertheterrier in reply to Izb1]

there was some talk, 2 years ago, of referring me to Wythenshawe, but it never happened and I wasn't told why they changed their minds. If my planned move to Northumberland comes to pass in autumn, I believe there's a similar specialist centre at the RVI in Newcastle upon Tyne. I will push for my care to be transferred to them.

[Izb1 in reply to Tiggertheterrier]

That sounds good hope it goes ahead for you x

[Tiggertheterrier in reply to Izb1]

yes, I tatake Tons of various supplements!

[Rattle]

I have got asthma and bronchiectasis but don’t have those problems with muscle pain that you describe but it does sound very much like something my dad got some years ago, called polymyalgic rheumatism.

It commonly affects shoulders, upper arms and/or thighs on both sides of the body. The treatment he had was a continuous very low dose of prednisone. He took it for several years, all the time monitored to make sure the dose was as low as possible.

I know of several other friends and relatives who have had this too, all same symptoms and same treatment. As far as I know they all got well from it after a couple of years.

en.m.wikipedia.org/wiki/Pol...

[Tiggertheterrier in reply to Rattle]

thanks Rattle, I'll keep mentioning it to them, otherwise it will get swept under the carpet!

[Rattle in reply to Tiggertheterrier]

Yes good luck! Hope you get some help with it.

[SuziElley]

I find this interesting. I have the same with thighs and arms but have been putting it down to long Covid……also the fatigue. My asthma hasn’t been controlled properly since I had Covid last June. I was rushed into hospital with Covid, pneumonia and an unidentifiable super bacterial infection. Now you’ve got me thinking…… My oxygen levels are alright if not brilliant. I haven’t had steroids for a while although the last time the asthma was really out of control I had three consecutive courses.

[Tiggertheterrier in reply to SuziElley]

it's all one giant jigsaw puzzle isn't it!! I feel sorry for my new consultant as my medical history is so very complicated and they have only a few minutes to try to follow it ona first consultation. Good luck getting your asthma sorted!

[SuziElley in reply to Tiggertheterrier]

You too, although I am at present waiting to be seen in the long Covid clinic, eleven months since having Covid!

[Tiggertheterrier in reply to SuziElley]

they should rename it 'the Very Long Covid Clinic'🙄😬

[Anne1948]

Hi Tigger, this sounds like is what I was diagnosed with in May 2020 - Polymyalgia Rheumatica (PMR). The problem is usually aching thighs and upper arms, but can extend to hips, shoulders, neck, knees, etc, almost always bilateral. It's an auto immune thingy caused by inflammation. A blood test for inflammation markers (ESR and CRP) should show if that's what it is. To get rid of it you need to take Prednisolone, initially 15 or 20mg per day for 3 or 4 weeks, then reduce slowly, usually over a minimum of two years. I think you should have a look at the HealthUnlocked forum for PMR, healthunlocked.com/pmrgcauk. There are some very helpful and knowledgeable people on there! Good luck.