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08/07/2009 10:05 AM

Can Raynaud's affect your whole body?

jnsuss
jnsuss  
Posts: 100
Member

I have lyme disease and lyme coinfections, and since getting them, I've acquired weird symptoms that my doctors all seem to want to classify as Raynaud's. I have the typical toes turning purple and getting cold, as well as a single fingertip that has swelled, throbs, and turns cold and white.

However, I'm also having trouble with my right leg: I've been getting bad cramps from the knee down, and the leg will sometimes get white spots, or even lumps or swelling, and cold/hot spots. I also get various burning sensations on other parts of my body and red spots come out that I think are blood vessels? They go away within minutes.

I'm concerned that it's a vascular issue, but my primary care doctor won't refer me for any tests. I'm now going to try to get my cardiologist to refer me, and I'm also supposed to see a rheumatologist. However, my understanding of Raynaud's, which is perhaps incorrect, is that it does not affect the whole body. What do you think?

Jamie

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08/07/2009 06:50 PM
DaisyDo
 
Posts: 417
Member

Raynauds can be caused by a bunch of different autoimmune problems, which DO affect circulation in the entire body. I'm thinking particularly of CREST scleroderma, which I have. All I can say is, FIRE that primary care doctor and get someone else who is aware of this issue. I am speaking from the point of view of a patient whose primary care "gatekeepers" kept me from getting diagnosed for 24 long years. It was only when I changed insurances so that I no longer had a "gatekeeper" that I finally got the testing I needed to be diagnosed.

08/08/2009 05:49 AM
gettingoldsucks
gettingoldsucks  
Posts: 3430
Senior Member

I believe if the Raynauds is bad and triggering alot, and so do my docs, that it can make you ache all over. It is a vascular problem in itself. I go numb randomly all over and also get the hotspots. This past week it is just one toe on each foot that goes completely numb and stays numb for hours. Don't know if it's the Raynauds or one of my other issues causing it but I do know Raynauds is not fun and the docs downplay it.

08/08/2009 06:39 AM
jnsuss
jnsuss  
Posts: 100
Member

gettingoldsucks, did you have any tests to rule out anything else before your doctors determined it was the raynaud's causing you the pains? I just wanted to know what I need to ask for.

08/08/2009 06:59 AM
gettingoldsucks
gettingoldsucks  
Posts: 3430
Senior Member

Pretty much all AI diseases. Brain MRI's, tons of ongoing bloodwork, EMG's, liver biopsy, full MS testing. My Dx's are RA, MCTD, Raynauds, brain lesions, migraines, a BC disorder, neuropathy. I have a hard time telling what is causing what so I just go thru life feeling sorta crazy. I'm assuming since you have a Lyme DX you have been checked for everything else. I do think the docs just grab one of your DX's and say "oh, that is from that" cuz they don't relly know either and don't care if they deem it a minor sympton.

I believe Raynauds is quite distinguishable just from the color changes and pain. Nothing else makes you turn 3 colors in 45 minutes, then goes away only to keep happening. Mine was Dx'd just on site of it triggering in the doc's office. I do know my widespread body pain and aches and raynauds is much worse in winter months to the point I can't walk for months. Blood tests for it are ANA and RNP.


08/08/2009 07:33 AM
DaisyDo
 
Posts: 417
Member

What is BC disorder?

I think anyone with Raynauds needs to have a thorough autoimmune workup, including SCL-70 and anticentromere antibodies. Unfortunately the latter are not in the usual ENA panel of tests and have to be ordered separately. I finally had to specifically ask for it to be done, and if I hadn't, I'd still be undiagnosed.


08/08/2009 08:25 AM
gettingoldsucks
gettingoldsucks  
Posts: 3430
Senior Member

BC - bloodclotting. The name is really long. I get leg Dopplers on tuesday to check for more clots and deep vein Thrombosis then getting both legs fixed this time. Surgery, then laser ablation, then sclerotherpy shots to finish it off. Not looking forward to it. will take aroung 4 months.

I was neg for anticentromere antibodies. He did test it. Not unusal for MCTD and pos RNP though.

Daisy, that's really sad that you know more then docs and have to tell them how to do their jobs and what to look for. all part of being proactive in our own care, which is a must.


08/08/2009 12:34 PM
DaisyDo
 
Posts: 417
Member

Well, I AM a doc. Retired. After 24 years of worsening autoimmune symptoms and vague diagnoses, I just had to research the likely possibilities and start being a little pushy.

Now that they know what's going on, they can take action where needed to slow down the various damages of CREST wherever possible.

Be aware, too that there is anticentromere-negative CREST as well as anticentromere-positive CREST. Apparently there are two very similar varieties of it.


