I seem to be writing on here a lot lately but so worried about my Mum who's blood platelets are high, who keeps getting breathless (not sure if this is anxiety or not) and who is suffering with aches all around her waist and back, just under her ribs. She is waitibg for a scan but we all know that its the waiting that we all worry about.
The doctor said her aches were due to her coughing lots through her infection but she hasnt done alot of coughing. She says she just doesnt feel right and is concerned as she has no appointment to see someone for another 6 weeks!
I told her to get a second opinion from another dr but she says she has lost all confidence.
I try to give advice, reassure and listen byt it just doesnt help😢
I was texting her tonight and she said "I am feeling uptight so will go now"
Has anyone else experienced breathlessness with aches all around their middle at all?
I just don't know what to do for the best and worry that her worrying will just make her worse.
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Kim8060
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I've had sore ribs for several years (low down and to the sides mainly), which have improved with using my reliever inhaler. The soreness is caused by my diaphragm pulling against the rigid muscles to get my lungs moving. I also visited an osteopath during a flare up before Christmas - he showed me how to stop my diaphragm going into spasm and he massaged the sorest intercostal muscles around the spare ribs to ease the soreness.
Her platelets are high? Her GP is very slack! -get a referral to a haematologist,! I had high platelet (700,000) count and slowly increasing ,high red blood cell count, (and white ones. ) diagnosed with Polycythaemia rubra vera- a slowly progressing blood cancer -symptoms were similar-tight around the diaphragm under the ribs and breathing disturbed- confused it with my asthma.
ET has high platelets mainly.
PV has high red blood cell volume mainly
CML is also a blood Cancer.
These 3are called MPN's or Myeloproliferative neoplasms -
If diagnosed and treated you should have a near normal life span .
It's not like an acute leukemia-MPN's are chronic slowly progressive blood cancers.
Firstly the GP should test you for "temporary or secondary polycythaemia ( without the words Rubra vera)"-mine did -actually my GP was away and four different doctors who happened to be on duty in the clinic were excellent in following it up.
They check for-
Other cancers and a few other things-blood tests to see if the platelets are increasing -an undiagnised infection and tell you to immediately stop smoking .
A lot of smokers get the secondary form of polycythaemia.
When this has all been done they send you to the haemo who will probably advise a Bone Marrow Biopsy ( not a transplant ha ha ) . This doesn't hurt in Australia , well I didn't feel a thing-they give you a twighlight sedation.
When they get this result there are often some grey areas between diagnosing it as ET or PV. It doesn't matter as The treatment is the same . I take 9 Hydrea tablets per week and within 3 weeks all my counts were back to normal .ive been lucky -PV can cause blood clots and as a result strokes and heart attacks. I've prevented yeses by being dx. I have no side effects from the illness or tge Hydrea.
Some people get dx after a stroke or blood clot in their leg or whatever.
MPN's are rare but not classified as " extremely rare " about 2or3in 100,00.
A lot of research is being done now .
Here is my email address in case you want to let me know how you go
todds.marion.shaw@gmail.com
If she is a smoker it could be as simple as not smoking and not an MPN.
Hi Mardi, thank you for your reply (a little scary)
She has seen a haemotologist, saw her in November and did 10 blood tests which all came back normal. She said the platelets were slightly raised but wasnt concerned and she will keep an eye on them, if they go up she would take it from there.
It was only when she went back last week that she had found that they had gone up but this was after she had had an infection.
The consultant has now sent her for a scan and requested 3 more blood tests. She suffers with COPD, had TB 4 years ago and the problems started from that.
Will keep you updated and thank you for your help.
Thanks -I had pneumonia four years before my dx.not that that has to be relevant but I think it was relevant to me developing mild bronchiectas the same time as my PV dx. TB is different however.
Hi Kim8060, I often get low level pain around the middle waist area after exertion it subsides after rest it seems to be caused by the breathing. Sometimes when you have an infection aching in the lungs and muscles seems to be common even with no cough like your mum. In fact it is often better if you are coughing as it clears the infection out so to speak. Glad you chose us to confide in and chat to come and talk any time it helps. Sounds like your mum could do with someone to talk too also best wishes.
Thank you for your reply. It does seem she only gets it in and off and they are more aches than pains, she says she feels better when she holds a hot water bottle against it. Sometimes when she is sitting its like she is looking for symptoms that might not necessarily be anything just a sign of infection which is what her consultant thinks she has somewhere in her body. It just seems never ending and there is nothing I can do to reassure her 😢 I did suggest she see someone about her anxiety but she hasn't as yet.
Hi again Kim, your mum is right warmth does help. The wheat bags that you warm up can be used too, I have a heat pad in my chair. Cold makes all the aches and pains worse. A suggestion only, do you have a breatheasy group near you?, sometimes speaking to others in the same boat helps. Self help groups are often better for anxiety, but not everyone likes to admit they have an anxiety problem as they may be labelled as drama queens in modern language. When you are older like myself too, some of the problem is due to age , have to get used to determining which is the problem, many adults wont listen to their families advice but might to an outsider. You can also go and see your doctor for advice if you are concerned about your mum, take care must go now jobs to do x
Funny you should mention the breath easy group because we were chatting about it the other day, there is one right near me, so about 10mins from my mum. She wanted to wait until her infection had cleared but was asking where abouts it was so hopefully she wil go to the next one. I hope you got your jobs done 😉😊
Kim, antidepressants can help with pain apparently and at the same time relieve anxiety-I have been on antidepressant for over 40 years --they work really well for me-the latest one my doctor changed me too has more of a treatment in it for anxiety than the depressive side. I was able to go in an airplane in long haul flights after starting these! marion -
That is good to know. She was put on anti depressants when diagnosed with COPD but only took them for a while as she didnt want to rely on them plus she has to take sleeping pills every night. Like I said she isnt actually in pain just aches which is relieved by a hot water bottle. She has just been over to look after my little boy who is 2 and seemed well. She told me her peak flow has gone up from 300 to 350 today.
They should give anti depressants another name-some people think they are sedatives I think- I cope really well on them -without them I don't cope with stuff well- simple-as that -I hope she's feeling better-can she exercise? -Marion
She doesnt excercise as such although have told her to start. She is happy to walk around the shops but does get breathless lately so this puts her off, the weather here at the moment doesnt help.
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COPD update and next steps.
!!! SUZY 6 HAS RUN OFF WITH A RICH ARAB !!! 
specialist not listening again
Advise /any help greatly appreciated 
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