Joint pain and car journeys, and questions about breathlessness, and medication sensitivity

[Melwise]

Hi, im new here. Ive had a horriffic three months where my health declined rapidly, two hospital stays, many horrid doctors, and finally fibromyalgia has been mentioned a few times. It makes sense on so many levels but I am somedays just not coping, and even though my gp has finally gone oh yes it could be, he still wont do rheumatology referral until neuro write back to say this.

I dont know hoe to cope some days, and some days im not certain they are right on the fibro suggestion.

Some of my weirdest symptoms have been weird sensations in my neck - like cold water running doen it, numbness and pins and needles, which can go right over my head and down my arms. Insomnia that is like someone had injected me with some stimulant, and I also get extremely breathless at this point. Is that really a fibro thing?

After this bad night last night I did get a few hours but when I woke up I still had breathlessness but had chest pain too. I was really worried, but tried heat and it seemed to improve over day and I noticed that it is actually in back too at same point so think it could have been a reflux issue - something ive not had for years but is seemingly back on random days.

Is getting thrush a common thing too? 😢

I feel miserable, when I came out of hospital a few weeks ago I couldnt do anything and my iron was very low. Now I have that sorted but I can just see now whats left and clearly something else.

Thing is I also have thyroid issues and nobody is listening about getting a referral for that incase the meds are wrong and making me sick.

Anyway, does anyone have suggestions fot coping with breathlessness or relieving chest pain, which I think must just be another muscular type of pain? What natural ways do you use for relieving pain? I am actually hypersensitive to medication, docs have finally listened after months of giving me stuff which has caused endless problems, but I now cant even tolerate a paracetamol.

Next week we are going on a long car journey. Im determined to go because its to see my parents and my daughter has been through a lot watching my health suddenly go from out all the time to sometimes being unable to even colour in. But how am I going to cope. At the moment my main source of relief for joints/muscles is heat from a microwaveable heat pad - obviously no good in the car.

What other natural sources of relief are there?

[spider555]

I don't know but I think our immune system is always in overdrive. Even though we feel so tired and fatigued.

Some people say they have adrenal burn outs. I haven't had any tests for that though.

[skit in reply to spider555]

Car journeys need a bit of extra planning I think. First are there enough cushions? Is there a way of doing journey in hops with longish rest breaks?

No one want to be unwell and limit the quality of lifestyle. We learn strategies for dealing with pain, lack of sleep and people not understanding our condition etc. You are the best expert on you.

If you want to find out what is happening ring the consultants secretary at the hospital. Simply ask if a letter is being sent to your GP. I am sure some symptoms of Fibro are what you described others I have not come across. I go to a support group meeting as often as possible and am still learning about issues/Fibro years after my diagnosis.

[spider555 in reply to skit]

At the moment, the med is helping me for sleep.

I think the adrenal stuff is for a naturopath.

[notmebutme]

Like you I don't do well with painkillers - either they don't work for me and/or I get an allergic reaction. I manage some of my pain with a hot water bottle but for when I'm out and about I use a heat patch - if you look up "heat patches" or "curaheat" you should be able to find what I'm talking about. There are different sizes and shapes to fit different areas and is probably your best bet for the car journey. They last quite a few hours and get very warm.

I also use compression gloves, compression sleeves for feet, a knee support and an elbow support. I find compression works very well for me.

Hope that helps.

[Melwise]

Thanks all, ah yes, id forgotten about heat patches I will get some of them. Id been looking for a heat pad that plugged in to charger port but doesnt seem to exist.

Ive not tried compression, but me immediate thought when you said compression gloves is that sounds good, as my natural reaction to hand pain is to squeeze them - but probably not the best way!