12/15/2009 08:56 AM
DaisyDo
 
Posts: 417
Member

sntsven, your posting reminds me of a quote attributed to P. T. Barnum: "There's a sucker born every minute."

And incidentally, aren't there some rules on this site about advertising?

And no, I think that in Raynaud's the possibility of CREST syndrome is much more likely than Lyme disease. In the study at http://www.sciencedirect.com/science?_ob=ArticleURL& _udi=B6TDC-4CMYV65-9D&_user=10&_rdoc=1&_fmt=&_orig=search& _sort=d&_docanchor=&view=c&_searchStrId=1136902971& _rerunOrigin=google&_acct=C000050221&_version=1& _urlVersion=0&_userid=10& md5=fbd08ce5306c0a96e4b27884a461f037 they found that 31 percent of Raynaud's patients had the anticentromere antibodies and other signs usually associated with CREST syndrome.


12/16/2009 09:50 PM
DaisyDo
 
Posts: 417
Member

Now, I'm going to trust there will be no more advertising by people with a financial interest in their own products, and move back to the original discussion of whether Raynaud's can affect the whole body.

I said yes, before, but did not back up my assertion with studies. But lately I've been reading more articles that say it is indeed the case. Doctors already know from direct observation that Raynaud's can affect not just the fingers and toes, but also the nose, ears, and tongue. But here are some studies expanding this range:

It can affect the nipples: http://www.ncbi.nlm.nih.gov/pubmed/15060268

Here's another article indicating Raynaud's can affect visceral organs like the heart, oesophagus or lung and cerebral circulation: http://www.ncbi.nlm.nih.gov/pubmed/9118818? itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubme d_RVDocSum&ordinalpos=2

In scleroderma, "The tendency to abnormal diastolic function of the left ventricle correlated with the duration of Raynaud's phenomenon: http://www.ncbi.nlm.nih.gov/pubmed/8883437? itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubme d_RVDocSum&ordinalpos=3 I found is last one to be particularly interesting because I have both Raynaud's and the anticentromere antibodies associated with both scleroderma and Raynaud's AND have recently been found to have precisely this type of heart dysfunction.

In this article it says "Severe Raynaud phenomenon is an indicator of a serious and potentially fatal underlying disease. In adult patients with mixed connective tissue disease, severe Raynaud phenomenon is associated with a higher mortality rate,32 whereas late onset of Raynaud phenomenon in adult patients with scleroderma is associated with an increased prevalence of renal and lung disease.33 Cold-induced vasospasm of blood vessels in other organs, including the lungs, heart, GI tract, cerebral vascular system, and kidneys, has also been reported in adults.34,35,16 One adult patient had severe dyspnea <difficulty breathing> related to a coronary artery vasospasm that caused left ventricular heart dysfunction; his symptoms resolved with treatment using a prostacyclin analogue (iloprost)<a vasodilator>.36 Another patient had improvement in his left ventricular dyskinesia with nifedipine treatment <another vasodilator in the calcium channel blocker category>.34 " Text in <> are my additions.

The cited references are as follows:

16. Turton EP, Kent PJ, Kester RC. The aetiology of Raynaud's phenomenon. Cardiovasc Surg. Oct 1998;6(5):431-40. [Medline].

32. Gendi NS, Welsh KI, Van Venrooij WJ, Vancheeswaran R, Gilroy J, Black CM. HLA type as a predictor of mixed connective tissue disease differentiation. Ten-year clinical and immunogenetic followup of 46 patients. Arthritis Rheum. Feb 1995;38(2):259-66. [Medline].

33. Walker UA, Tyndall A, Czirjak L, et al. Clinical risk assessment of organ manifestations in systemic sclerosis: a report from the EULAR Scleroderma Trials And Research group database. Ann Rheum Dis. Jun 2007;66(6):754-63. [Medline].

34. Ellis WW, Baer AN, Robertson RM, Pincus T, Kronenberg MW. Left ventricular dysfunction induced by cold exposure in patients with systemic sclerosis. Am J Med. Mar 1986;80(3):385-92. [Medline].

35. Vergnon JM, Barthelemy JC, Riffat J, Boissier C, Claudy A, Emonot A. Raynaud's phenomenon of the lung. A reality both in primary and secondary Raynaud syndrome. Chest. May 1992;101(5):1312-7. [Medline].

36. Tschope C, Westermann D, Steendijk P, et al. Coronary vasospasm-induced acute diastolic dysfunction in a patient with Raynaud's phenomenon. Clin Res Cardiol. Jun 2006;95(6):344-8. [Medline].

You can find at least some of these articles online if you Google the authors and titles of the articles.

I found these articles interesting, and I hope you will, too. Everyone bundle up and keep warm!

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