skin

[anbuma]

does anyone with fibro have bright red skin?on and off throughout the day my skin turns bright red sometimes like a rash and then patches and its all over

[Walnutwhip2]

Have you had blood tests for Lupus?

[anbuma in reply to Walnutwhip2]

no not that I specifically know of. mind you my DR has done tests in the past and not explaining what they were all for.i am not due to see him again in the near future unless something else comes up but I am sure I have mentioned it a long time ago but then the rashes are only recent.will ask next time I go.

[tulips123]

Yes have had this problem since childhood, have discovered recently (cant remember where from) thermal fluctuations can be another symptom.

[anbuma in reply to tulips123]

did your gp tell you what it is?i am often feeling hot one minute then ice cold the next

but haven't said this to my DR

[tulips123]

I've remembered where I got it from - this site (cant remember who). She said her information came from a book "The Fibro Myalgia Advocate" I had heard about this book before but price £42 put me off. She said try Amazon, which I have done price £3.13 + £2.85 postage & packing for 2nd hand in good condition, coming from USA. This condition causes so many symptoms. There is a problem with brain hormones, which means it is neurological which makes sense of so many different symptoms that we have in common.

If you go onto the Amazon website, you can read samples from the book, which will explain things a lot better than I can, in a fog today. I've been looking for answers for many years. Best of luck.

[anbuma in reply to tulips123]

I looked on amazon and cheapest I could find totalled seventeen pounds+

did you buy yours recently?

[tulips123 in reply to anbuma]

Ordered on 6th March, expecting delivery by 6th April.. Did you look for 2nd hand books, because 3 days ago there were a variety of sellers (all in the USA) selling used books for a few £s, p&p all £2.85, and listed as good or acceptable condition. Try again. Actually, I'll go check on the author, in the meantime fingers x!

[tulips123 in reply to anbuma]

Yes, author Devin J.Starlanyl, go onto Amazon, search for Fibro Myalgia Advocate, just under 1st entry you should see more options:- used from £3.00. 1 click will give you a long list. All the best!

[anbuma in reply to tulips123]

hello tulips123

I found it on amazon the second time I searched and ordered it today.maybe I should send one to my family so they realize what fibro is and how it affects people

[tulips123 in reply to anbuma]

I think many people have no idea just what this condition can do to you. Even some medics don't seem to know much, even when sympathetic towards patients. There does seem to be more information coming from USA recently, so perhaps there is light @ the end of the (very long) tunnel! Best wishes anbuma. Happy reading. X G'night, sweet dreams.

[anbuma in reply to tulips123]

so true.no one has given me any answers to symptoms over the last 18 months.my family definitely don't understand and have had argumnets.

thank you for your wishes.i couldn't get to sleep last night fro coughing(something else my DR kind of dismissed)and ended up sleeping on 4 pillows.

[tulips123 in reply to anbuma]

Sounds like you're having a tough time. Firstly, don't like your doctor, the right doctor can make a lot of difference. This website has directory of members' recommended gps and consultants, could be worth seeing if there are any in your area. I'm sure if you message admin. They will help to access the list. If no jjoy there, would suggest enquire locally friends and neighbours, find another surgery.

Unfortunately, we can't do that with family , but I do think you are on the right track with trying to explain to them what is going on, what this condition is doing to you. They probably think you're just having a moan! This is a neurological condition,serious impact on you. I think you will need patience and tolerance, not easy when you're already feeling rough, but hopefully could pay dividends. Perhaps worth waiting until that book arrives.

Really important to get good nights sleep. If yours is disturbed that much by coughing I think it's very important to find a more sympathetic dr asap.

I do feel for you, and hope you start to feel better soon. Take care. X

[anbuma in reply to tulips123]

there are 2 practices where I live and I have already switched from one to the other so changing is not an option.i have the best dr out of both practices even if the last few months have been a bit rocky .some days I feel good knowing there are people here knowing what we all go thru.tehn some days I feel I know there is something seriously wrong

[tulips123 in reply to anbuma]

I know what you mean. There is always someone here when you need support or advice, and you can tell when people understand what you're going through. Perhaps your doctor just does not know how to help you. No 2 days are the same, and I think it's quite scary getting different symptoms from time to time. I often go to bed wondering what sort of night is coming and the same thought for tomorrow.

Keep in touch. Hopefully when the book arrives it will help to have things explained a bit more. Won't take away pain, but less scary. x

[anbuma in reply to tulips123]

maybe I should pass it around family members then they will understand

[tulips123 in reply to anbuma]

Might be a good idea. Although would suggest you read it 1st!

[anbuma in reply to tulips123]

it is only the last 18 months things have worsened for me.they may all be fibromyalgia but I am still somewhat concerned that my huge stomach is something more serious-because of the symptoms I have and the way my dogs are -I don't see how it can be muscular as my dr said..i am due my surgery for gallbladder removal in May sometime. I just feel if dr's had picked up on symptoms gallstones would have been detected a lot earlier.

hopefully our DR's will one day follow usa and recognize fibro for what it is.

[tulips123 in reply to anbuma]

As I understand it, extreme muscular pain and fatigue are just 2 of the main symptoms people tend to be aware of. There an awful lot more that we tend to have in common. I have gallstones/inflamed gallbladder. I also have those muscles you're talking about that can go into spasm and cause the most horrendous pain. Gall bladder problems can cause bloating, make things even harder to cope with. It's quite a long list, no wonder we often feel so rotten. I wouldn't like to live with me!! hopefully I'm off to land of nod zzzz g'night sweet dreams. Xx

[anbuma in reply to tulips123]

hi

have you been advised/or are you having gallstones removed

[tulips123 in reply to anbuma]

Too dangerous. I have 2 large stones, keyhole surgery not suitable in case piece breaks away and blocks a duct, general anaesthetic def. not an option 'cause my lungs are scarred following serious double pneumonia in 2008 I now have to use oxygen 24/7. Ideally need to take out the gall bladder, but they can't. My stomack problems are better now, I've cut out dairy & bread. I think this is what is known as toss a coin heads you loose tails you loose as well! I am lucky in that I have best gp ever, and family and friends are amazingly tolerant and supportive. I hope that the F.M. Advocate, when it arrives will help your family to understand bit more. It took a while, but it has made a big difference now that my lot have more understanding.

Keep fighting, I know hard it is when you have no energy. I do believe medics in usa are starting to really get a handle on this horrible illness. There is hope for more effective treatment in time.

Take care. X

[trae]

Yes I get this anlk the time. I dont kniw what causes it. If gyoy find out please let me know xx

[LindseyMid]

Do make sure you bring this up with the doctor. Photosensitivity (allergy to the sunlight - not the same as being sensitive to bright lights) can be a symptom of Lupus or a side effect of various medications and shouldn't be dismissed without thorough testing and checking.

[Lotus954]

When I first got that, they told me it was Redman's Disease and it was from an allergic reaction. After that, my skin peeled about 4 times before the attack was over and I was left with hyper-sensitive skin..so sensitive that I couldn't wear clothing with labels and on certain days, I had to wear my clothing inside out because seams hurt. To this day, 90% of my wardrobe is velour. I was going to ask if anyone is having this really sensitive skin thing. Yesterday, my skin hurt so bad that I had to take a pain killer to escape it.